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Ulcerative Colitis
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Posted 1/10/2016 4:13 PM (GMT -5)
Hi everyone,

I am a male in my mid-twenties, and was diagnosed with UC almost two years ago. Since then, I have tried so many medications to no avail (5-asa's, steroids, biologics, fecal transplant).

UC has truly taken control of my life. Everyday I am bleeding from my colon with urgent bowel movements. I have no appetite and have lost 30 pounds (and I was already a skinny guy to begin with). I had to quit my job, move back home with my parents, and my long-term relationship with the woman that I loved came to end because trying to balance everything going on was just too stressful.

Since then, I have also developed horrible joint pain (my doctors don't know if it's arthritis or a side-effect from Entyvio, which isn't even working). I could barely exercise and do the things I loved with just the GI symptoms, but now with this terrible knee, hands, and feet pain I am just completely halted.

I am feeling absolutely hopeless. I try to stay positive but this disease just seems like an endless cycle of trying medicines that fail.

Has anyone else gotten to this point of hopelessness and found their way back to a decent quality of life? Thank you.
Posted 1/10/2016 4:24 PM (GMT -5)
Im really sorry that you are going through such a tough time.

Since when have you been experiencing such terrible symptoms?
is it possible you have C. diff on top of flaring?

As far as I know Entyvio does not cause joint pain, however inflammation from IBD does. and the best way to rid yourself of the IBD associated Joint pain is to get the inflammation under control.

Are you ready for surgery? sometimes it seems like it is the last ditch effort but it seem that the majority of people on the fourm who have surgery come back and say they wish they did it sooner.
even if you are not ready to have surgery, interview a surgeon or two, ask them question like how many of the procedures they did as well as their outcomes
make sure you like their personality

also make sure they double check and confirm UC and not Crohn's before surgery as there are different ramifications


if you choose to hold off on surgery than you can try a rescue of cyclosporine although this requires being in the hospital
you can also try a clinical trial
most big university hospitals have them

if you want recommendations for colorectal surgeons post where you live and people can make recommendations
Posted 1/11/2016 4:02 AM (GMT -5)
I was in bad shape approx. a year or two ago. Diagnosed with UC. Lots of intestinal bleeding and weight loss. Lost a lot of weight, was in hospital for 9-10 days, almost operated on. Lost almost everything. Could not find the answer. Started back with Brasco Broth type diet then went to a Paleo type diet. Was on Prednisone and Asacol for awhile. Then started taking Schiff Digestive Advantage Lactose Defense Formula Capsules, Equate Dairy Digestive Supplement (Lactase supplement) and some Schiff Digestive Advantage Intensive Bowel Support on a hunch and I seem to be over it. I eat pretty much what ever I want now with not much problem but still take the lactose/lactase pills and take in mostly lactose free dairy. The lactose free milk taste like regular milk to me.

I've done many other things trying to find the answer to getting better and my best guess is that it was/is the lactose angle that helped me most.
Posted 1/11/2016 8:10 AM (GMT -5)
I was hospitalized this past summer and felt pretty much the same. I figured if a building full of doctors and nurses couldn't stop it, nothing could.

But here I am, 4-5 months later living life with relatively minimal issues. I was going 20+ times a day for 7 weeks.

I visited the #2 ranked gastro dr in my state and he was very reassuring in that there are ALWAYS options with this disease.
Surgery sometimes is the only option left but at least it's always there.

Good luck and hang in there.
Posted 1/11/2016 1:06 PM (GMT -5)
Yes, many of us have been in a similar situation feeling totally hopeless, failed treatment after treatment, and feel we're out of luck/options. I was stuck in a yearlong flare that started with 20+ bms a day, pain, and near incontinence. I was steroid-dependent at 20mgs, had added 6mp upped the dose, and still couldn't reduce prednisone. Luckily, remicade worked and I'm now in remission.

Formulate a plan, in your case I'd schedule a surgery consultation (a question and answer session with no obligation ) and start reading up on j-pouches. Here's a good quote from recent post about it:

atwood said...
This is a very tough decision to make. Definitely take your time to meet with a colorectal surgeon or two (or more), read up on articles regarding the procedure - www.ncbi.nlm.nih.gov/pubmed/14501509, www.ncbi.nlm.nih.gov/pmc/articles/PMC1420906/, www.ncbi.nlm.nih.gov/pmc/articles/PMC2709047/
There are also some good blogs out there that really helped me get a handle on what the process is like - ronnielee-fightingforit.blogspot.com/, itslikethisuc.blogspot.com/ - my own blog fyouuc.blogspot.com/"

Posted 1/14/2016 11:29 AM (GMT -5)
I was in your shoes at one point. I had j pouch surgery and it changed my life. Best thing that ever could have happened to me in regards to treating my UC. I have my life back....no UC, no meds, I can eat real food again, ect. I can't say if your joint pain would go away after surgery. It may or may not. If you have any questions, feel free to ask.
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