View allAll Photos Tagged ileostomy
An image taken on a mid September high tide in Clevedon.
I had surgery in August to reverse (close) an ileostomy which brings to an end 18 months of pain, misery and a lot of stress. It remains to be seen whether or not my condition raises its ugly head but there is a fair chance that I will be asymptomatic hereon in.
I still need to recover fully and then the challenge of finding my next career move and transport.
I sincerely cannot thank Daniel Andres enough for being one of the kind photographers who has offered to take me out so that I can continue my love of being with a camera. It has been very difficult but I have my fingers crossed.
The Silchester village tractor run is a charming event that captures the spirit of community and charity in the north of Hampshire. This festive gathering, typically held in December, sees a convoy of brightly decorated tractors parade through the local villages, bringing joy and Christmas cheer to residents. The event not only serves as a delightful spectacle but also raises funds for important causes, such as the Ileostomy & Internal Pouch Association and Simon Says Child Bereavement, supporting those living with an ileostomy (an operation to bring the end of the small bowel through an opening in the abdomen to form a stoma) and young people experiencing bereavement, respectively. It's a heart-warming example of how local traditions can bring people together for a good cause, ending with a gathering at Silchester Farm where the community can enjoy food, drink, and the company of neighbours while supporting charitable efforts.
Gary and Vicki Crockford had taken over the Silchester village tractor run for the first time in 2023, preparing a fleet of tractors ready to light up the streets and bring some Christmas cheer to all. The tractor run saw several decorated tractors take to the streets, passing through Sherfield, Bramley, Pamber Heath, Tadley and Pamber Green, before ending at Silchester Farm, the event's main sponsor.
www.basingstokegazette.co.uk/news/23989733.farmers-hold-t...
Ankara University Faculty of Medicine, Ibn-i Sina Hospital Emergency Surgery Service
Ankara Üniversitesi Tıp Fakültesi, İbn-i Sina Hastanesi Cerrahi Acil Servis
Would you please pray for my mother? Just pray.
Thank you.
Annemi özlemek istemiyorum...
Struggle With Pancreatic Cancer Continues
Everything is for my mother.
January 17, 2012 "Hopeful Expectations"
Ankara University Faculty of Medicine, Ibn-i Sina Hospital Emergency Service <---- My blog. Do you want to see?
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I have been quiet this year. I had two attacks of acute diverticulitis, one in 2013 and one in 2014, the latter being more serious. I was treated both times with IV antibiotics but decided that two hospital admissions was enough. Not knowing when the next attack was going to be was an awful feeling.
So I decided there and then to have elective surgery to remove my sigmoid section of colon once I had recovered from the diverticulitis and in Jan 2015 I went in for the op. It was keyhole initially to cut and rejoin the colon, woke up from the op, a little sore but no stoma. Then whilst I was still in hospital some 48 hours after the op I deteriorated. The complication was the rejoin had come apart and I was passing waste into my body which gave me faecal peritonitis. The pain was unbeleivable. I had to have emergency surgery after a CT scan confirmed what had happened. It was at this point I had a laparotomy and a colostomy formed (Hartmann's Procedure). I spent then 2 weeks in hospital. That was in January.
Then 3 weeks ago I went in again to get the colostomy reversed (Hartmann's Reversal) which was to rejoin my colon. I was also given an ileostomy to allow the anastomosis (join) to heal. The ileostomy right now isn't easy - even after 7 months training with the colostomy.
In 3 - 5 months time I will get the ileostomy reversed (which I have been told is a simple procedure - maybe 2 days in hospital if no complications) and then I should be able to function normally. Obviously a little unsteady at first. The purpose of the colon is to reabsorb water from waste so less colon less absorbtion. This should settle after several months but I'm sure I will be taking Loperamide tablets for a little bit.
That's my story, I've not aired this to anyone other than friends, family and colleagues before. It is a nightmare but hopefully for me there is light at the end of the tunnel (if nothing else goes wrong) and I appreciate for many people going through serious illness there is no light at the end of the tunnel. Knowing this adds to my emotions, my heart goes out to all tnose suffering, both here and in hospitals nationwide.
The Silchester village tractor run is a charming event that captures the spirit of community and charity in the north of Hampshire. This festive gathering, typically held in December, sees a convoy of brightly decorated tractors parade through the local villages, bringing joy and Christmas cheer to residents. The event not only serves as a delightful spectacle but also raises funds for important causes, such as the Ileostomy & Internal Pouch Association and Simon Says Child Bereavement, supporting those living with an ileostomy (an operation to bring the end of the small bowel through an opening in the abdomen to form a stoma) and young people experiencing bereavement, respectively. It's a heart-warming example of how local traditions can bring people together for a good cause, ending with a gathering at Silchester Farm where the community can enjoy food, drink, and the company of neighbours while supporting charitable efforts.
Gary and Vicki Crockford had taken over the Silchester village tractor run for the first time in 2023, preparing a fleet of tractors ready to light up the streets and bring some Christmas cheer to all. The tractor run saw several decorated tractors take to the streets, passing through Sherfield, Bramley, Pamber Heath, Tadley and Pamber Green, before ending at Silchester Farm, the event's main sponsor.
www.basingstokegazette.co.uk/news/23989733.farmers-hold-t...
29/52
This is my dog Skylar. She is fun, loyal and smart.
growing up, I wasn't a pet person at all, in fact I was petrified of dogs.
I had life changing surgery that would take me almost a year to fully recover from. I had a ileostomy (a bag) because my Crohns disease had gotten out of control. One of the nurses that was assigned to take care of me after the surgery suggested to get a pet, something that could show me love and affection and help steer me away from depression while I recovered and so I found Skylar. almost 3 years later and she still brings happiness into mine and my families life. She is a blessing.
Mum kept nagging me for a picture of Skylar for mothers day and I really wanted to take a photo that just stands out, something that shows how important she is to my family.
Strobe info:
Shot with a Godox v860ii through a Newer octabox (camera right) @1/64 power
And those who were seen dancing were thought to be insane by those who could not hear the music. - Nietzsche
I hadn’t been sleeping well. Back on the cycle of waiting for the exhaustion to take over allowing me to sleep soundly for a few hours before the alarm went off so I could check the stoma bag. Downside of having Elvis is that you will never have a full nights sleep. Well you could but you would either have to starve yourself to do so or wake up covered in shit. A small price to pay to still be alive when you should be dead if it wasn’t for the surgeons and hospital staff saving my life.
The snow was coming down in huge flakes, the wind would carry them to my window where they stuck. Without getting off my bed I knew that down on the black asphalt of the road below, the flakes were forming a soft blanket. It’s April tomorrow so in theory, all this wintery weather should have been and gone leaving spring to enter stage left and kick winter snow stoutly to the end of the year. However in the UK, seasonal weather was always a surprise and this year, it appears was no exception.
I had managed to dress myself and brush what little hair I had left. They had offered to shave my head like most of the long term patients but I had declined. My hair and I had a longstanding arrangement for as long as I could remember; it can do what it wants as long as it never falls out. I had thick hair, a gift from my mother especially and father. I never had to worry about male pattern baldness which I’m sure had it happened during my early twenties as it did with some of my friends, I would have been as devastated as they were. With the chemotherapy, it was a lot thinner yet it still survived the fortnightly bombardment from the chemo and I wasn’t going to shave it off because for me, it was another open defiance to the cancer. Given half the chance I would dye it bright green.
Black Sabbath ‘Paranoid’ played on in the background. It’s one of the rock songs that you can’t help but nod your head to. I laced up my shoes and tentatively made my way to the door. Pulling it aside slowly I peered around the doorframe and checked the corridor. It was quiet, no Trevor stampeding up and down, no nurses with carts. I made my way down the corridor towards the nurse station. My room door quietly closed behind me as I ventured into a realm I had not set a foot in for over forty years.
The walk down to the ground floor was punishing. I had to sit several times and gather myself. A year ago I could have done this walk in minutes, these days I moved much slower and it would take me around ten minutes. Not including the sit down breaks. It was a desperate situation but I knew, with commitment, my stamina would improve greatly. I refused to take the lift which probably wasn’t wise but I was determined to walk the journey. There and back. No lifts, no help, no wheelchairs.
Pushing the door open I immediately took in the vast size of the room, there were wooden benches on either side of me. The right hand-side of the room had floor to ceiling windows which bathed the entire area in a natural light. The dour colours of the wall and the carpet didn’t make it inviting to the eye. There was a pleasant aroma, burning candles on a table by the door were likely aromatherapy oil based wax. It was so subtle that it was hard to identify the aroma, lavender maybe. It was soothing, I breathed deeply and closed my eyes not wanting the moment to be wasted.
I slowly made my way down the benches either side of me to the front of the room. I knew it was the front, that’s where the alter was.
The alter was a plain affair in comparison to others I had seen in my life. A simple wooden crucifix at its centre with a vase of blooming daffodils either side. Off to the side was a reading pedestal facing towards the wooden benches with a book open on the sloped surface. I walked over to the pedestal intrigued at what page it had been left open. Gospel of Luke, Lazarus parable. Seemed to me to be strange for a hospital chapel of bereavement and spiritual guidance.
The Bible was King James, both old and new testament. It was ornate, likely many years old and no doubt from the vicars personal library. Normally I would expect a Gideon’s abridged version in such places. Having the Old Testament to hand was also gaining great interest from me. There were thin leather bookmarks inserted into Genesis, Psalms (of course) and Proverbs. One of the bookmarks did seem out of place to me, more so than having any pages marked in the Old Testament, one was placed within Deuteronomy. It was heavy reading, lessons and consequences. If you think of a TV evangelist, the ones that shout and scream in a sweat drenched sequin cat suit, all that shouting and screaming is normally from the Old Testament. And normally with some (greatly embellished) poetic licence.
“Can I help you” he said. I hadn’t noticed him standing by me as I was studying the passages marked in Psalms. Completely lost in thought and a past that I never thought I would recall with a clarity.
“I do apologise, I was lost in my thoughts” I said. “Ann Hardy suggested I visit the chapel and talk to the vicar” I added to justify interloping into somewhere I felt I didn’t really belong or was entitled to do so.
“Chaplain, not vicar. Please call me Thomas and you are…?” he asked.
“Jack Hargreaves, resident of Summersome and grateful patient of Dr Hardy, she is now my councillor I guess”. I held out my hand towards him. He took it and shook it.
“We shouldn’t really, Covid rules. However I find it hard not to greet people in a traditional way”.
I nodded in agreement. Covid rules still applied in the hospitals, face masks, the two metre rule, applying ant-viral liquids to the hands. I had forgotten. A momentarily lapse. Then I realised I wasn’t wearing a mask.
Thomas was a young man, dressed neatly with kind eyes. His brown hair combed and parted with just a sliver of grey at the sides. He didn’t wear the traditional collar which generally suggests he hadn’t been ordained. Or, like my vicar when I was a child, found it irritating and only wore it when absolutely necessary. He took his faith seriously, that I could conclude immediately. I had met many priests during my studies at school, some fascinating and some not so. He had a lot to give and would do so if he knew he could help. The Trust had chosen well with Thomas.
He walked over to a corner beside the alter where there were two chairs similar in style to the one in my room and a small table. He motioned to the empty chair as he sat down. I slowly followed him over and gently eased myself into the chair. Another vase of daffodils on the small table and some flyers I guessed outlined the chaplain services.
“Tell me about yourself Jack?” he asked.
I had never liked that question. I had been asked it three times in my life and I had never responded well. It was so open ended and so very easy to misapprehend. That was the point of the question I suppose. You decided how much you would reveal as opposed to talking constantly for hours about yourself. I chose to tell Thomas life from July last year when I was carted into the operating theatre. I kept it concise.
Thomas let his head tilt to look at the floor slightly shaking it from side to side as he did so. He was laughing to himself. He clasped his hands together and let them rest upon his thighs.
“I’m guessing I could determine all that information from reading your hospital notes and talking to Ann. Or your doctor. What I am interested in is knowing about you Jack, what brings you to the chapel and I suppose, what drives you to seek spiritual guidance”
It was a good question. What was I doing there? It dawned on me that I had no real answer for him. I didn’t think I needed any spiritual guidance, since last July life for me had become simple. Each day was fighting the cancer and living like it could be my last. Choosing to do things that I felt were fulfilling. I didn’t feel like I needed saving, nor that I had to come to terms with my past. If there was a God then all that would be evident on judgement. However religion had been a significant part of my early life and if I had learned anything over the last eight months, I had learned to listen to all those people willing to share their thoughts and advice with me.
Thomas was looking at me, there was an anticipation in his expression.
“I guess I’m here to check how my credit is with the Big Man” I said.
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I am diagnosed with terminal stage 4 colon cancer that has metastasised to my liver. I now have Type 1 or Type 2 diabetes (still waiting on diagnosis) and as a result of the colon cancer, I have an ileostomy called Elvis.
You probably won't catch Santa peddling fruits and veggies at a farmers' market, but trust me, he's got all the farming chops! In fact, there's some pretty convincing proof that he operates a farm right at the North Pole, right next to his toy factory. What goes on in Santa's world is a bit of a mystery, but here’s some of the best evidence that he’s either a farmer or has some serious farm roots.
Here he is riding a Ferguson TE20 agricultural tractor designed by Harry Ferguson. By far his most successful design, it was manufactured from 1946 until 1956, and was commonly known as the Little Grey Fergie. It marked a major advance in tractor design, distinguished by light weight, small size, manoeuvrability and versatility. The TE20 popularised Harry Ferguson's invention of the hydraulic three-point hitch system around the world, and the system quickly became an international standard for tractors of all makes and sizes that has remained to this day. The tractor played a large part in introducing widespread mechanised agriculture. In many parts of the world the TE20 was the first tractor to be affordable to the average farmer and was small and light enough to replace the draft horse and manual labour. Many TE20s remain in regular use in farming and other work and the model is also a popular collector's item for enthusiasts today.
The Silchester village tractor run is a delightful event that embodies community spirit and charity in northern Hampshire. Typically held in December, this festive occasion features a parade of brightly decorated tractors that spread joy and Christmas cheer among residents. The event not only serves as an enjoyable spectacle but also raises funds for important causes like the Ileostomy & Internal Pouch Association and Simon Says Child Bereavement, aiding those with ileostomies and young people facing loss. It showcases how local traditions unite people for a good cause, culminating in a gathering at Silchester Farm for food, drink, and community bonding while supporting charitable efforts.
In 2023, Gary and Vicki Crockford took charge of the Silchester village tractor run for the first time, preparing a fleet of tractors to illuminate the streets and spread Christmas joy. The run featured several decorated tractors traveling through Sherfield, Bramley, Pamber Heath, Tadley, and Pamber Green, concluding at Silchester Farm, the main sponsor of the event.
www.basingstokegazette.co.uk/news/23989733.farmers-hold-t...
www.nhs.uk/conditions/ileostomy/
Ileostomy hernia and some sort of lump removed . Painful but going well
Lump most likely scar tissue from the three previous surgeries . It's been checked out
Summersome ward. A cancer ward. I had an isolation room. I had been staring out of the window for what seemed like hours. I had been a patient here for so many days now that I had lost count. The rain was falling lightly on the windows, that fluffy rain that anyone with long hair dreads as it turns the hair frizzy. Not heavy enough to really warrant an umbrella, just a misery to endure if caught out in it. In short; a pain in the arse.
There was a quiet knock on my door and it was gently pushed open and in walked one of the ward doctors. I hadn’t spoken to him before but had seen him doing the rounds on the open wards. From what I understood he was the senior doctor. He lifted my notes from the bottom of the bed and read them, turning over each sheet and studying it. Glancing up at me every now and then and smiling before returning to the reading. He was a kind looking man, tall and thin with combed back jet black hair. His medical coat white and crisp, a single pen in the breast pocket.
“Good afternoon Jack, you won’t remember me from seeing you in critical care. I’m Dr Crusic, I’m the senior doctor on these wards. How are you feeling?”
I was always cautious of anyone introducing themselves with ‘you won’t remember me but…’. This was normally my subconscious warning me that the following experience was simply a morphine induced fantasy, an hallucination normally so real you could reach out to touch the people. Of course, you were never given the chance so the illusion remained.
“I’m okay I think. No real pain, still can’t sleep at night but that’s down to missing my duvet and the noises. How are you?” I asked.
He looked up from reading and smiled, replacing the notes on the bar of the bed, he slowly walked over to the chair in my room.
“I am very well thank you for asking, do you mind if I sit down?”
“I don’t mind at all please do” I gestured towards the chair with my open hand.
He sat down, opened his mouth to speak and then paused before leaning towards me, hands clasped in front of him. In my business we call this foreshadowing. Despite his friendly, calm demeanour I was getting an uncomfortable feeling.
“Jack, you have responded really well to the chemotherapy so far. The diabetes issues I am working closely with the hospital team to find the best solution for you. We need to determine whether you are type one or type two. It’s still unclear” he explained.
His head was cocked slightly to the side, a warming smile as he unclasped his fingers and brought them up to his chest as if praying.
I nodded to him that I understood what he was telling me and returning his smile.
“I don’t want to be unkind but I want to inform you so you understand what I am going to tell you based on the tests we have done. Do you understand?” he asked.
I slowly nodded to him. I felt cold again. Scared again.
“The recent scan has shown that the cancer hasn’t spread, or grown bigger. This is good news. However we have been monitoring your heart and we have recorded irregularities. We have grave concerns about this” he said shifting in the seat and leaning forward. Hands now clasped and rested on his knees. “Do you understand me Jack?” he added.
I nodded. “From what I can determine, and reading between the lines, my cancer will eventually kill me but my heart will stop way before then?” I replied.
Dr Crusic nodded back at me, there was a genuine sadness in his eyes. Or maybe it was merely a reflection of my own. We sat there in silence for minutes.
“We have an excellent counsellor here on Summersome, if you feel that you need to talk someone about this Jack, I can heartily recommend her. She will be able to help you. Would you like me to ask her to stop by tomorrow morning?” he asked standing up and making his way to the door.
He stopped at the open doorway and looked at me waiting for a reply.
“Yes, I would like you to do that please. Can I ask you something before you go?” I asked.
“Sure, how can I help?” he said closing the door and sitting back down opposite me.
“I’ve had…very vivid hallucinations in the past, mostly induced by the morphine. Are we having this conversation real world or are you, everything right now nothing more than an hallucination?”
Again, there was a sadness in his eyes. It was definitely there but of course if this was another illusion of mine then it was nothing more than something I had created.
“Jack, I understand why you would ask a question such as this. It is hard to comprehend or accept ones own passing, far easier for you to think that this conversation never happened. Dr Hardy, our counsellor would be able to help you with this and many other emotions and questions that you may have now and in the days ahead. I really think you should speak with her” he replied.
I nodded to him, didn’t feel anything else needed to be said.
“Is there anything else I can help with or get you before I go Jack?”
“No thank you doctor, I’m okay I think” I replied.
“I will check back on you in three days time, it was good to meet you Jack. Of course, should you need anything make sure to ring your room bell and one of the nurses will be right with you. Good bye” he said. Then he was gone the door slowly closing behind him.
I returned to looking out of the window, the rain was now much heavier and drumming against the windows. Rivulets of silvery beads battering the glass then finally falling away leaving no wake. I resumed my music application on my laptop, Visage Fade to Grey started playing quietly.
Another knock at my door and the nurse cheerfully asking to take my vitals. Blood pressure, a device they put over my finger, still not sure what that measures. Then the prick test. She asks me which finger and I hold my ring finger to her. Sharp pain and then she’s saying goodbye and out of the door.
Laying back on the bed and pulling the blankets over me, I was lost in my thoughts and closed my eyes. I felt a slight pressure on my shoulder, opening my eyes there was a nurse standing over me. Still very much drowsy I offered my arm to her.
“Jack it’s okay I’m Dr Hardy, I’m a counsellor. Dr Crusic asked me to stop in to see you before I left as he was concerned.”
She was leaning slightly towards me smiling. She continued to rest her hand on my shoulder, reassuring me. Dish water blonde tied up, down I imagined scrambled yellow hair cascading over her shoulders. She had tattoos down her arms, her ears pierced several times with hoops and studs. She had grey green eyes, not cold though. Petite but not a waif. I would guess she was late twenties, possibly a youthful early thirties. She had an energy to her, one that I could well imagine would be contagious.
“I wanted to introduce myself and ask whether I could have a chat with you tomorrow at eleven o’clock?” she asked.
This felt like a real experience, that she was really there. However I have been greatly deceived by my mind before as I have mentioned.
Another knock at the door and the nurse came in again cheerfully announcing it was time to check the vitals. I asked her that she had only just done that hadn’t she, I mean it felt like only fifteen minutes since I had last seen her.
“Oh bless you, two hours ago Jack, you had fallen asleep” the nurse replied as she wrapped the sleeve around my arm.
Turning to Dr Hardy, “that’s fine doctor, eleven o’clock tomorrow is perfect for me. As you can see I have busy schedule here each day but I’m sure my eleven slot is clear” I said jokingly.
“It’s a date, I will leave you with Claire and I will see you at eleven. Good bye Jack”. Dr Hardy left the room, pausing at the door to glance back at me and smile.
Nurse Claire had been talking to me but I hadn’t heard a word of it.
“Sorry Claire, I was miles away, what did you say?”
“My son listens to this band, he used to play this song all time when he was a teenager. Lovestruck teenager” she said raising her eyebrows and sighing.
“It’s Marillion and the song is Cinderella Search” I said.
“Yes of course, Marillion. I remember now. He would sit up in his room listening to this song endlessly.” She pauses for a moment. “Vitals are all good Jack, it will be Chloe taking over for the night checks. Have a good evening” and with that she was out of the door.
“Welcome to the Circus” I said to myself and went back to staring out of the window. Neither one of us (wants to be the first to say goodbye) drifted lazily around the room. I pulled the blankets up to my chin and closed my eyes. I could hear the rain pelting the windows once more, it was going to be a long night.
The room went silent. Shouting from somewhere on the ward startled me. The toilet opposite my room flushed. The noise of a drip trolley gliding over the tiled floor. The heavy footfall of someone in the corridor. Screaming. The incessant beating of the rain against the windows. The thunderous sound of a crash trolley being wheeled outside in the corridor. The screaming came to an abrupt halt. The sound of something metallic hitting the floor. I pulled the blankets tighter around me.
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I am diagnosed with terminal stage 4 colon cancer that has metastasised to my liver. I now have Type 1 or Type 2 diabetes and as a result of the colon cancer, I have an ileostomy called Elvis.
Ulcerative Colitis Warrior Akeso Eclipse enjoys the spring sun in the New Forest proving that she is unbreakable!
I was laying on the bed slightly propped up so I could give Elvis, my ileostomy, his wash and dress him again for the day. I’d covered him up with a warm tissue while I cleaned the old adhesive off my stomach. I need to cover him to contain any projectile output that he decides to launch while I am bathing him. Once that happens to you, you never get fooled again. Although cleaning output off the wall wasn’t the best start to the day, I can’t hold it against Elvis. He keeps me alive. There’s a lot of information about why and what an ileostomy is, however to be concise I can summarise it thus; it’s a section of your bowel that normally is inside your body that has been placed outside of your body surgically. It is then superglued to your tummy to make sure it doesn’t run off in the night.
When I was able to understand what had happened to me and why, I was strangely curious. Up until that point all stoma care had been carried out by the nurses. Bag change every two days, using the template to cut a new one. Cleaning and finally replacing the bag had all been done while I was sedated. The template is normally cut by a stoma nurse, in my case Sharon had seen me as soon as I had come out of surgery. Visually measured up the ileostomy, cut the template and tested to make sure it fitted over snugly. From then on, you would place the template over a new bag, draw around it and then cut along the line. This would ensure that each bag would fit perfectly over the ileostomy every time. Eight months down the road from then, I didn’t need a template, I could cut the bag exactly. Practice really does make perfect.
When I was at home, my partner would help me with the cleaning process and also applied an adhesive ring around Elvis. This was to protect my skin from the output. Elvis, being the mucky puppy he is, didn’t mind being covered in output as he was designed to handle it. My skin wasn’t so we had to protect it, the adhesive ring did that. Once she had placed that around Elvis, the new bag would be placed over him and onto the ring.
The old adhesive was proving stubborn, another warm disposal cloth was needed and a quick blast of the anti-adhesive spray. I was busily wiping away a blob of adhesive when there was a knock at the door and Dr Hardy came in. She stopped in her tracks when she saw me, glanced down at my exposed chest and stomach and realised what was taking place. She smiled at me and reached for the door handle.
“I’m sorry to disturb you, I will give you say…ten minutes and wait at the nurses station. If you do finish before then please come and find me?” she said. Dr Hardy stood in the doorway. I nodded to her and she was gone.
I would say to her that I wasn’t bothered if she wasn’t but I had quickly learned that there were somethings in a hospital environment that were still considered private. Cleaning your ileostomy was one of those sacred things. Besides, unless you are a stoma nurse, you probably wouldn’t choose to be in the room simply because of the smell. And to be fair, you wouldn’t invite someone into your lavatory while you were sat there squeezing one out. It made sense, albeit in a roundabout way.
I had just about finished but needed the warming blanket over the bag to ensure a decent adhesive stick to my tummy. I decided to find Dr Hardy and could have the warming blanket on while we spoke. I double checked the plastic foot of the bag to make sure at no point was it already coming off, slid off the bed and made my way to the nurses station. Ann, Dr Hardy, was talking to Vashti, she glanced and saw me coming up the corridor towards her. She waved to the nurses and met me half way.
“All okay with young Elvis?” she asked.
We arrived outside my room and I held the door open for her. She paused for a moment, smiling she went in with me following. The door quietly shut behind us.
“Elvis is fine thank you. Doing what he does and doing it well. I think I am used to him now and the various routines I need to do to ensure he remains healthy” I said.
“That’s good to hear Jack. Some people initially have significant issues and problems with an ileostomy. They find adjusting to it hard and they become somewhat resentful. However it is good that you have adapted and you are getting on well with… Elvis” she said grinning broadly.
It was the name, Elvis. I had called mine Elvis as soon as it became appropriate. Partly because he is a superstar, and partly because it was a name that everyone remembered. The hospital staff, the district nurses that came to see me at home, the doctors and close friends who knew about my medical condition. They never forgot Elvis. That was the point I think. They may not remember me after I’ve gone but they would remember that someone called their ileostomy Elvis. And that made me smile.
My laptop was quietly playing Magnum’s Start Talking Love, I hadn’t noticed up until this point that I had left it on. Many years ago a rather seedy fellow had grunted at me that Magnum was the rock band for boring old men. This coming from someone who listened to a funk jazz you would normally hear in a lift or strip club. I may have an eclectic taste in music, but essentially it was music and not the shit he would try and subject me to when he would come round to my flat on a Friday evening.
I reached over to the laptop to stop the music.
“I don’t mind the music Jack, please leave it playing” she said.
I pulled my hand away from the laptop and got myself comfy on the bed while I arranged the warming blanket over my chest. Ann leaned across and straightened the blanket for me, I flicked the switch on the control and lay back. She went over to the chair and pulled it closer to the side of the bed. Sitting down she produced her notebook from her pocket and leaned back in the chair as she turned the pages over.
“How are you feeling overall, you’ve been here for quite sometime now. Dr Crusic was going to discharge you in the middle of this week but after your tumble the other day he has decided to keep you in for further observation”
I shrugged. “I’ve been here so long now it’s beginning to feel like a home away from home. I don’t give it much thought really. I’m remaining positive I think and doing what I can to keep active. All distractions I suppose from considering the inevitable” I replied.
I wasn’t sure I had really answered her question, it was somewhat a moot point these days. How I was feeling overall was no real measure of what was going on inside of me. Right up to where the cancer had dropped like a fucking anvil through my colon, I had been feeling absolutely fine. When I had been sat down and explained in detail what had happened to me I remained stoic, my partner had tears welling up in her eyes. On reflection, I was most likely in shock. Shock that I had to confront my own mortality and shocked that a cancer was squatting and growing in my body.
The warming blanket was beginning to get a little hotter than I wanted. I reached for the control, thumbed it off and lay back again. I gave Ann a sideward glance. She was writing in her pad completely immersed in what she was recording. Ann looked up from her notes towards the laptop, she glanced back at me.
“Have you at any point considered the… inevitable” she asked.
“Sure” I replied. “Sleepless nights mostly are when those thoughts creep in. It’s the circle of life and some get called young and some get old and ugly before they are called” I added.
“Are you religious Jack?”
“Was I suppose. I have been christened and confirmed, Church of England. My grandparents, they brought me up mostly, my Grandad was religious. I studied RE at school for O and A level. You could say I had more than a passing interest in world religions and specifically C of E.”
“You said ‘was’, do you not consider yourself religious now, or should I say…”
“I’m not now, no” I said cutting her off mid sentence.
Ann tapped her pen on the pad and fixed me with her eyes. I folded up the heat blanket and tossed it onto the shelf beside me. I pulled up my layers so I could feel around the seal of the stoma bag. The join to my stomach was sound. It would last the day and a half. Fingers crossed!
“That was quite a stern ‘no’ Jack, have I offended you asking about this?”
“Not at all Ann. It’s a case of the more you study religion the more it loses its quantifiable value. For me anyway.” I could have said more, a lot more but I thought it sensible not to further elaborate.
She leaned forward placing her notebook on the side of the bed. She clipped the pen to the top of the pad and gently eased herself back into the chair.
“If you ever feel that you would like guidance then please bring it up in our sessions. I know the vicar here at the chapel, he will listen to you no matter the subject. It might be an avenue of comfort you have not considered”
If there was a God and I am not saying there is or isn’t, they will eye me with great suspicion. Forgiveness only goes so far and I had said and thought some really quite contemptible things about religion. In my foolish youth I had become quite hostile to organised religions. I would argue with friends who were religious. I would argue with my vicar. When it came to the topic of religion, I would argue with anyone. By doing so, I was announcing to everyone that I was a complete and utter twat. I didn’t get it and my ignorance was on display for everyone to see. It was shameful behaviour.
“Jack? You’ve left me again…” she said interrupting my thoughts.
“That’s very kind of you Ann. Maybe I will stop by the chapel and introduce myself”
Her hands dropped to her thighs with a slap, a rather understated clap. She smiled and placed her hand on my shoulder. It was a reassuring gesture I had grown to like.
“Let’s leave it here for today and continue tomorrow?” she asked.
Ann picked up her pad, slipping the pen into her breast pocket once again and headed for the door.
I reached for the bed control and raised the backend up. It was hit and miss, there was a sweet spot. If you didn’t get it just right after a while the angle would become ultimately painful. I reckoned I had got it just right but time would tell. Trying to hook the control back onto the bed frame I thought I had it and let go only for it to clatter across the floor.
“Fuck it!” I spat.
…and Neither One Of Us (Wants To Be The First To Say Goodbye).
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I am diagnosed with terminal stage 4 colon cancer that has metastasised to my liver. I now have Type 1 or Type 2 diabetes (still waiting on diagnosis) and as a result of the colon cancer, I have an ileostomy called Elvis.
Well what a ride the last 14 months have been. As some of you know I suffer from several Autoimmune diseases one of which is Crohn's disease. I was meant to have an ileostomy 14 months ago but some how a form of vasculitis affected my kidneys and put me in hospital for 5 weeks cancelling the ileostomy ! The rest of the year has been spent fighting that including a session of chemotherapy. Vasculitis finally dealt with then meant I could go ahead with the ileostomy surgery which I had on the 13/04/2017. I woke in intensive care in East Surrey Hospital where I spent 6 days The operation was a success but not without its problems due to another auto immune disease I have called Ankylosing Spondylitis. This made things very difficult for the surgeon to work. I am still in hospital with 2 infections inside where the small bowel leaked and the operation site had to be reopened as well to allow a vacuum type dressing to aid the healing. I've been dragging tubes and portable vacuum machines around now for the best part of three weeks with no end in sight.
I have photographed very little in the last year and missed my hobby greatly but also felt so ill it was not top of my to do list. The reason I'm writing this is also for my record of this period of time which has been so difficult. I don't do blogs or vlogs but I like Flickr to keep timeline of what I've been doing over the years. One day I will look back at this miserable time and know I've moved onwards with my hobby. I have a few things now to get used to after surgery but it's not forever I've been told and in a year maybe things regarding the ileostomy can be reversed.
I have been looking when I can at the work of the people I follow during this difficult time but Im sure you understand its been very tough finding the enthusiasm. Thanks for reading my tale of woe 😉👍
In May 2004 I underwent major surgery to have my Large Intestine (Colon) removed after being ill with Ulcerative Colitis.
Over a year later, they have shown me photos of the diseased and discarded meat, which I found incredibly interesting!
Next week I go under the knife again where the wonderful surgeons will get artisitic with my plumbing in an attempt to "reconstruct" the missing pipework!
Wish me luck!
(p.s. these are obviously low quality pictures, I took a photo of the original with my cameraphone, I have requested the originals from the hospital...!)
Haha!
Highest position: 488 on Thursday, December 14, 2006
Mellow day in minor surgery and breast clinic followed by what should have been another "easy" call night...instead spent the entire night in the OR- finally to sleep at 5:30am after ER consults, three appys and a sigmoid colon resection/ileostomy.
My 14 year old daughter has spent 6 weeks in and out of hospital and ended up having major, life-changing surgery and has been so strong. I am such a proud father and this image was taken today as she wants to show others that even after having her bowel removed and suffering a major seizure She is proud of who she is now. Her ileostamy saved her life and will be part of her life now and forever.
*takes a deep breath*
When I read that today's prompt was "brave", I knew what photo I WANTED to use. I just didn't know if I was THAT brave. As it is, I cropped one of my photos heavily. It's scary to show this, and I also didn't want it to seem like I was looking for sympathy. This IS the bravest thing I could share, so here it is.
On the left is a picture of my stomach (too big! scary!!) and my ostomy bag. That bag has been a part of me since New Year's Eve 2009, when I lost most of my colon to ulcerative colitis; the rest of my colon was removed in June 2011, making my ileostomy irreversibly permanent. There's just a tiny bit of my scar showing there - it's about ten inches long. That bag will be with me as long as I live - I cannot exist or even leave my bathroom without it. I am grateful because it saved my life, but I also hate it.
On the right: I decided to try dancing a bit, since I'm self-conscious about that and don't like doing it in front of people. The blur of the background also reminds me that so much of my life (especially my health) is uncertain and out of my control - more scary stuff.
So . . . this is me, trying to be brave today, and trying not to feel guilty about sharing so much.
Full surgery documentation now located at: www.jpouch.net/photos/surgery-1/
Here is a shot of the belly and stoma on Day 8. You can see he has a bit of irration from the adhesive of the bag wafer (not sure how to treat that, any suggestions are welcome :)
Oh, the question we asked was how much does the large intestine and rectum weigh? Only a few pounds is the answer, it is about 5 feet long but light weight. And no, after the colon is removed the stomach does not collapse and fall in, a person without their colon does not look like they have no colon!
Again, these are his 5 incisions, and his stoma will change size b/c it is swollen right now. Apparently stomas change size as your weight fluctuates. Stomas bleed some when you clean them or touch them, but it doesn't hurt since it has no nerve endings.
At the south incision in the pelvic region there is some swelling on the left side around the incision, that is fluid left over that was once draining from the drain tube. It makes a funny hollow sound when he taps on it. The doctors said if the incision becomes red or painful to come in and have it drained, so far not red or painful.
A surgical procedure to disconnect the lower part of the small bowel from the bowel and pulling it through an incision in the abdominal wall is known as ileostomy surgery. There can be various reasons that your doctor may choose to give you an ileostomy. Those reasons mainly include ulcerative colitis, Crohn’s disease, cancer, and familial polyposis.
The main aim of an #ileostomy is to divert the passage of wastes away from the colon and towards an opening in the #abdomen. This opening is known as a stoma. The surgeon does it after removing or resting the diseased part of the bowel. It allows bodily wastes to leave the body through the stoma. This surgical procedure is generally a lifesaving operation.
Another type of #intestinal #ostomy is the #colostomy, which involves pulling out of a part of the colon. The surgeon, during colostomy surgery, dissects the colon to separate the healthy section of the colon from the diseased part. He then pulls the healthy end out of a cut in the abdomen to create a stoma after removing or resting the diseased section. The surgical technique to create an ileostomy is the same as that of a colostomy.
Ileostomy surgery
The surgeon puts the patient to sleep by administering general #anesthesia. The place of the stoma will depend on the site of the illness and the patient’s preferences or needs. The incision to start the procedure is usually 8 inches long down the midline on the patient’s abdomen. This incision dissects the abdominal skin, muscles, and subcutaneous tissues. The procedure may involve the removal of the #colon alongside or excluding the colon and rectum, depending on how much the disease has spread. The surgeon also closes the anal canal with the help of stitches.
An ileostomy can be temporary or permanent, based on the type or severity of the disorder. The two basic types of permanent ileostomy are a convention and continent ileostomy. The convention or Brooke ileostomy necessitates the patient to wear an ostomy bag the entire time. The stoma drains all the fecal materials into the ostomy bag. With this ileostomy, you are going to have no control over when you move your bowels, as a stoma doesn’t have any #sphincter #muscles. A continent ileostomy consists of an internal reservoir inside the abdomen. There will be a stoma on the belly, but it will not need an ostomy bag to cover it. You will be able to draw waste materials out of your internal pouch through a flexible catheter. The two types of continent ileostomy include a Kock pouch and BCIR.
Contrary you what you may have been thinking, an ileostomy gives you a chance to start a healthy and happy life after getting rid of the life-threatening condition. Some people acknowledge that their ileostomies have helped them to be even more active and healthier after the procedure because their quality of life was not that good before surgery due to illness. It all comes down to the mindset.
If you have a bowel condition so severe that your doctor recommends an ileostomy, be sure to discuss everything and clear your doubts instead of being stressed about the prospects of losing a body function.
In May 2004 I underwent major surgery to have my Large Intestine (Colon) removed after being ill with Ulcerative Colitis.
This is a picture of the scar and stoma a couple of weeks after the op.
Next week I go under the knife again where the wonderful surgeons will get artisitic with my plumbing in an attempt to "reconstruct" the missing pipework!
Wish me luck!
Here is a fairly graphic photo of Stumpy in action. The bag is located towards the inside of his leg so you can empty the bag in the toilet without hassle. This bag is really full, normally you don't leave it so full b/c it would be heavy and run the risks of 'blow out'. Mark's hand is by the bag to give you an idea of scale.
Here is the bag prior to being put over his stoma. You can see it is a two piece (there is an option of 1 or 2 piece). Mark's is two piece b/c his stoma is smallish and so this helps pop it out more. Here you can see the scale as well. Bags come in all different varietis and some are not clear, etc..... The clip on the end (long tan thing at end of bag, he uses this to drain throughout the day, he is draining every 2 hours or so. He only changes the appliance (i.e. the full bag set up) twice a week). There are tons of different bags for different types of stomas, Mark's stoma is loop ileostomy which means it is smallish since it is temporary.
We've recently learned from another jpoucher that there are bag options where there isn't a clip at the bottom but velcro. If you aren't happy with your hospital register bag and equipment, do some searching because there are MANY bag options.
Summersome ward has approximately twenty six patients when at capacity, mostly it had seventeen or so. Of those, five were long term patients like myself. We would pass each other in the corridors and greet one another, asking how we are but never enquiring about details. We all knew each other to some degree. I knew some better than others. On nights I couldn’t sleep I would sit with the night shift nurses at the station where others would be. We would talk about a wide range of topics. Despite the differences in opinions we were all united in one thing. There was a camaraderie because each of us there were fighting a weapons grade cunt called cancer.
I hadn’t slept in the night so ended up at the station where I learned that a long term patient had died in the early hours. She was a lovely lady, a fight in her that burned behind her kind eyes. She had been progressively weaker over the weeks. However nothing prepares you for their death. Nothing. You can’t help but get emotional, at this stage in my life I have given up fighting back the tears, clenching my jaw in defiance of the emotion that wells up from deep inside. I will miss her.
There was a knock on my door and Dr Hardy came in. Smiling she pulled the chair closer to my bed.
“It’s good to see you again Jack, how are you?” she asked.
“Dr Hardy, is it eleven already? Time flies when you are having fun I guess. I’m okay, no real pain, a few new bruises from the insulation injections.” I replied.
“Please call me Ann, I prefer less formality. Do you mind if I sit down?” she asked.
“Of course not, please do” I said motioning to the chair with a nod.
Pulling the chair further towards me she sat down and wriggled to get comfy. Crossing her legs she rested my medical notes on a knee and began turning over the pages.
“Major abdominal surgery, bowel cancer metastasised to the liver, pancreatic internal bleed. Diabetic. Chemo toxicity. You’ve been through it” she said casting a confirming glance at me.
“It’s been quite a ride” I replied.
I still wasn’t sure whether this was real world or the morphine again. The afternoon before she had touched my shoulder though, I had felt that. She was real therefore this wasn’t a hallucination I concluded. I would open up to her.
“Also have erratic heart rates that Dr Crusic has concerns about. Full house I guess” I added and smiled at her.
Ann got up and replaced the notes at the bottom of the bed, sitting back down. She crossed her legs again and leaned back in the chair. She pursed her lips.
“How do you feel following that conversation with Billy, sorry I mean Dr Crusic?”
I paused to think about this. I hadn’t really determined how I felt about it. Sounds ridiculous I know but I really hadn’t.
“I appreciated his direct approach in stating the facts. I don’t want to sound complacent to any of this, I accept I’m on the clock now and I have fantastic teams all helping me fight to stay alive. I appreciate every single one of them. However I know I could die at anytime now. Deep down I’ve known and accepted this when I was first told the seriousness of my condition.” I said.
Pausing for a moment I glanced at Ann. She was regarding me carefully but said nothing and in doing so encouraging me to continue.
“Without rambling on… I think that accurately describes how I feel about the conversation we had, and indeed how I feel now. I have my distractions, my blog, my music, and my exercise. All of these I believe keep me sane, objective and a desire to keep fighting. I have my memories.” I concluded.
“Is that your greatest fear as of now, death?” she asked as she rubbed her leg, one of those itches that just had to be scratched I guess.
“Not really no. Sepsis closing down my organs and the excruciating fucking pain. The many times I have been so ill that it was unlikely I would make it through the night. I think any fear I had of death… well I would just say it’s not a fear I have. My greatest fear right now is that I am ignoring someone so very near and dear to me” I said.
“Do you mind if I recline the bed a little, I am finding sitting up like this to be rather uncomfortable on my bum” I asked glancing back to her.
She reached for the bed control and it began to flatten out.
“Say when?” she said.
“When!” I exclaimed smiling back at her. “Thank you, that’s much better.”
“Who are you ignoring and why Jack?” she asked as she attempted to replace the control on the hook, missing it several times before finally finding the right angle so it caught.
You ought to try doing it in the dark, on morphine and while laying down, most of the time the control ended up on the floor shortly followed by me muttering ‘fuck it’.
There was a knock at the door and Caitlin appeared, time for the vitals. Caitlin was really kind with me, would always stay and chat. She saw Ann was sat at my side, greeted her and said that she wouldn’t be long.
“Short pain” Caitlin said as she pressed the button, the lance launching the needle into my finger.
“How come you don’t say sharp scratch, I was under the impression that was the default announcement before stabbing anyone” I asked Caitlin, offering her a smile.
She looked up from the monitoring phone and appeared to be considering my question. Apple iPhones by the way, it seems there is no industry that they haven’t penetrated with their kit.
“It’s not really a sharp scratch though is it, more like a little prick” she giggled.
Packing up the trolley she made for the door. Stopping in the open doorway, “but we can’t say little prick, it sounds rude” she added.
“I’ve been called much worse” I said after her. The door quietly shut and I was left with Ann looking at me with what I would describe as a rather quizzical expression.
“It’s true, I have been called much worse in my time. Most of it underserving I hasten to add, some of it I did deserve. Certainly no angel by any stretch of the imagination” I said.
Ann bowed her head laughing. Scratching that leg again she looked up and gave me a friendly smile. Running her fingers through her ponytail I sensed she was wondering what to say. However she wasn’t wondering at all, she probably knew what she was going to ask three or maybe four questions ahead.
“You had said your greatest fear was that you were ignoring someone important to you. I had asked who it is and why you feel the need to ignore them?” she persisted.
The feeling came over me very quickly, this was not a subject I wanted to discuss with anyone. I was ashamed of my actions. I needed to say goodbye but the hurt I knew I was causing to someone who did not deserve it. I could feel myself closing off, becoming guarded as if Ann had asked a deeply personal question. Which she had. She just didn’t realise maybe.
“Would you mind if this conversation was discussed at a later point, I don’t mean to be rude or appear unappreciative of your help and time. It’s because I am so ashamed of myself for not doing what is right, that it is hard for me to put this into words. Coherent words I mean. Coherent enough to convey the who and why” I asked.
“Of course. When you are comfortable with talking about it you can let me know. If it weighs heavily on your mind then I would recommend that you share it. It is clearly important you” she replied.
I quietly thanked her, not lifting my head from staring at the bed sheets. Now this was fucking rude of me. Ann wanted to help. I looked at her, into her eyes as tears rolled from mine.
“Jack, I am going to let you rest now. I will call in to see you tomorrow around the same time if that’s okay with you?” she asked placing her hand on my shoulder.
“Yes please, thank you Ann. I will look forward to that and I am so very sorry for all this. I don’t know what has come over me” I replied.
“You have nothing to apologise for Jack, I am here to help you where I can, whatever the issues” she said. The slight pressure from her hand went as I closed my eyes, the sound of the door quietly closing. I tapped the music app on the laptop, set it to shuffle and tried to sleep.
I vaguely remember Caitlin coming in, offering my arm for the vitals check. She was humming along to Pauly Fuemana’s ‘how bizarre’ playing on my laptop. It was a soft hum that relaxed me, sending me back to sleep. When I finally did open my eyes, the room was dark except for the small light that remained on all the time. I had slept through the rest of the morning and all of the afternoon.
A knock at the door. It was Clarissa. “Can I get you a drink love?” she asked.
“I’d love a highball Clarissa” I replied grinning.
“What’s a highball, never heard of that? Is that one of those funny coffee concoctions because we can’t do anything clever with the hot drinks I’m afraid”
“Typically, a highball is a shot from each bottle across the optics, a splash of mixer. If you ask for one in the Viper Room that is.”
Clarissa boomed out her contagious laugh. “You would be so lucky love, I can offer a cup of tea, white, two sugars?” she said still laughing.
“That would be perfect, thank you. Oh and if you see anyone from the diabetes team, don’t mention the sugar?”
She winked at me, the door slowly closed behind her.
And John was belting out God Save the Queen. Indeed John, God save her.
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I am diagnosed with terminal stage 4 colon cancer that has metastasised to my liver. I now have Type 1 or Type 2 diabetes and as a result of the colon cancer, I have an ileostomy called Elvis.
Mark started creating output from Stumpy the Stoma the following day after surgery. It was pure liquid and green (b/c he was on a liquid diet, not sure why it was green though - I know the drs. explained why but can't recall now). I put my finger in the picture so you can have an idea of scale.
The surgical procedure in which the surgeon brings an end of the small #intestine out through the belly is known as ileostomy surgery. The end of the small intestine sticks out on the abdominal wall to form a stoma. An ileostomy can be temporary or permanent.
You may require a temporary #ileostomy if your lower bowel needs to rest for a specific duration to heal. Ileostomy surgery is generally a part of colorectal cancer surgery, diverticulitis surgery, or J-pouch surgery to treat familial polyposis or ulcerative colitis. The surgeon will most likely construct a loop stoma to give you a temporary ileostomy.
You may need a permanent ileostomy if your large intestine needs to be removed, or your anus stops functioning due to a severe condition. Reasons you may need a permanent ileostomy may include Crohn’s disease, #colonic dysmotility, ulcerative colitis, familial #polyposis, and some #cancers. You will probably need an end stoma for the permanent ileostomy.
Caring for ileostomy
Caring for your ileostomy almost entirely involves the use of the ostomy pouch. For this purpose, you may be looking at a wide range of options to pick the one that fits your requirements and lifestyle. You will be able to purchase ostomy supplies from local medical supply stores or by ordering online.
Living with an ileostomy
All you need is to remain motivated to get back to your healthy self after ileostomy #surgery. Once your bowel recovers, you will be able to live normally. A few aspects of living with an ileostomy are worth mentioning here.
• Unless your job requires you to lift heavy objects, you should be able to return to your workplace. There will undoubtedly be some changed in your routine due to pouching requirements, but effective management won’t let these interruptions affect your work. You may also talk to your employer and coworkers about your ileostomy.
• Having an ileostomy doesn’t mean that you are going to have to say goodbye to your social life. You may be concerned about the leakage and odor, but the good news is that modern-day ostomy supplies prevent leakages and odors in the best possible way.
• The location of the ileostomy is just above the beltline, meaning that you can wear anything you want. Ostomy appliances remain flat with the belly. You can also wear an ostomy belt to keep your ostomy appliance snugly in place.
• You can resume your physical training regimen after ileostomy surgery. You are going to have to allow your bowel to recovery, though. You can play all sports, but make sure that they do not involve lifting too heavy objects because it can cause harmful stress on your stoma. You can talk about it with your doctor or ET.
• You may have to commit to a selected diet plan right after surgery, and continue with it until your bowel fully recovers. Once your bowel heals, you can start introducing your favorite foods back into your diet.
It is best to remain in touch with your #ostomy care nurse and doctor. Managing an ileostomy is not hard. You just have to have the right information. Your doctor and ET are the authentic sources that can provide you the accurate information about how to live with an ileostomy or any other kind of ostomy.
Full surgery documentation now located at: www.jpouch.net/photos/surgery-1/
Spending some time recovering, he is clean out of the shower and doing well on Day 8. He has lost 7 pounds since he entered the hospital, so he is a bit thinner than what he was in the first picture. In the hospital his first poop output was green, now it is brownin' up, but seems to change color with the food. And the smell when he empties the bag is something special, it has to do with the waste coming straight from the small intenstine and the digestive enzymes. Now, you must understand that the stoma is a living thing, it is his insides now on the outside, and this sucker breathes, moves around and really has its own identity. This is a unique experience gettting to see how our bodies constantly our creating waste, but also the meaning of 'alive on the inside' has new meaning when you see our insides working.
If you are so curious we do have a live action photo of the poop machine in action that I recorded on the cell phone. Low resolution but if you gotta see how the things moves and works before you are proud owner of your own, just send us a flickr email.
Update day 9: I feel exhausted still, today was the first day I took a short drive in the car (someone else drove) and was exhausted and uncomfortable. My lower back hurts from laying down since my sleeping positions are limited still. I've been walking and walking but still get tired. My poop is thickening up, but it is really a reflection of what I eat. I changed from a 2 piece bag to a 1 piece bag and that is working better for me now.
Update day 16: No complications, and I am so thankful, and I attribute this to my awesome surgeon and his possee. I'm not needing to nap, and I'm interested in going and being busy. It is a new concept to leave the house without worrying about 'bathroom' needs. And I did my first drain of the bag while out running errands, it wasn't too bad, only took 2 minutes or so, I'm sorry to have unleased the stench on the general public. I do feel like I'm in 'recovery' where I don't feel UC anymore but I do get worn out, and the reality of living with my stoma has kicked in. At first, I was free of the disease which is/was incredible, but now, there is the stoma. And as thankful as I am for my new renewed health, this will take some getting used to, I mean, my small instetine is hanging OUTSIDE my body and I'm pooping off my belly. Takes some getting used to, but UC was much much worse.
Next step in recovery process:
Step 2 surgery is pending until his jpouch heals, the doctors will decide around week 10 in recovery if he is ready for Step 2 or not. Once he has step 2, the stoma will be pulled back into his body (so no more external bag) and he will begin using his jpouch (small intestine reconstructed and connected to anus for draining of waste).
Ostomy is a tried and tested way to manage your waste excretion in case you are unable to do it through the natural bodily mechanism. But for many years, #ostomates remained worried about what would follow the ostomy surgery. I am talking about carrying the bag which collects urine or stool. Concealing that bag under the clothes is not something very difficult, but leakage and odor had really been the real concerns.
An ostomy mainly involves collection of bodily wastes through a #stoma which appears through the opening made in the abdominal wall. This stoma has to be exposed to the bag’s inner chamber where the stool or urine has to go. Leakage, which can also result odor emanating from the person with ostomy, can be quite a concern here. Aside from the odor, this leakage can cause irritation in the peristomal skin, skin around the stoma. The immediate disadvantage of this irritation is continuous pain and the ostomate’s overall inability to ensure better adhesion between the pouching system and the skin where pouching system has to be attached.
Thankfully, modern technology has been able to address this issue in quite an effective manner. If you talk about the supplies that were available a decade ago, you may argue their about inability to help you with the better ostomy management in a post-surgery scenario. But it is not the case anymore. You can manage your ostomy in much better way today. Modern technology has surely been very helpful but it has only a partly contribution to make in a case of successful ostomy management. The other half that you are going to have to work on is to make sure that you stay in contact with your ostomy care nurses. They are people who are equipped with every bit of information which you can use not only to prevent any issues with your ostomy but also to bring back things to normal in case you have got affected by any problem that tends to make the ostomy management a difficult affair.
The big reason why you need to consult your ostomy care nurse to get your #ostomy related issues addresses is that there are too many supplies available out there; and you don’t really have an idea what works best for you. For instance, there can be different pouching systems available for colostomy management; and each of those systems works in a specific way to benefit a specific type of colostomy case. Surely you don’t want to get confused here. All you have to do is to call your nurse for an appointment and ask them what solution will be the most suitable for you.
A very important part of your ostomy management is to have good knowledge about the suppliers from whom you can get your supplies shipped at your doorstep. That’d be great if there is a physical store nearby your residence. You can walk into the store and look through different options to pick one that is suitable for you. But adequate information about the suppliers can be more useful for you because it can give you the peace of mind while traveling away from your home.
#health
Ann Hardy, the ward counsellor sat quietly opposite, from time to time jotting notes down in her notebook. She glanced up to me periodically but she was intent on listening and recording the information I was relating to her. The conversation had come to a natural conclusion so we had been sitting in silence for a few minutes. She swapped over her crossed legs and held the top of her pen to her chin. Gently tapping it while reading back what she had written.
She looked up at me and smiled. An infectious smile that you couldn’t help smiling in return. Putting her pen and notebook on the floor she got up and went to the end of the bed to collect my medical notes. She began flipping over the pages and scanning each sheet quickly before moving on to the next. Licking her fingers to turn another page it appeared something had caught her eye as she paused on one specific page and continued reading further down the entries. I could hear her tapping the page with her finger, it was the only noticeable sound in the room.
The last few days had been quiet on the ward. The activity that I heard was the usual routines of patients and the medical staff. Trevor beating up and down the corridor for his morning walk, drip trolley in tow. The sound of the pharmacy trolley travelling over the tiled floor as it and the nurse pushing it meandered from room to room and then across to the open wards. More importantly and thankfully, the same number of people on the ward that had gone to sleep had woken up in the morning. We hadn’t lost anyone.
Ann returned to the chair and sat down, my medical notes in her hand. She reached down and collected her notepad and pen from the floor. Crossing her legs she balanced my notes and then her pad on a knee and continued to write. Pausing for a moment she tapped the pen on her pad and then resumed writing.
There was a very faint smell of the lunchtime food. It must be getting close to one o’clock, I was getting hungry and the aroma of the food was adding to that hunger. Summersome ward was a fairly new ward for cancer patients. The rooms didn’t feel like hospital isolation rooms, the wards were bright and airy. The most important thing for the patients was that it had its own kitchen and food preparation area. It was the only ward in the entire hospital campus where you could get a full English breakfast every morning, if you chose to do so. Which of course, I did.
I suspected that this was always an option because maintaining or gaining weight when you have cancer is a good thing. If you let it, the cancer will steal your weight, your energy, your will. Starting the day with a calorie rich breakfast was just another way to say ‘fuck you cancer’. All the food was good on Summersome. The ward also had a table full of all sorts of snacks, biscuits, crisps even sweets that we were all encouraged to help ourselves to whenever. The shortbread biscuits are my favourite, ideal for dunking in a cup of tea.
“Here it is, internal bleeding from the pancreas. You were taken for surgery off Bebbington. They operated on you for several hours to stop the bleeding. You had a transfusion to keep you alive, 4 pints in fact. Critical care notes that you were not able to maintain blood pressure” Ann stated disturbing me from my thoughts of food.
“Without the blood pressure medication and the transfusion you would have died Jack. However that is why you went to Critical Care again. You were close but you responded to the treatment after thirty six hours. You still had the fight in you” she added.
I knew all this. A surgeon had visited me on my last day in Critical Care and brought me up to date. It was a Critical Care nurse who alerted my surgical team that I needed to go into theatre immediately. My eyes had rolled back into my head and she had realised that something was very wrong. She saved my life. For this and so many other things, I am eternally grateful to all the staff at the hospital.
To the Critical Care nurse, she was just doing her job. Nursing staff do not get paid the appropriate amount to reflect the important work they do each day. It’s a real issue for me that I do get quite angry about. When you see first hand how hard the nurses work you can’t help but feel that a great injustice is being done.
“Jack? You’re miles away!” Ann said jolting me back to the here and now.
“I was drifting mentally. It was very rude of me. I do apologise” I replied.
“Do you want to take a break? It’s nearly lunchtime anyway. I can call back in later this afternoon and we can pick up where we have let off?” she asked.
“If you don’t mind, I would rather get this off my chest. Can we continue?”
“Sure we can if you are up to it. So far you have done a really well. It will make a difference. So to recap, after the surgery you said you first saw these…” Ann said as she looked down to refer to her notes. “…ghouls as you have called them?”
“I don’t see them as such, it’s a perception I think. They are a product of my subconscious, a manifestation of the cancer I would suspect. I would also venture to say that the manifestation is a symptom of the PTSD although I’m not an expert on any of that” I replied.
“You don’t see them but you have said that you have drawn them, wouldn’t that indicate to you that you are seeing them as a form?” Ann asked.
“Minds eye?” I suggested. “I know they aren’t there physically. They don’t speak to me and I don’t speak to them. They aren’t malevolent in anyway. I just let them be” I added.
“Please don’t ask me if they are in the room with us now, that is such an internet meme and one that I use regularly myself.” I said laughing. It was a very handy meme for irksome public figures who generally tweet absolute bullshit for whatever bandwagon they were climbing on.
She laughed with me but narrowed her eyes. Determining I suppose whether it was worth asking me if the ghouls were in the room, scampering about around my bed or the one that always sat on top of the small wardrobe. No bigger than a fox and the appearance of gargoyles, the ghouls likely the product of a misspent youth watching horror films that my subconscious borrowed from memory to represent the cancer growing inside of me. The mind is very powerful and it is moments like this you realise just how powerful and creative it can be. Especially when constantly poked and prodded by PTSD.
When I was first diagnosed with PTSD I had issues believing it. I associated PTSD with returning soldiers from fighting. The trauma that our brave servicemen and women suffer from fighting someone else’s wars is immense. What they witness is truly hell on earth, a constant nightmare that they live in. No one it seems is immune to PTSD given enough trauma to tip them over the edge. My diagnosis had been a matter of course.
“Jack! Well are they?” she asked.
“Are they what?” I retorted. I had been miles away again, not listening to her. She had gone there though, she had turned the moment into an internet meme.
“The ghouls Jack, are they in the room with us now?”
“No. They aren’t” I replied. “I only conjure them up when my mind is blank, not thinking about anything specifically. I guess that is why it’s always just before I fall asleep that I bring them forth in my mind” I added.
Her head cocked to one side as she scribbled a note into her pad and then looked back up at me. She took a breath in as if to speak.
There was a knock at the door, Clarissa came in carrying my lunch. I had forgotten what I had asked for this morning. She put the covered plate on my side table along with serviette wrapped cutlery.
“Enjoy your lunch” Clarissa chimed as she left the room.
Ann got up out of the chair and walked to the end of the bed replacing the notes and tucking her notepad into her pocket. Her pen slid into her breast pocket.
“I will leave you to eat Jack. It was a productive session today, I think we got to the root of some issues but there’s plenty more we should work through. I will call back into see you later this afternoon. Enjoy your lunch” she said leaving the room, the door quietly closing after her.
I lifted the cover off the plate, condensation had already formed on the inside and I didn’t want it dropping off into my lunch to make it soggy. Spaghetti bolognese. I was very hungry as well, I would polish this off very quickly.
And then it happened. The searing pain immediately started as I swallowed. It felt like how I imagined swallowing broken glass. I immediately stood up, it felt like the food was stuck in my oesophagus. Standing up didn’t help. My mouth started to water, I was going to be sick. I knew it. I quickly got a bed pan from the stack by my door, I was beginning to heave.
Leaning over the pan I reached for the alarm button and pushed it.
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I am diagnosed with terminal stage 4 colon cancer that has metastasised to my liver. I now have Type 1 or Type 2 diabetes and as a result of the colon cancer, I have an ileostomy called Elvis.
Here is the belly the day after surgery. Let us explain what you see here. His incisions were glued closed, so he doesn't have to go in for suture removal. There were 5 lapro incisions made:
2 North incisions (one is hidden under stoma bag by belly button).
1 South incision near the pelvic region where the colon and rectum were removed.
1 East where you can see the Jackson Pratt drain tube coming out of his belly with fluid mixed with leftover blood is where his temporary drain was. What you see in this photos is right after surgery and draining lots of fluid out, his isn't actively bleeding and the fluid in the belly cavity has a name that we can't remember, he was told this fluid was totally normal and it became much less as the days went on. He had the drain removed on day 5 (not painful to remove and there was a lot of tube in his belly. A resident surgeon just removed it right there in his hospital room bed).
1 West where the temporary stoma is located. The stoma looks like a peeled cherry tomato and it has no feeling since there are no nerve endings in the small intenstine. The stoma is the small intestine that has a slit in it to allow waste to flow into his ostomy bag. We just keep staring at the stoma, it is fascinating.
Full surgery documentation now located at www.jpouch.net/photos/surgery-1/
It is not very often I allow myself to be photographed and even rarer to take a selfie.
However recently I under when a Total Proctocolectomy with Ileostomy at Southampton General Hospital due to Ulteractive Colitis.
I hope by posting this photo it will raise awareness and also praise the skill of the staff at Southampton General Hospital