Crohn's Disease Forum » General IBD Discussion » Remission but still having trouble


12-20-2010, 06:02 PM   #1
Melliejay
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Remission but still having trouble

Hi,

I am new to this forum but it is so great to know I am not alone! I was diagnosed with Crohns about 7 years ago. I have had trouble with abscesses and fistulas around the anus. I have had 7 surgeries with drainage tubes, etc. After changing specialists I started taking MP6 and after my last colonoscopy I was told the crohns is now in remission. However, I still have fairly regular loose bowel movements and sometimes feel constipated. They last about 2 to 4 days occurring about 2 or 3 times a month. Due to the short time period I would not class this as a flare up. My doctor is at a loss on what could be causing this. Twice I have had stool samples checked to see if I have any bugs or viruses, etc, and they have come up clean. Having diarrhea so often leaves me very tired and lethargic. Is anyone else in remission but still having bowel movement problems? Does anyone have any idea's on what could be causing this? Any support or recommendations would be greatly received:) MJ
12-20-2010, 08:00 PM   #2
Lydia
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If *I* was having bowel problems I would not consider myself in remission. Remission to me is being symptom free. If I have symptoms I consider myself flaring and call it mild, moderate or severe. Maybe you have some minor inflammation the scope did not pick up. Maybe you have some allergies. Some psyllium fiber may address both the constipation and diarrhea you are experiencing because it adds both water and bulk to the stool. Just make sure you take it with fluids. Maybe probiotics would help too. Maybe you have IBS. I know some people that say a chiropractor helped regulate their IBS symptoms.
12-20-2010, 08:23 PM   #3
Nyx
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I'm with Lydia on this one..if you're still having bathroom issues, you're not in full remission. Go get it checked out....
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12-20-2010, 08:45 PM   #4
Jennifer
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Why yes I do! What dose of 6MP are you taking? I recently started back up on 50mg and its helped with the diarrhea A LOT. Having a bowel resection of the ileum can also make you more prone to diarrhea, which I have had.

Contrary to popular belief, remission does not mean symptom free. It means flare free. We're still affected by trigger foods (foods that bring on symptoms) just like everyone else (whether they have IBD or not) and are still affected by stress just like everyone else (IBD or not) and some of us are simply more prone to diarrhea similar to IBS. The way to know if you're fully in remission is if your inflammation markers are normal or close to normal and your scopes are clear. Having a slight amount of inflammation does not mean you're out of remission or in a flare either, it means you have IBD (remember, it never goes away) and even slight inflammation can cause diarrhea but should clear up. If it doesn't then you should have a med check done along with blood work and possibly a scheduled scope (at least a call to your GI to see what they have to say).

Good luck!
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
12-21-2010, 07:59 PM   #5
Melliejay
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Thanks for the responses. I went on 6MP about 15 months ago. I had a reaction to the drug with hayfever like symptoms, tiredness and nausea on top of the standard bouts of diarrhea. I stopped taking it, gave my body a break for about 3 weeks then restarted slowly increasing the dose over a two month period to get to 50mgs with minimal side effects. After twelve months I was feeling increasingly terrible. The only way to describe it was like a zombie with little sleep and a slight car sickness feel about 80% of the time. During this time I had breath tests and found I have a Fructose Intolerance. I changed my diet to accommodate this but it didn't make much difference. I had another colonoscopy and the Specialist advised that everything looked very very good. The 6MP had basically done it's job and there was no obvious sign of crohns. At that point I decided it was the 6MP making me feel terrible and my Specialist and I agreed I could 1/2 the dose. Within days I felt better (almost like someone had wiped a layer of Vaseline off my eyes and taken cotton wool out of my brain). I didn't realise how terrible I had been feeling until I reduced the dose. My main problem now is general tiredness and what I would call non-standard bowel movements. My doctor tends to think if it doesn't last more than a week it isn't Crohns related. I find that I cannot tolerate much fibre at all in my diet and nuts tend to trigger aggravation around the scar tissue from the fistula's. I have not had any surgery internally except the fistula's. Are there any common foods that anyone has found tends to cause these minor flares?
12-22-2010, 02:13 AM   #6
Jennifer
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Nuts, raw fruits and veggies, the skins on fruits and veggies, corn, carrots etc. Those are pretty common trigger foods but there are others like lactose, caffeine, gluten etc. They don't cause flares or minor flares even, they cause symptoms like constipation, diarrhea or gas (symptoms that any normal person without IBD would have if they ate those things). Some foods are just harder to digest in general and it takes time to learn what foods trigger your symptoms.

Now you mentioned that you have scar tissue. Scar tissue doesn't absorb nutrients so the food you eat is just passing through those areas. So I think its quite possible that you're more prone to having diarrhea because of the scar tissue. I'm no doctor though.
12-23-2010, 02:21 PM   #7
Astra
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I totally agree with Crabby, and I'm no doctor neither but remission is no inflammation. My gastro team swear by this.
I'm in remission, I have no pain but I still have diarrhea maybe 3 times a day. This isn't a flare, this is normal for me, it just means I've eaten something that hasn't agreed with me, mainly veg or red meat, or fruit.
We've discussed many times on here what remission is, and many have agreed that food doesn't cause a flare, but can cause symptoms such as diarrhea.
xxx
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10-16-2011, 09:52 PM   #8
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It is possible you have terminal ileal disease. Even if in remmision, the damage caused by earlier flares can render this part of the gut poor at absorbing biles salts which, along with absorbing fat soluble vitamins, is its major function. If the salts are not absorbed, they enter the large intestine. They are highly irritating to the large intestine which then procedes to propel the salts and all other material more quickly through the large intestine. This does not give the large intestine enough time to reabsorb the water in the material. This leads to loose motions and the big D.

If this is the case, it can be treated by the use of a powder that binds the bile salts. It is very effective.

Your doctor may require some imaging of your ileal region, to confirm find signs of the damage, before starting you on the drug.

As an aside, the failure to reabsorb bile salts increases your risk of gallstones, as the reabsorbed salts are used to break down the material that forms stones. If in the future, you suffer pain in the stomach [top centre of the abdomen, that radiates to the back/shoulder it may be due to stone formation].

Kindest thoughts

Seán

PS. While from what you say it seems highly unlikely - as a rule - if you are suffering from alternating bowel habits [particularlly if their is blood/mucus in the stool], and loss of weight - gut cancer must be ruled out.

Last edited by SMSIRL; 10-16-2011 at 09:58 PM. Reason: Adding usual caution on alternating bowel habits
10-16-2011, 10:02 PM   #9
David
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Hi Sean,

Welcome to the forum
As an aside, the failure to reabsorb bile salts increases your risk of gallstones, as the reabsorbed salts are used to break down the material that forms stones. If in the future, you suffer pain in the stomach [top centre of the abdomen, that radiates to the back/shoulder it may be due to stone formation].
Fascinating! Do you by chance have a source for this where I can read up on it? I'd love to learn more
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10-17-2011, 10:16 PM   #10
SMSIRL
 
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Hi David
Student texts such as Avunduk's Manual of Gastroenterology will touch upon this.

The issue is a little more complex as, while this mechanism is the conventional explaination of an increase in cholesterol stones, the chances of all types of stones increases with terminal illeal disease. [cf. GI/Liver Secrets, Questions you will be asked... by Peter R.McNally]. Furthermore, some groups such as Hutchinson et al [cf. Gut. 1994 Jan] have challenged the conventional theory, and Lapidus et al in Am J Gastroenterol. 1999 May;94(5):1261-6. challenges the expectation of what sorts of stone would be formed.

Given the individual who asked the question on the thread, the conventional wisdom, and the benefits of early resolution of stones, it seemed appropriate to bring to their attention the conventional wisdom. However as you will see, for those interested in detail, the issue is more complex.

If I have time over the next few days, I'll go through the "lit" to find the current state of play.

These caveats, however, do not apply to the issue of bile salt malabsorbtion leading to colonic irritation and D, which is a well attested syndrome with a clear and effective treatment - colestyramine resin.

Kindest regards

Seán

Last edited by SMSIRL; 10-17-2011 at 11:09 PM.
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