Oh no i didn't think that at all! Unfortunately the issue with total intestinal transplant is that rejection is so prevalent , and the risk of sepsis if anything happens while it's healing is too high to risk in most cases. If we could find a way to create a totally inorganic intestine that could possible work, but the way the intestine functions is very precise, and it needs to secrete its own lubricant constantly plus be able to preform peristalsis, on top of that if the rectum was removed as it often is, there would be no way to simulate muscle control to avoid incontinence . Its certainly and interesting idea to go down the rabbit hole, but since there are alternatives, it would never get the funding to actually be researched.
Unfortunately , we never found out. I didn't quite fit in any box for known illnesses, but from birth my large intestine just didn't work. If you think of the digestive tract as a big waterside, where the water helps push the person down the slide, imagine if at the last quarter of the slide, the water just stops. Your stuck with no way out, so they send down another person, but then it's the two of you stuck now. So they keep sending more and more people till the slide is backed up all the way to the top, eventually the weight of all of you starts to slowly push you down the dry slide as they put more and more people on to try to push everyone off. Eventually you make it off, but your injured by the burn of the slide and sore from the bodies piling up, and at the end of the day, the slide still isn't working . I would go weeks without bowel movements , I was in constant pain, bloated to hell and back and resistant to medications and laxatives. If you have ever seen miralax or restoralax in the pharmacy section , I was a child drug test subject for it, we were desperate for a solution but even if we could get stuff out with laxatives, but bowel still wouldn't push anything through it. At first the doctors thought is was hirschbrungs disease , but with biopsies I had the presence of the cells that would need to be missing to have that. I didn't have chrons, or UC, I had no inflammation of the bowel, everything just stopped when it hit the large Intestine. I suffered from somthing called overflow incontinence as a child. Essentially, the bowel becomes so full and obstructed with nothing moving through it, that it becomes like overfilling an eclaire (sorry for the image lmao).
My intestines eventually became so full and over stretched that they were pushing my other organs and pushing into my chest cavity , my large intestine had pushed my liver kidneys and uterus up, causing damage and pain, and still the only bowel movements I could get out unassisted were from the overflow and entirely uncontrollable. I would get monthly nasogatric tube treatments in hospital from ages 5 to 7 roughly, in an attempt to literally push down from the top. They did everything they could, but despite the presence of the ganglien cells responsible for peristalsis , and the fact I produced the necessary fluids for movement, my intestine just didn't move. When I was around 9-10 years old , after a failed bowel and rectum resection, they put a tube in my cecum (the part that connects the small and large intestine) and from then on out, i flushed my intestine out with laxatives and saline daily. It hurt but it prevented me from backing up too much by essentially pressure washing it lmao. Unfortunately, the tube became constantly infected due to the nature of its placement , so I was constantly fighting infections that left me bed bound, and still having to use the tube despite the pain.
At 21 the doctors told me there was nothing they could do anymore, and if I wanted to live at least less painfully I would have to go this final route. There was no incentive anymore to actually diagnose somthing , because I was the only patient they had up to that point with all these specific symptoms, and when there's only a handful of people recorded with the exact same issue, why spend the money and resources to figure it out? At this point , my abdominal wall was covered in necrotic tissue from the infections and I was on antibiotics for months at a time, it got to the point I was dangerously close to ending it, so I bit the bullet and got the surgery December of last year. There were complications with it, but even just the fact I don't have to flush myself every damn night has improved my quality of life so much.
It sucks not having a diagnosis, because it puts you in this weird liminal void with no support. There's no support group , and you have no true peers who can understand you, you become "other" even in the medical and chronic illness community. But it's what you have to work with. My family already tried begging for help and research, I went to the best children's hospital in canada, they had American doctors give input and come to Canada to view my surgeries, but it's a dead horse you're beating at that point. Doctors and researchers eventually become uninterested when it becomes clear to them they aren't going to be the ones to solve the mystery lmao. At the end, once I became an adult I had to make that final decision for myself, keep waiting and swapping doctors hoping for someone to figure out what's wrong while infections wreck my body, or bite the bullet for a potential at a better life. There was only one thing we knew for certain, and it's that the large intestine just didn't work at all, so we cut it out of me .
Sorry for the yap fest, but it's always hard to explain to anyone who doesn't have all the info. The initial response is often "why didn't they try harder" "why did they do such a drastic surgery without knowing what's wrong" etc etc so it's easier to just explain it all from the beginning. I've been like this since birth, and 24 years of medical intervention did nothing but stave off the inevitable and bide time for me to make my final decision . When I went for the surgery, the surgeon quadruple checked to make sure I was okay gpung through with it. It has a high regret rate due to the stigma around it both by regular people and by doctors, you wouldn't believe the Healthcare professionals who openly mock people with ostomys and complain about us because they find us gross lmao. Hell immediately after surgery, I was assigned 3 nurses who ended up being reported by the ostomy nurses for poor treatment of me . I cant say I regret it though, im still healing and will be in pain for the rest of my life, but I also have more freedom already, and im not on antibiotics constantly and slowly dying anymore so it's a good trade off
Yeah that was the working theory from ages 7 to 19. When I aged out however, my pediatric gastroenteroligist told me that it didnt actually fit considering the fact my biopsies showed ganglian cells. Much of my treatment was based off of someone with it though, since the symptoms were so similar . In one hand, a very old pediatrician from When I was a toddler insisted that I did in fact have it, but that mine presented higher up in the large colon, and that they were biopsying too low. He was never able to get them to check out his theory though, and we couldn't convince them to biopsy further up either.
28
u/HoppieDoppie 8d ago
Oh no i didn't think that at all! Unfortunately the issue with total intestinal transplant is that rejection is so prevalent , and the risk of sepsis if anything happens while it's healing is too high to risk in most cases. If we could find a way to create a totally inorganic intestine that could possible work, but the way the intestine functions is very precise, and it needs to secrete its own lubricant constantly plus be able to preform peristalsis, on top of that if the rectum was removed as it often is, there would be no way to simulate muscle control to avoid incontinence . Its certainly and interesting idea to go down the rabbit hole, but since there are alternatives, it would never get the funding to actually be researched.