Kathy1946

I was diagnosed with UC about 11 years ago when I went to the ER. I never saw a Gastroenterologist. All they said was yes you have UC and sent me home. The flare lasted for months. The only information I get is online I have an appointment with a doctor at the end of February but in the meantime I’m winging it. I’m going with Dr. Google. Losing weight I can’t afford to lose. My question is in between bouts I cannot go…cannot have a BM any suggestions are welcome I am so glad I found this site!

Thank you!

I have had colonoscopies since and they said I had diverticulitis but there was no sign of UC when they did the procedures, but I doubt they were looking for it since it was never on my records…..that I know of. At the beginning of this flare it was waking me up at one, two and three in the morning and I had liquid explosions finally ending in a lot of blood. That went on for about five days. During the days after about 10AM I seemed to be fine. 11 years ago it lasted for months and I just kept eliminating different foods. It finally stopped but never did see a G.I. doctor about it. I hope you’re right. I just saw my primary care doctor and talked to her about it and she said she would try to speed up my appointment with the gastroenterologist, but so far no luck. I have cut out all sugar, fats and alcohol and I’m down to not a whole lot. In between the explosions I’m constipated but not to the point where I am uncomfortable…..yet.
Thank you so much for your input.

The constipation is likely due to the colon & rectum being inflamed and swollen.

Did you ask your doc about stool tests? You don't have to wait for a GI to order them -- your primary care physician can do that and then when you have your GI appt he will already have that info. If you don't do them now your GI will do them later and treatment will be further delayed until the stool test results are back. Ask for a test for c-diff and while you're at it ask for a faecal calprotectin test. C-diff is a highly contagious pathogen whose symptoms can be similar to a UC flare and the faecal calprotectin test can measure inflammation.

Your PCP can also order some blood tests in advance too that the GI would likely ask for -- CBC, sed rate, and CRP.

Just ask the PCP to copy the gastro doc with results so when you finally see him he can maybe start treatment right away. If you have c-diff the PCP can and should start treatment now.

With UC we as patients have to be our own advocates and sometimes ask docs for tests and treatments -- if you just wait for docs to suggest things you could be in for a lot of suffering. Docs have hundreds of patients that they see every week. You have only one (yourself). Think of your docs as partners for your health. They will usually work with you and appreciate questions and requests.

Have you had biopsies during any of your colonoscopies?
I suggest you request them at the next one.
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If your GP has put forth request to test for suspicion of UC...re your past, but unmedicated, diagnosis...biopsies will/should be done. But discuss with the GI that you need to know what's going on, because it seems that it couldn't only be diverticulosis/diverticulitis.
You seem to have slipped trough some very wide cracks re diagnosis and treatment.

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Kathy...i also suggest you get copies of all results. You might even be able to get a copy of past results.
Absolutely, you need to be your own advocate, but be prepared with knowledge and a list of questions to stay on point.
If you can get an appointment for discussion with the GI...that would be helpful.

Keep us updated...
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Have you heard anything about getting the stool tests?

Docs should do the biopsies when you get scoped without you asking, but if you ask and they don't do it you really should find a new doc. Biopsies are a normal, essential part of colonoscopies when you have IBD to check for changes in the structure of the colon.

Well, I just got the results of stool sample test. Not C diff. My doctor said that my symptoms are a result of UC, and the only reason she thinks I have UC is because I told her I did. I told her I did because the hospital 11 years ago said I did because I told them I thought that’s what I had. Oh my! I see a G.I. on the 27th

Thank you so much! I’m just hoping this GI doctor will be able to listen and answer ALL my questions and take the time to let me tell her the history of all this. I’ve never been to a GI before.