There's always quality of life vs acceptance and tolerance. Personally, in your situation, surgery would have been my option.
As the years go by I'm considering surgery more and more, but some things need to be ruled out first. My flares always follow the same pattern... 3-4 months of flare, 3-4 months of recovery, 6-12 months of medication-free remission and living life. The cycle repeats over and over and no MD has ever been able to tell me why. No medication, not even biologics, change this cycle.
The only model that fits is the infectious model. I am CMV+ and probably HSV 1 or 2 positive in my rectum. A cyclical virus would explain the timing and severity of my flares.
Infectious colitis should only be treated with colectomy if things like toxic megacolon or sepsis happen. The reason is that the infection could move to other organs once its preferred bowel tissue is no longer available. This is the #1 reason why I won't do a colectomy. Instead, I am next going to try antivirals like vancyclovir to see if they impact my flare at all. If they have major impact, then I know I have viral colitis and all I have to do to avoid flaring is to maintain a lifestyle that keeps infections suppressed.
I have tenesmus with all my flares...I call them white-knucklers.
Tenesmus is hell. What bothers me the most about
it is that I can't control it. I know the BM is done but my bowel just keeps clenching uselessly. It really makes me hate my own body sometimes. Like why are our bodies so stupid that the bowel would rather prolapse than just stop having a BM. Tenesmus is the only thing that literally makes me scream.
You do understand how UC works and where it would be at its worst?...because the rectum is its chosen place of hell. There are a few who have had surgery because of severe rectal inflammation, and it's not a joke or insult given as a suggestion.
Yes I know. There's a young man in my support group who got a colectomy and J pouch all because of 2 inches of inflamed rectum that would never go away after 5 years of treatment. He started with left sided UC that covered his whole descending colon. Years of meds got him 95% better except that last little piece, and one day he said enough is enough and got it taken out. I can't imagine what it must be like to be pecked to death by such a tiny piece of inflamed tissue.
It really sucks that they can't just cut out the inflamed piece and leave the rest. If they offered to take out my sigmoid tomorrow and leave the rest, I would do it in a heart beat. I understand why the don't, but... I have "indeterminate colitis" because mine is patchy, or at least I did until the recent pancolitis dx. I hate my sigmoid colon, hate it hate it. All my pain is right where the bowel makes its little turn into the rectum. If I could tear out just that piece, I'd do it.
I did more searching on nitroglycerin supps, seems ointment is more the norm.....although if you dont have inflammation @ visual and cant use steroid, they could be compounded.
I made the suggestion based on the fact you cannot use the steroid or mesalamine...but I may have misunderstood.
Yes, I can't use the other rectal meds... but maybe a compounded nitroglycerine in a very hypoallergenic base could work. Thank you for this suggestion!