I guess I can just start with an overview so that people know what's going on with me roughly as well as I do
I have a formal diagnosis of IBS, speculative diagnosis of Crohns. Gut rot as I affectionately refer to it. I won't go in to graphic detail about it but I will say that it's been an issue for so long and so much that I finally became unable to walk about 4 years ago due to just sheer pain of friction (if you know, you know). But that's only about a third of my problem. The wear and tear involved with the underlying condition caused a fissure that bleeds consistently, and I am pretty anemic as a result. Additionally (as if that weren't enough) I deal with debilitating stomach cramps and we're not sure why. They double me over and I'm not able to move around. The doctors prescribed me a pain medication that makes me only slightly more funtional but its a pretty serious deleriant so it is only very slightly more functional.
As you can imagine this has a pretty profound affect on my life and my function. I spend most of my time bed-bound. The state granted me a full-time, live-in caretaker a few years ago; A friend and partner that I care for deeply currently occupies the role but someday that will have to change. I haven't worked in 3 years really, a little here and there. Some comission art, and i make a little on patreon for posting my various things to the internet but nowhere near enough to sustain myself. The icing on the cake is that my diet has been significantly limited. I'm basically stuck on the low fodmap diet while avoiding some other trigger foods that correspond more to crohns sensitivities. It's difficult to make things that aren't bland.
The future is uncertain exactly but its unlikely I improve. I've recently had surgery that reduced the pain of walking but there are other barriers involved with prolonged walking. The symptoms that took away my ability to walk are likely to occur again in a matter of years unless i go for more surgical intervention which is a grueling process. I'm also not certain how many times I can actually get this particular surgery either. at any rate repetitive surgery doesnt seem sustainable in the long run.
That about sums it up i think. I'll continue to add updates here as things progress
UPDATE
It's June now...I think I wrote the previous post in february? my surgery was even earlier than that, October I beleive? I guess maybe I don't have as much time on my feet as I thought I would. What little success there was from surgery has been undone, the fissure has returned and with it will come all the problems that existed before. If I had to guess I would say I would be back to not walking much by the end of the year.
I'm trying not to be too frustrated about this. Mostly I am not actively thinking about it but I have moments of forced awareness that I percieve as quite dark and when I dwell on it I start getting that feeling that prompts me to take my anxiety meds.
Update - 8/14/2025
I have been transfered to a better medical facility, though my meeting with this doctor would not indicate that the care is all that much improved. All of my doctors seem to recommend conflicting lifestyle changes or put emphasis on doing things that make it worse and it's quite confusing to me. I keep being told to stand more which doesn't make sense in contrast to being told that I need to take strain off my injuries as much as possible, that straining my injuries will make them worse faster. They also consistently ignore the abdominal cramps because they can't find a source, they simply opt to treat symptoms, something we've already been doing for half a decade. I'm especially frustrated because they have recommended a similar surgical route again, and because of how the disability system works in my state I wont have much of a choice in the matter, lest they take my limited funding away and deny my overall claim. The doctor admitted directly that they didn't think this would fix me, that treatment would be repetitive and there is really only a 50/50 that it works. One aspect of the treatment is very invasive and doesn't really make sense to me. At this point I wish the doctors would just leave me alone. Like yes, its life altering and not fun to deal with or whatever, but repetitive invasive procedures with painfully long recovery times feels like an elaborate form of self harm at this point and I have 0 desire to engage in that. Fingers crossed I hit it big on twitch and no longer have to depend on the state for medical care and financial support. It really wouldn't take much to buy my freedom, honestly, like 2k a month would cover more than my basics. *sigh* ramble ramble. ramble over.