Microcytic Colitis (Collagenial Colitis)

[mwise]

Back in 2007, I was diagnosed with Microcytic Colitis and treated with Endocort EC and Creon which I weaned off the medications in 2009. I went from daily bouts all day of diarrhea to constipation. Well, after eating something 2 weeks ago that didn't agree with me-possible food poisoning, I have been having daily bouts of diarrhea once again. I called my GI doctor at Cleveland Clinic and he thinks the food poisoning may have tripped my colitis again. He ordered stool cultures-sorry if I am grossing anyone out and I am waiting on the results to rule out parasites, bacterial or viral infections. I also am scheduled to see him March 26th. Has anyone had this problem? Any suggestions for stopping the diarhea? I tried Pepto-bismal, Immodium and Lomitil to no avail. I am trying to stay hydrated, but did lose a few pounds which I can't afford to lose. I am willing to try any homeopathic treatments to stop this. I am miserable and housebound right now.

[Clairefmartin]

I don't have any experience or suggestions with this - but it sounds miserable and I hope you find some relief.

[songcanary]

Marlene,

I am wracking my brain trying to think of something, I normally am constipated so have more experience there lol. So Lomotil isn't working? Calcium constipates me, could you take some of that? Iron does too, maybe some of that temporarily. I wish I had better answers, I'll keep thinking. I'm so sorry you are dealing with this.

[issie]

I had ulcertavie colitis and what finally got me over it was Symbiotics Colostrum and Probiotics. If you think you're having auto-immune issues, there is a Colosturm by that company that is for the Immune System and that is the one I used. It took awhile, but I finally got better. With me, mine was so bad - they actually had me do two rounds of an oral chemo. They had to kill all my bacteria - both good and bad and then I had to start over with my gut flora. I hope yours doesn't get that bad. I was one sick puppy. I'm glad that's a thing of my past. I so hope you get better - I remember the pain of it. I had to crawl on the floor to get to the bathroom and just lie in there. The doctor said it was the worst case he'd ever seen is his 20 something years of being a doctor and said I should have been dead. So, I feel very fortunate. HANG IN THERE!! So, very sorry it came back on you.

Issie

[Lemons2lemonade]

i have no experience with this. However, i was getting bad diarrhea after an antibiotic and i found that a probiotic helped me. The bacteria in your abdomen are responsible for digesting lots of your food I also was passing whole chunks of food. So i suspected these bacteria weren't doing their job.

[mwise]

Thanks all of you for the support and ideas. I am taking a Probiotic, but I am going to try Calcium and Symbiotic Colostrum. I am willing to try anything. I am miserable. I know how you felt Issie because that is how I feel now. I actually slept in the bathroom Saturday & Sunday night because I was exhausted literally running/crawling at times back and forth from the couch to the bathroom so much. I am hoping today I get the results back from the stool specimen/culture sent so I can get some type of medication/treatment to fix this. I will keep you all posted .

[jackiemxoxo]

I agree with what the others mentions and would also suggest specifically the probiotic Florastor. It is usually more pricey (you can also find a coupon online if you do a search) but it works better than the others and my GI doctor said it helps fight infections better. I used it with reoccurent C.diff infections and noticed it did work better than the others. Also, you might want to find out if any specific foods make it worse. I hope you feel better soon!

[issie]

mwise,

If you're going more than every 10 minutes, you may need to get back to the doctor. I was at every 5 minutes and there wasn't anything left - but, he said I should have been dead with having had it as bad as I did within 2 days. But, when I finally got in it was my 5th day of being so bad. Did they do a colonoscopy on you? They did on me - why, I don't know because I was so bad and ulcerated. But, I finally got help then. What was so bad is I also had a ruptured appendix at the same time and I didn't get surgery (until 2 years later) because we didn't have insurance - plus, (Could it be any worse - yes) I got pneumonia at the same time. Somehow, I survived all of it and am surving this POTS thing too.

Just be aware it can go bad really fast and if you need to get help - don't hesitate to go back.

Issie

[Katybug]

Marlene,

Another natural treatment used for people and animals is papaya puree (just whiz some papaya and little water in the food processor or blender.) It helps coat the GI tract and has soothing enzymes. I have also used the Florastor probiotics and could tell a positive difference from other brands.

I can relate to spending nights on the bathroom floor for the same reason and I wish I could do more than tell you that you have moral support out here. It's just miserable. I hope the tests give a definitive answer so they can start you on treatment.

Hang in there,

Katie

[mwise]

Well, I didn't get the results back on the stool cultures, maybe tomorrow. You are right Issie, I need this fixed as when I start going it is about every 10 to 15 minutes for hours until I am finally exhausted. I did do food elmination diets in the past to find triggers. I was tested for Celiac which came back negative, but I still try to be semi-gluten free. I am going to call back the GI doctor at Cleveland Clinic to see if he can get me started on something. I am going to try the Florastor Probiotics. I take the Advantage Brand, but if that one works better, I am going to take it. I like the papaya puree as I use my blender alot to make smoothies. I did have a colonscopy December 2010 during the time I was diagnosed with OH dysautonomia. It showd Diverticulitis and Microcytic Colitis, which at the time, I was actually constipated. I was so symptomatic with the dysautonomia and had severe constipation at the same time. The GI doctors got my bowels working with Miralax and than I switched to good old prunes that kept my bowels moving daily for the past year until the food poisoning 2 weeks ago. That is when this all started and hasn't stopped. I am managing to stay hydrated so far especially with protein smoothies. I am determined to beat this.

[ramakentesh]

I think what a lot of us need is a switch to reset the immune system.

[issie]

I think what a lot of us need is a switch to reset the immune system.

Yeah, where can I get one of those? Hurry, need that number - RIGHT NOW!!!

Issie

[ramakentesh]

In very dodgy cases they can give patients chemotherapy, literally destroy the immune system and then either give the patient a bone marrow transplant or stemcell therapy to effectively give the person a new immune system.

[issie]

Well, the chemo didn't give me a new immune system - but, at that time in my life - it saved me. If they hadn't gotten the bad bacteria under control and gotten my system to slow down - I wouldn't be here. The re-build seemed to take forever though. I look back on things I've gone through and feel very fortunate to still be here - even if do still have POTS.

[Chaos]

Had a similar situation after a food poisoning episode. It was really miserable and I lost a lot of weight that way. Almost wish I could get it again. LOL My GI doc tested everything known to mankind I think, but couldn't find any good explanations.

My GI had recommended Align but sounds like you already have some good ideas to work with. I had used donatol and a couple others but not a lot of relief. I think it just ran it's (miserable) course. This was before I had a diagnosis of dysautonomia etc

[issie]

mwise,

How are you? Did you get some relief and help? I hope you're on the recovery side of things by now - you haven't posted in a few days. Hope you're okay.

Issie

[mwise]

Hi Issie and all,

My stool cultures came back negative and the GI doctor wants to do a Colonscopy to see what is going on. I am still having bouts but only in the evening after dinner and seems I start cramping and my stomach makes noises about 45minutes to l hour later and that is when I start to empty out quickly every 15 minutes to 1/2 hour until it stops. Wears me out. I did lose 8lbs and holding around 125 which I was 133. Definitely look skinner:(. I did get the Florastor and started taking it. I am still taking the other Probiotic-Advantage. They are both different and I hope it is ok to take both. I see the GI doctor on Friday March 23rd and I will probably have the Colonscopy and I am also going to suggest n Endoscopy too. Might as well have both checked so I can get some type of treatment. Thank you all for caring. I am hanging in there-still eating, staying hydrated and hoping this all stops soon. I just want fixed.

[issie]

mwise,

I'm glad you aren't having it all day. That is a horrible, awful thing and so painful. I hope they can figure out what is going on with you. Hopefully, the probiotics have been a help and is slowing down the problems - at the very least, you're getting good bacteria back in.

Hang In There!

Issie

[songcanary]

Hi Marlene,

Was just thinking of you tonight. I am glad you are able to maintain your diet and hopefully now you can find out what the heck happened. Best wishes on your testing.

[Katybug]

Marlene,

Glad this has slowed down a bit. Have you ever tried a Donatol (Belladonna Alk) script t take when the diarrhea flares up? I don't know if its compatible with your other meds, etc., but, it is the only thing that would stop my acute bouts with this. I was also just saying in another post that I haven't had a bout since Oct. and realized this was when I started taking Depakote (anticonvulsant) as a profilactic for my migraines. After speaking to my migraine/POTS neuro reently, he thinks (although rare but ot impossible in adults) that I was probably suffering from abdominal migraines (andyou don't always have headache pain with an abdominal migraine.)

Hope you feel better and they find the answer.

Katie

[hholmes13]

I've got no advice for you as I don't have any experience with this....but I just wanted to send some positive vibes your way. I hope you get things figured out soon and start feeling better soon! Good luck!

[jackiemxoxo]

I hope you start to feel better. I know it can be miserable. I think it is a good idea you are doing the endo too because it will def tell you more. Also, if you are ever stuck in the hospital with this, I was once told by a GI doc that they can tell what you have by how much stool you are making (parasite, bug, etc). so it is just something to think about. Feel Better!