30 years with indeterminate colitis pig sick!

Ok so am now in a flare since November, bloody,pus covered very soft stools. I had a total hip replacement mid November still recovering, I am interested to see if any others are flaying around with indeterminate as a so called diagnosis?
I was told at 17 it was UC,then at 42 Crohns then told indeterminate!
My Dr says they will not take biopsies due to the blood condition of V Leiden. So yet again am awaiting sigmoidoscopy in three weeks so called urgent appointment lol due to having to interact with haemotology dept.
Just thought I'd have a bloody rant, 30 years of misery is just getting worse and my other hip is being replaced in the Spring, I'm a young 48 female who gave up her motorcycle due to pain etc.

So anyone else with indeterminate would be very interested just to see, thanks for taking time out to read my post rant officially over!

I was diagnosed in March 2015 with "mild UC ?" (literally written with a question mark).

No blood, no mucus (or very little mucus). Max two BMs a day. Brought to remission with 3 months of Prednisone and Asacol. This was in August.

Second flare two months after that (there is a possibility I wasn't really out of a flare, who knows). Again two BM's a day, again no blood, but this time liquid diarrhea, extensive pain in the entire abdomen, weak appetite, dehydrated, ended up in the hospital for 12 days. This time taking Prednisone and Imuran.

Initially my GI thought this turned into Crohn's, but did a quick colonoscopy without prep. Took biopsy. Again "not specified UC", this time extensive.

The strongest pain I had is in the right side of the abdomen the rest is generally left sided.

Well I came off azathiaprine, pred and pentasa last year, this was due to huge weight gain about 30lbs, also I felt I had had too much pred over the years which is probably why my right hip was. Replaces am awaiting my left hip replacement in the spring.
I also take Rivaroxaban blood. Thinners because I have had several dvt's over the years. I also have V Leiden a clotting problem hence the thinners.
My colitis is a balance between blood thinners and trying to avoid pred because it causes problems with my joints. Now I am bleeding heavily am awaiting sigmoidoscopy in three weeks so catch 21, am bleeding heavily can't come off of thinners and can't take pred so hoping they whip the whole lot out soon lol

I'm not sure if I understood correctly.


You were on pentasa, prednisone and azathioprine and now you are off of all medications?

The prednisone was responsible for the weight gain and bone issues. Unless you got off the pentasa and azathioprine for medical reasons like reactions or low neutrophils etc I would get back on them right away.
Uncontrolled inflammation is much worse than the meds (maybe aside for long term prednisone) that are used to treat UC.
If you don't have improvements after staring the pentasa and azathioprine again. Then jump to biologics like remicade.
Good luck.

Poppie said...
I take powdered psyllium seed, 1 tsp a day, and honestly, it works!! it bulks up your stool

Not only does it bulk up your stool, the same as any soluble fiber such as pectin or psyllium husk, but the seed breaks down into butyrate. Butyrate nourishes colon cells. It acts like an internal plaster of Paris to patch up holes and ulcerations within a leaky gut.