- Location
- Ireland
Difficult as this mabey, im 34 have been having major bowel problems from I was 16.
Diagnosed Coeliac Disease @ 16 major weight loss, multiple ulcers in upper GI tract, perforated Duodenum.
Multiple Tests also confirmed Hylebactor Pylori, which was treated.
From 16-18 was pretty ok... just usual Coeliac problems.
At 18 I had a appendix that decided to perforate, and not tell me! i assumed the pain was just tummy issues. Until after a week I started vomiting blood, black tar and feces... Not nice... 1st hospital was full, shipped to 2nd hospital. Where they spent another week deciding what the problem was due to it being in the wrong place.. After several seizures and being genrally at deaths door. They decided to do exploratory surgery... Where they found my appendix in the wrong place, and now just mush, my small bowel and large bowel needed resected and reformed. I ended up with a few meters less bowel but alive.
From then on its been a downward spiral!
Ive had a Diagnosis of UC & Crohns for sevral years. Ive ran the gauntlet of medication. Due to some other serious conditions, some meds arnt suitable.
I had a surgeon offer me a temp loop Ileo in late 2011 as a way to ease the pain as my bowel had totally stopped motility and was non responsive. It was great, till they realised after a few months as I gained some weight It wasnt formed right and was misplaced! AGGHHH
So 9 months later I had it reversed as it was overflowing and not functioning correctly.
The rest did the bowel good for a few months, I ate carefully and healthly. Then It just kinda went sideward last xmas!
It started with severe Diahrea, more severe cramps...
So started back with pain meds and such.
Eventually, its got to the point I can only really ingest lucozde sport (gatoraid).
The GI consultant suggested as all other options had been explored to re-do the ileo and finally give me a pan-protocolectomy! Wahoo says me. Now 2 months after seeing him im down to 55kg if not less. constantly on Oramorph as the skin patches dont agree with the brain/spinal injurys ive got.
So now to the important bit... When I see this consultant on the 30th, how do I demand a J tube, or TPN? Im really at the point of preforming surgery on myself, its taking so fecking long.. and even after the Ileo is preformed and large bowel etc is gone... How the hell am I ment to be getting nutrition ?
Cheers for reading...
Diagnosed Coeliac Disease @ 16 major weight loss, multiple ulcers in upper GI tract, perforated Duodenum.
Multiple Tests also confirmed Hylebactor Pylori, which was treated.
From 16-18 was pretty ok... just usual Coeliac problems.
At 18 I had a appendix that decided to perforate, and not tell me! i assumed the pain was just tummy issues. Until after a week I started vomiting blood, black tar and feces... Not nice... 1st hospital was full, shipped to 2nd hospital. Where they spent another week deciding what the problem was due to it being in the wrong place.. After several seizures and being genrally at deaths door. They decided to do exploratory surgery... Where they found my appendix in the wrong place, and now just mush, my small bowel and large bowel needed resected and reformed. I ended up with a few meters less bowel but alive.
From then on its been a downward spiral!
Ive had a Diagnosis of UC & Crohns for sevral years. Ive ran the gauntlet of medication. Due to some other serious conditions, some meds arnt suitable.
I had a surgeon offer me a temp loop Ileo in late 2011 as a way to ease the pain as my bowel had totally stopped motility and was non responsive. It was great, till they realised after a few months as I gained some weight It wasnt formed right and was misplaced! AGGHHH
So 9 months later I had it reversed as it was overflowing and not functioning correctly.
The rest did the bowel good for a few months, I ate carefully and healthly. Then It just kinda went sideward last xmas!
It started with severe Diahrea, more severe cramps...
So started back with pain meds and such.
Eventually, its got to the point I can only really ingest lucozde sport (gatoraid).
The GI consultant suggested as all other options had been explored to re-do the ileo and finally give me a pan-protocolectomy! Wahoo says me. Now 2 months after seeing him im down to 55kg if not less. constantly on Oramorph as the skin patches dont agree with the brain/spinal injurys ive got.
So now to the important bit... When I see this consultant on the 30th, how do I demand a J tube, or TPN? Im really at the point of preforming surgery on myself, its taking so fecking long.. and even after the Ileo is preformed and large bowel etc is gone... How the hell am I ment to be getting nutrition ?
Cheers for reading...
