I am here because I believe I had ulcerative colitis. I have had a diagnosis of IBS for the past 13 years, but in the past 2 years I have gotten way way worse. I sort of gave up working with the doctors on it. They seem to think because I am not "bleeding" and they can't see anything when they do a colonoscopy or CT scan, etc, that I have IBS. The reason I feel that it is not IBS, is that the traditional things people do to help IBS do not work for me and only make me worse. So maybe I should go back to my doctor and tell her that. I find that she does not listen to me though.
I was in pain the day after my last colonoscopy and the GI that did the colonoscopy refused to see me. Told me to go and see my medical doctor, but my medical doctor was away so I ended up in the walk in clinic.
Anyways, I have had pain in the left side for the past 1-2 years. Went to emerg and they did a CT scan. The could not see anything.
As of late, I am finding that when I manage to get rid of the pain in my left side then I get it in my right side. So it is very frustrating. The pain in the right side is a brand new thing I have not experienced before.
The most frustrating thing is because I have a diagnosis of IBS, I fit in nowhere. I do not fit in the IBS support groups, because my trigger foods are radically different than their's. I get "inflamed" by any type of fiber pretty well. If I don't get enough fiber I suffer, and if I get too much (and it doesn't take much to be too much), I suffer.
So to my friends and family I am known as the person who hardly eats. I have been called anorexic (which I'm not). I've lost 20 lbs in the past 2 years, not from dieting but because of my inability to eat (or should I say my fear) to eat.
I seem to be making some progress, with eating very small amounts of foods with natural soluble fiber in them, but to prevent them from getting stuck, I must also eat them with another type of food that has laxative qualities, like spinach, to keep everything moving. If the food stops moving (constipation I guess), I will suffer from either spasms in the left or right side, till I get everything out.
Sorry to give the gory details. I really do suffer. I have suffered emotionally with this, I have suffered socially, I have gotten into fights with my bf over what I can and cannot eat, I have developed fear of eating, and the very worst thing of all, because I am stuck with this diagnosis of IBS, and because I do not fit the "mold" of a person with IBS, I have a total lack of support from anyone. I have no one to turn to. I am isolated. I do as best as I can. I am still working, and am very lucky to have a job when I can use the washroom anytime I like, to help with those days I am constantly running to the bathroom, and that is most days. If the food is not stuck, then the food is running thru me. Either way, not fun.
I hope that I wil be accepted on this group. I really need a place to vent and seek support.
Maybe some of you can help me with trying to explain all this to my doctor. Just seems like no matter how much explaining I do, because I am not "bleeding" I am stuck with the diagnosis of IBS, which is really alienating me from getting any support with my problem, and makes me feel isolated.