Clear colonoscopies, but terrible symptoms

After nearly four years of nonstop flaring, I'm posting out of desperation.

I've tried all of the 5-ASAs (currently taking Lialda, Canasa, hydrocortisone suppositories, and Uceris). I've had some positive response to antibiotics (Cipro and Flagyl) and prednisone, but nothing else and not consistently, and I've never achieved remission. I follow the FODMAP diet, and often have to resort to a liquid diet during the week because my symptoms become too severe for me to work otherwise.
According to my doctor, my colonoscopies look pretty good - only light irritation, no ulcers. I've also been tested for every parasite and infection at least 4 times. Despite the good test results, my symptoms are completely unmanageable. I now measure trips to the bathroom in hours rather than by numbers because I'm there so frequently, always with blood and mucus. I'm constantly B12 deficient and anemic and my weight fluctuates pretty wildly within a 30 lb range, largely thanks to spending 10 of the last 12 months on some dosage of prednisone. I also experience a lot of nausea and vomiting, and just completed a gastric emptying study that indicated that I have rapid gastric emptying, also known as dumping syndrome.
I've asked to try Imuran, but my doctor is hesitant because of my test results and because I have a genetic predisposition to cancer.
I'm now on my fourth gastroenterologist because all of them seem to glance at my test results and tell me that I'm doing fine, despite the fact that the constant diarrhea, vomiting, and urgency have basically turned me into a shut in. I've been on the Lialda and Uceris for four weeks now (having switched from Colazol and prednisone), and if anything, I'm worse. My parents are talking about making the trip to the Mayo Clinic to try to get some answers.

Has anyone had a similar experience (clear colonocopy with bad symptoms)? If so, did you ever find a treatment that worked?
Also, how long should it take to see some benefit from the Lialda and/or Uceris? I've heard everything from a few days to eight weeks.

That is awful. I've never heard of anyone flaring that badly without significant inflammation. Good for you for not staying with GI docs who weren't helping you. Are you in a big city with a teaching hospital? That's where you need to be. Otherwise, go to Mayo or Cleveland Clinic

Could you be intolerant of mesalamines? The main symptom of intolerance is exacerbated colitis symptoms. That's what happened to me when I tried all of them.

I'm sure you've already been tested but...c diff sounds like a possibility. Is that one of the things you've been tested for at least four times? What about more unusual things like parasites? Have you traveled to South America or Africa or another place where you might've gotten something? Do you drink well water? Could be trichinosis? I'm not a doctor, of course, but I'm throwing ideas out there. Maybe your doctors need to think more outside the box? The symptoms you're having are like colitis but that doesn't mean colitis is the cause.

On your question about the Uceris. If you've been taking it regularly for four weeks in and you've seen zero improvement, I would say it's not working for you. It's a topical treatment (unlike Remicade, etc.) and I can't imagine that it would take more than four weeks to have any effect.

I'm really sorry you're going through this. Colitis is bad enough but it's even worse when no one is able to help you.

Same thing with me sorta, I'm on Humira and my CD went into remission, I'm now being bogged down by IBS mainly C...

FODMAP diet isn't meant to be on indefinitely, it's meant to use as a guide to see what trigger foods are bothering IBS symptoms. I'm staring mine on April 6 for 4-6 weeks then I'm to do a reintroduction of foods/beverages I normally eat/drink to see which of them are the culprit(s) for my system.

I'm going to do the low FODMAO fructose free...there are variations of the FODMAP diet.

Sucks that GI docs only care about what they can see on a scope or biopsy and I have experienced the same treatment, as in my life was impossible due to symptoms and doctors didn't care. I broke down crying once in an office visit and the GI (female) could not leave the room fast enough. I found another doctor, on my 5th GI in 14 years.

My thoughts: you could be mesalamine intolerant as said previously, which could be magnifying your symptoms.

Try sfRowasa enema instead of Canasa. It has mesalamine but is sulfite-free, also a possible agitator.
Try Balsalazide if you haven't already.
Eliminate all grains and nuts and anything fibrous for 30 days to see if your bleeding gets better.
Eliminate caffeine and other stimulants.
Take a Benadryl at night.

None of the Rx meds ever helped my symptoms but I'm still taking Balsalazide because it doesn't make things worse. Diet modification, after many tries at different kinds, finally started working for me.
Start thinking about IBS as a factor (as also mentioned earlier) and see where that leads you, ask your doctor about meds for that.

Mayo might help but IBD/IBS is so complicated that you will be the best detective rather than a GI fixing it.

Post Edited (imagardener2) : 4/1/2015 4:13:44 PM (GMT-6)

I am sorry for your pain, and glad you are going where they can review your condition. Where is home for you? My daughters pathology was never as severe as her symptoms, mainly because the rectum was a mess and that area causes the urgency. Get all your labs and prior work ups to bring with you, along with a food and BM frequency diary. Have they done an endoscopy? Have you looked into biologics, like Remicade? It was like liquid gold for a long time for my girl. Keep us posted.Good advice was given in this thread.

Have they looked at your pancrease? If your pancrease doesn't produce enough of certain enzymes that can cause diarrhea.

How does your blood work look? Any inflammation or high liver tests?

I'd start at the colon and work my way back up the digestive tract looking for the cause.

If you do go to a major teaching hospital they might be able to tell you about further treatment options since you are at higher risk for cancer.

I used to take it right before bed, then for me anyways, I noticed it was best to take it with a meal. But for a long time I had no issues taking it at bedtime. As far as being worse in the morning, that is kind of par for UC, mornings are typically the worse. I believe that is because while you sleep your organs also sleep and/or slow way down, then all of a sudden you wake them up and that makes your intestines very cranky! A lot of suffers are worse in the morning then improve as the day goes on, I have always been that way while flaring.

And just so you don't feel alone, the doctors originally treated me for an infection with a very powerful antibotic that ended up landing me in the ER for a 6 night stay after taking them for 4 days - emergency colonoscopy - and then I finally got my UC diagnosis.

The FODMAP diet isn't meant to be followed indefinitely from my understanding, it's to help figure out IBS triggers as my dietitian explained it to me, after 4-6 weeks of following the diet then we will do re-introductions of things that I normally eat to see which of those (that I normally eat) are causing all my IBS issues. My dietitian also explained that she will basically modify my diet to aid with my IBS as well as my crohn's for when I flare again (an anti-inflammatory diet that will also aid with my IBS long term) she's not guaranteeing that I won't ever flare again but explained that at least my new diet changes would hopefully and more than likely make the flares more bearable...especially if we can keep my IBS at bay.

To pb4: While on FODMAP, it was difficult to identify triggers. I've tried SCD too with few results. The size of the meal seems to matter more than what it consists of, so no large meals, which is tricky. If I eat during the work week, I only have a 3 hour window. I can't eat during work hours, and if I eat too late, I'm up and down all night. Add that formula to 10 months on prednisone, and small meals are really difficult.
I also have serious problems when I'm well hydrated. Drinking a glass of water will immediately send me running for the bathroom. Having just received the rapid gastric emptying diagnosis, that makes more sense now.

Currently, I stick to Ensure Clear through the week and drink plenty of water at night after work, then load up on protein during the weekend, when I can pretty much be at home 24/7. Having experimented with small quantities of gluten, lactose, fructans, etc...nothing is really a trigger. I just try to stick to smaller quantities of healthy foods and stay as hydrated as I can. I usually end up eating FODMAP legal foods just because plain chicken seems more appetizing than pasta.

L rachel, who do you see at upmc? Platinumpixie and me both go there as well. I see dr. Binion.

Lialda made me feel terrible. I found out i had a mesalamine intolerance. I couldnt hold a canasa for more than ten minutes without running to the can.

Are you getting enough fiber via the diet you eat? Increasing your fiber could very well be just what you need, maybe like myself, you have some IBS issue getting in the way of feeling good, especially if you're colonoscopy looked pretty good, mine showed I still had some rectal scarring but my CD inflammation had finally all cleared up for the first time ever in 23 years of being sick...only to end up developing IBS at some point while being sick with crohn's colitis.

Fiber aids with both D and C and if increasing it food wise doesn't help then maybe taking a supplement like metamucil (as I am currently) will help you.

Hmmm, and you're still having D? If so maybe increase it a bit and see if that helps? How much are you taking? Does it contain psyllium in that brand you use?

I still have frequency and urgency with my IBS-C, I didn't even think that was possible :( but I have found the metamucil caps to help some, should be interesting to see how things go while dietitian has me on this diet for 4-6 weeks...she had mentioned that with the diet plan she'd be giving me that I wouldn't likely even need to take the supplement form of fiber anymore so long as I am able to stick with the diet plan she'll be drawing up for me when she has figured out what my IBS triggers are (and it's suppose to also be a crohn's diet to ensure I'm eating particular anti-inflammatory foods) would be nice if it works as easy as she makes it sound.