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Should I change doctor or treatments?

Diagnosed with Crohn's 6 years ago.(or possibly UC, it is undetermined as what I have for sure,but dr is thinking Crohn's). Taking Remicade every 6 wks(highest dose possible), prednisone 7.5 mg,Imuran 250 mg, Cymbalta 60 mg, & Bentyl prn for cramping. My dr says I am stable with my Crohn's, but I suffer with daily abdominal pain & cramping, muscle & joint pain, severe fatique. Did I mention that I also have Rosaea & gluten intolerence? How can I feel so sick everyday when my gastro dr says I am stable? My rheumatologist does not know what other treatment to offer other than prednisone or switching to Humira. I have antibodies which may mean I am having lupus like syndrome. Gastro dr keeps telling me I am stable. Think I might have a stricture because I have some constipation, severe abdominal pain after a BM, & then SEVERE fatique with it, but he has never even mentioned that as a reason for my pain.Should I change dr or try different treatment? I am FRUSTRATED.
 

nogutsnoglory

Moderator
It certainly wouldn't hurt to have a second opinion. When was your last scope or imaging done? It's hard to believe any doctor would say you are stable if you indeed have a stricture.
 
I think you shod get a second opinion.

It never hurts,and you know your body..... best!


Lauren

I forgot the whole sentence
Should never post while on benedryl!
 
Last edited:

Jennifer

Adminstrator
Staff member
Location
SLO
Hi Frustrated and welcome to the forum! :D

What tests have you had done recently? Have you had your vitamin levels tested recently? Being low or deficient in things like B12, Iron etc can bring on symptoms like fatigue along with a long list of other unpleasant symptoms. Here's info on vitamin deficiencies and how they affect you: http://www.crohnsforum.com/wiki/Vitamin-and-Mineral-Deficiencies

I have osteoarthritis and see a Rheumy as well. They started me off on Humira (they let me choose between Humira and Remicade) and it completely got rid of my joint pain along with any minor GI issues I was dealing with (diarrhea and mucus in stool) within 2 weeks. Unfortunately I kept getting upper respiratory infections after each injection which can happen to some people. Many people on the forum are doing rather well on Humira though. We have a Humira subforum here if you'd like to check it out: http://www.crohnsforum.com/forumdisplay.php?f=59

Right now I'm on Remicade and its not doing all the wonderful things that Humira did. I've been on and off different meds for Crohn's for the past 22 years and in all honesty for me Remicade seems like its not doing anything. I only started in January so I'm giving it more time but if you've been on Remicade for a while (many months-over a year), you would know if it was working for you. How long have you been taking Remicade at that dose?

I have to ask, why are you on Prednisone if things are "stable?" Is your GI using it as a long term thing or are you still tapering off it?

I'm assuming you've gone gluten free due to the Celiac. If not that's the first thing I would do to see if it helps with any of the pain.

If your GI isn't willing to do more testing to find the cause of your pain then yes I'd want a new GI. Keep us posted on how you're doing. :)
 
Last scope was 2010. Normal after starting Remicade. Having EGD with Smart Pill camera test to be scheduled soon. Cannot have MRI due to back surgery & hardware in my back. Dr did not mention possibility of stricture, but I feel we are overlooking something due to my symptoms, & feel like dr does not really listen to me.
 
I have been gluten free for 2 yrs. Not been diagnosed as Celiac by GI dr. did it onmy own as last resort. Recently had vit b12, & vit d levels checked' Rheumatology put me on prednisone for my muscle & joint pains, but they think I have Lupus like syndrome due to the Remicade. My fatigue is so bad I have stopped working for the past month trying to get some energy back. I have so many issues with this disease I don't know how to sort it all out. & the drs are just as frustrated.
 
I'm so sorry you're going through this, Frustrated. I had the same problem and ended up switching doctors. It made a world of difference. I started on Humira and a lot of my fatigue and pain from Remicade went away.

I have, however, had to come to terms with the fact that I won't always feel well. I have continued abdominal pain and flares (although they aren't as severe or last as long). My doctor doesn't believe I'm flaring when I do flare and he tries to say it's IBS. Unfortunately, my IBD doesn't send up all of the red flags that normal blood work does. I just become anemic and they blame it on poor iron absorption. I've had a few surgeries, and the last time they said I was in remission and developed a stricture from a previous surgery, but when they went in, they removed 3 feet of bowel riddled with active Crohn's disease. You would think this (along with my swollen, red joints) would be enough to convince them that my disease is active when I say it's active, but it's not. So what I do is try to rest when I feel my disease flare and I'm very good about avoiding triggers. I rely on myself more than doctors, now. I just maintain my appointments to make sure I get the medications I need.

I do think a pill camera is a good idea if they haven't visualized all of your bowel. My colonoscopies were always clean and then the pill camera test would show active disease throughout my jejunum. I hope it finally gives you the answers you need!
 
My GI dr left me a messge today that I could not have the pill cam test. Took too lonHg for the test pill to go thru my bowel. I might have a stricture. Will find out tomarrow what test they want me to do to see what is going on. Has anyone had a stricture? & what did they do for it?
 
That happened to me, too. The patency capsule dissolved at the beginning of my terminal ileum. My surgeon made me swallow the real thing to mark the stricture before surgery. The only thing that can help a stricture is surgery but once you start down that road, you end up with other problems including developing a stricture at the surgery site down the road and adhesions in your abdomen. Here's a link to the forum to discuss surgery if you want to read through posts to learn more about it: http://www.crohnsforum.com/forumdisplay.php?f=71
 
Thanks so much. Had EGD today with biopsy to check for Celiac. Also a CT Enterography. Hope that will give us more answers. They found erosions all over inside my stomach & they took biopsys o that.Anyone have erosions inside their stomach due to their didease or from meds?
 
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