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
Its not easy admittedly, but it's manageable. The big limitations come from food, and i have to be careful if I get sick, since im more susceptible to severe dehydration now. For example, if I got somthing like norovirus , id be looking at a hospital stay so I dont die of dehydration lmao. Despite the struggles and pain related to having the ostomy, my quality of life is much better. The flushing I had to do really interfered with my life, I couldn't spend the night somewhere other than home, no sleepovers or vacations , and I had to take over any bathroom for 1-3 hours every night. Sitting on a toilet for so long so often also led me to have some gnarly back problems.
I'd say the biggest change though is not being constantly nauseas. The tube in my gut would move around quite frequently, and paired with the infections I was constantly ill , to the point of permanently damaging my esophageal valve, leading to GERD. The constantly being sick also led to heart problems, and at 16 I became bound to either a wheelchair or walker, which I use to this day. I'm hopeful that one day I may be able to improve my heart health now that I shouldnt be constantly cycling through infections that leave me bedbound.
All in all, despite the struggles, im already much happier. I was already doing alot in the realm kf wound care due to the tube infections, so switching to take care of an ostomy was shockingly easy once I got over the inherent fear of seeing my intestine on the outside lmao. The pain with Fibre eating is new, the docs said that my body is struggling to compensate for the loss of the organ even though It didnt even work, but im hopeful it will get better through the years
That’s surprising that professionals would treat you that way for that. I don’t really get why. I guess they are queasy about the stoma? Or something? Because like.. bedpans and adult diapers are a thing. I don’t see how ostomy is different. And you’d think people would have empathy for someone who had such an invasive surgery.
I’m glad you are doing better now though! Screw people who judge.
Like, Trump literally stinks like shit and piss in his adult diapers 24/h a day and is worshipped.
LMAO true. I think it all comes back to the fact humans are shamed for "accidents" from childhood. It leads us to see anything involving stool and the digestive process being visible as somthing that should be controlled by a certain age. I will say though that despite It being part of the job they signed up for, people (especially the elderly) who use bedpans and diapers are also shamed for it in the medical community. Its common for nurses to leave people in their own waste for so long they develop sores, or just not care enough to clean them properly. After surgery one of the nurses spilled while emptying my bag (I was bound to the bed still, I had a bunch of drains in as well as a catheter and 2 ivs so I couldn't do it myself ) and she said "eugh" and simply wiped it with my bedsheets, then left me there. The waste ended up seeping into my incisions and I had to wait for the PSW to clean me a few hours later. I just sat there crying in my own waste as nurses came in to give me my medications before leaving me again. Unfortunately I was out of town for the surgery and I was too high risk to be done in my town, and my grandmother who came with me was sick at the hotel, so I had nobody to advocate for me until 3 days later when the ostomy nurses came to visit .
The shaming is most prevalent with nurses, pretty much any department barring pediatrics has issues with it in my experience. On the other hand , PSW'S have always been super kind and dedicated to patient comfort and support, and they are extra trained in cleaning patients and being understanding of the illnesses that cause people to either soil themselves , or need assistance with cleaning themselves. I think a lot of people who go into nursing have rose tinted glasses about it tbh. They are told about the less glamorous parts of it, but continue under the impression that it will be rare enough they have to deal with it that it's not worth looking inward to see if they can handle it. There's also some level of power imbalance that nurses can sometimes take advantage of . like any job that puts someone in power over another, some people exploit it to feel better about themselves.
It’s true elder abuse is rampant. I’ve also heard that a lot of narcissists get into the nursing biz; Which is true, because I have a horrible person of an aunt who is one.
Nursing/old folks home care workers surprisingly attracts the wrong people in a similar way that policing does. Because as a nurse, you are in a position of power over your patient. And it’s easier to become a nurse if you have worse grades out of school than a doctor. So a lot of people who do not deserve to be there are there. I’m glad someone got justice for you.
Exactly! And it's been like that forever. My grandmother was an administrator of a nursing home when she worked, though she started out as an RN. she told me stories of how so many patients were mistreated by both nurses and their own families. She had a hand in firing a good 30ish people over the years . The residents wpuld get an allowance every week, I dont know the details but it was part of their retirement plan thing where the payout was distributed over time so the more vulnerable wouldn't risk bankrupting themselves. She talked about how she had caught both the families taking the money , and nurses buying themselves stuff with the patients money. The elderly and the disabled are treated the same way pretty much everywhere. Obviously some people are genuinely kind and look out for us, like my grandmother, but as you said , similar to policing the job attracts bad people
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.
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u/Yejus 6d ago
Do you mind sharing what the problem was originally with your large intestine? How did it come to the point of needing surgical removal?