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Active & painful Crohns with unimpressive scopes... why?

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Crohn's Disease
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Posted 11/19/2011 5:39 AM (GMT 0)
I have had Crohns for 17 yrs now and 99% of the time after a meal i get very painful diarrhea.  The confusing part is when i get scoped the amount of diseased areas in my ileum (one of two major diseased areas for me) isn't that impressive.  My rectum and the last couple inches of my large intestine are moderately diseased but according to my GI this shouldn't create overwhelming BMs.  This is super frustrating because i am tried every drug, biological and nonbiological and they can not control it.  Even messed with my diet many times, gone gluten free,taken probiotics,etcs.  I swear when i talk to my gastro he doesn't always believe me.  I am in tremendous pain a lot and i unfortunately i have to take narcotics to keep my pain under wraps.

Is anyone experiencing the same issues?  My GI and i are both frustrated.  He did mention that the disease might be in the lining and therefore unseen.  I have had two resections with little to no impact.

Posted 11/19/2011 6:07 AM (GMT 0)
They tried to tell me this also before mine did get real bad. Each person is different. I was having horrible pain and terrible urgency but the scopes didn't say much. Part of it was actually my gall bladder and then my pancreas. Trust yourself. You might do more work with your diet???
Posted 11/19/2011 6:31 AM (GMT 0)
Have you tried Questran? Since you've had a few resections, maybe your having too much bile in your system. I take it for no gallbladder, and it really helped me with the D after eating. Maybe mention trying it to your doctor.
Posted 11/19/2011 7:40 AM (GMT 0)
Having Crohn's doesn't protect you against IBS too. Is there something you have in almost all your meal ?
Posted 11/19/2011 2:21 PM (GMT 0)
If you have inflammation in the rectum and sigmoid colon, perhaps using rectal meds will help address that part and relieve some of your discomfort.

I have always felt that rectal inflammation is not going to cause diarrhea, but that's just my opinion and I'm certainly no expert. So I'd be looking higher for the cause of the loose stools, like at bile as mentioned above.

You wrote that you tried a gluten free diet - can you say if you gave it a good 3 week shot before giving it up?
Posted 11/19/2011 3:51 PM (GMT 0)
My daily symptoms can be truly terrible, with days full of joint and muscle pain, mornings full of explosive D, and afternoons and evenings full of cramping. But twice now, when my symptoms are at their worst, an SBTF has shown no narrowing at all in my intestines, and scopes have shown no CD in the rectum. I'm on 6MP and technically in remission, but it hasn't diminished my symptoms at all. My doctors now believe that I have 'short gut syndrome' (after removal of 13" of terminal ileum in 1999) and IBS. Questran (cholestyramine) helps a little, but sometimes has its own uncomfortable side effects, so I take it sporadically. Like you, the only real relief I get is from an occasional hydrocodone tablet (one every couple of weeks). Eventually I'm going to have to ask my new doctor for more hydrocodone, and I don't know how he'll react to my request. I'm scared.
Posted 11/19/2011 3:57 PM (GMT 0)
With the scopes they only reach so far. Maybe you should ask about a pill cam to be done. This is a pill camera you swallow and it takes pics all thru your small bowel where the scopes can't reach. Keep fighting my friend, and I hope you find some answers. Hugs!
Posted 11/19/2011 4:27 PM (GMT 0)
I went through he same thing a few years ago. They finally Dx'ed me with IBS on top of Crohn's (oh great). Now, after a few yrs of remission and only minor symptoms such as morning D, I have pain, D (mostly in the day/evening), bloating (smth Ive never had before) and I'm tired. Yet, my tests are coming back fine, although I have yet to have a scope. I'm sure it'll come back ok like the last time. But man, it doesnt feel like IBS at all. It sucks! I'm thinking I might have bacterial overgrowth ?
Hang in there, you're not alone, and I say, trust your symptoms! Maybe it's not CD, but it might me smth else.
Posted 11/20/2011 6:33 AM (GMT 0)
I don't believe in IBS with Crohn's. If the intestines are inflammed, of course they are irritable. To me, it's a simple matter of logic. I believe that IBS is a diagnosis GIs throw at us when they just can't figure out why we are having symptoms.

I am in the same boat as you, only my scope showed NO INFLAMMATION. I am having terrible cramping after I eat and periodic episodes of diarrhea. My GI says I had Crohn's sometime recently, as I have new scarring in my colon, but since he didn't find inflammation now, I do not have Crohn's. UUUGGGHHH!!! He says he just can't see any reason that I should be having the syptoms that I have.

I have narcotics to help with the pain from my joints and my gut and I also have a script for Pamine Forte (Methscopalamine) which is an anti-spasmotic. I really don't know how I'd get by without the 2 of them.

I just read your current meds. Why are you taking Reglan? It's purpose is to help with slow bowel and it speeds food through the GI tract. Could that be what's causing all the D? It's certainly a possibility. I first tried that to help with heartburn. We figured it would help move the food out of my stomach, but it caused horrible D and so I only used it when I had constipation.

I hope you find some relief soon.

Posted 11/20/2011 7:26 AM (GMT 0)

Keah said...
I don't believe in IBS with Crohn's. If the intestines are inflammed, of course they are irritable. To me, it's a simple matter of logic. I believe that IBS is a diagnosis GIs throw at us when they just can't figure out why we are having symptoms.

I agree! IBS is only diagnosed when there is never any disease found. In our case they have found disease at one point. Scopes can't see all of our intestinal tract, they can't say for sure that there is no active Crohn's SOMEWHERE from the mouth to the anus. That's why I hate that they can be so scope happy with this disease. It's an important tool, but they take it to be the end all when it comes to saying what's going on. When it isn't always the case.

I cringe when people say IBS, maybe it's because I was told that for almost 10 years. When I actually had Crohn's. I wasn't getting the proper treatment for that long, and almost bled to death because of it. My doctor wants my to have a scope a soon. Sure after I've been on prednisone, so that it won't show anything.
Posted 12/8/2011 4:41 AM (GMT 0)
I have had the very same results w scopes coming up unimpressive...w just slight redness in the sigmoid. I've also been in full flare, w bleeding and pain and had my c-reactive protein come back negative! I was first diagnosed w CD in 1998 and have been on Remicade infusions for over 10 yrs. My last scope was very clean and my GI doctor said ,"Are we sure you have Crohns?" I came home last nite, after my appt w him and cried for hours... Have I taken all these dangerous drugs for nothing?! does my dr NOT believe me? Of course... I have had a total of 7 different GI docs since my diagnosis. I changed a couple of times because I lacked confidence in the drs, but mostly because I moved to 3 different areas of the country. I'm seriously considering holding off on my next Remicade infusion to INDUCE symptoms .. I feel a bit sad about that. I've done very well on my infusions...and I believe they keep my colon "healed" looking and acting...tho I know of course, there is no cure for Crohns. I hope you'll write again on this subject. Kind of feel alone in this sometimes, don't we?
Posted 12/8/2011 7:55 PM (GMT 0)
I have had several colonoscopies, CTs and MRIs which showed nothing. All tests without an exception were negative. At the beginning, my GI never believed it to be IBD and thought it was IBS as I'm anxious by nature. However, there were flare ups where I had very high fever, D, vomiting and dehydration and he decided to send me to hospital. It was then that he told me that he suspected that I have both IBS and IBD. He even told me that he knew that I was in pain and wanted to relieve it. It was in 2010 when I had a severe flare up and D that could not be put under control. So, he decided in a trial to put me on 40 mg pred and things went on well. Again, he reconsidered my case but kept telling me that he won't give me any biologics unless there are ulcers. A couple of months later, I had my first proctitis flare up and 6 months later, a scope showed chronic proctitis and enteritis. I'm now on every possible med you can imagine: pred (tapering), entocort, pentasa tablets, MTX injections, Pentasa enema (suspended now). The last thing my doc is experimenting with and I suggest you ask your doc about is Rifaximin (Xifaxan). It's an antibiotic intended only for the bacteria in the intestines and does not affect the rest of the body. In the leaflet is the mentioned that it's prescribed for IBS but when I searched the net, I found that it is used for Crohn's disease and it can induce remission. I have been taking it for 5 days now and will get back to my doc after 2 weeks to report how D and my symptoms went on. Of course, if I become better, it could be either MTX or enocort kicked in but I'll give it a try. I won't lose anything.
Hope you feel better soon:)
Take care!
Posted 12/9/2011 12:43 AM (GMT 0)

Keah said...
I don't believe in IBS with Crohn's. If the intestines are inflammed, of course they are irritable. To me, it's a simple matter of logic. I believe that IBS is a diagnosis GIs throw at us when they just can't figure out why we are having symptoms.

I also don't agree with an IBS diagnosis. After 8 years of first being told I have D from anxiety and then IBS. I finally went to a 3rd GI doc who found Crohn's. (This is after I had a scope from my first GI doc that showed "nothing"). I had to fight for most of last year and half of this year that the blood I was finding was NOT from having IBS. I didn't take any of my lomotil for 1 1/2 months before my last scope just to make sure it would be as inflamed as possible. It is sad we have to go to such lengths just to get them to pay attention. My point is that I think in most cases "IBS" is just IBD that they haven't found yet.
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