Hello!

[andigaut]

My name is Andrea and here is my story. On New Years Eve, 2005 I had planned to go out with friends to celebrate but instead, I was stuck at home with nausea, vomiting, diarrhea and a fever. I figured it was just a virus. I was busy with work and school and even though the nausea, diarrhea and low grade fever continued, I put off going to the doctor for an entire year. Looking back now, I don't know how I lasted that long! When I finally went to my PCP, she sent me to a GI specialist. After a million tests I was diagnosed with Lymphocytic Colitis. I had just graduated from nursing school and took a job in the Emergency Department as a graduate nurse intern. Pretty stressful job and even though I was sick before I took the job, I wonder if the stress made it worse... I ended up on a medical leave after 1.5 years and eventually I quit the ER and took a less stressful job. During that time, my diarrhea was so freaking bad that I had frequent fecal incontinence and if I was out somewhere and couldn't get to the bathroom quick enough, my stomach would cramp up so bad and I would get immediate nausea/vomiting. I was miserable! Meds I've tried include Pepto Bismuth, mesalamine, budesonide, loperamide, promethazine and zofran . I ended up going off all the meds except zofran because while they DO stop my diarrhea, they stop it so much that I get horrific constipation and end up in the ER. My symptoms started resolving around 3.5 years and life was good!

Then about 3 months ago, my boyfriend and I both came down with stomach aches, diarrhea and fevers. His symptoms all resolved but my diarrhea never went away. It's been 3 months and the I am going probably 8-10 times a day. I eat something, run to the bathroom and can see exactly what I ate. The last time I was sick, they had me swallow the camera/pill and it showed my gastric emptying time was less then 3 minutes.
The nausea, fevers and stomach cramps are back and I also have a constant, vague kind of headache. Oh - and anal itching - it is HORRIFIC! I went back to the GI specialist (whom I don't really like b/c I feel like he doesn't really listen to me). He said to try pepto again. I did, it turned my diarrhea black but didn't slow it down. He said to try loperamide again. I did - I took a total of 3 pills yesterday - the diarrhea stopped but i had horrible stomach pain, gas, and nausea for the rest of the day. I was so freaked out that I was going to end up constipated... I finally went today - it was diarrhea but I've only gone once today, which is an improvement.
Anyway - when I saw my GI guy a few months ago, he said I probably have Crohns and said to call him if the loperamide/pepto doesn't help in 2 weeks. I haven't called him b/c at the end of my appt he said that we should discuss surgical options. That freaked me out and is another reason why I don't like him. (I could go into that more but I won't bore you!) I also have access to all my medical documents b/c I work at the hospital and when I read the notes he writes, I get mad b/c it's obvious that he doesn't listen to me!

Have any of you guys went from Lymphocytic Colitis to Crohns? Has anyone else experienced the same problems with the meds? Anyone else have the itching?
Thanks!!
Andrea

 

[Dexky]

Welcome Andrea!! I've been reading this forum for the last 6 months or so and I don't think I've ever seen Lymphocytic Colitis on here!! What is the difference with LC and ulcerative colitis?

 

[andigaut]

Lymphocytic and Collagenous Colitis are both forms of Microscopic Colitis. Which from what I gather means that it is only observable via biopsy under a microscope. :/

 

[Dexky]

Andrea, have you looked for a new GI? What form of mesalamine were you on? EJ's diarrhea responded quickly to a quick prednisone taper along with 2400mg Asacol/day. Have you discussed pred with your GI?

 

[ant]

Hello Andrea,

I too have just joined and have Lymphocytic Colitis. I do not have Crohns. Your story sounds very familiar.

My symptoms started about two and a half years ago. They were chronic diarrhea, often watery, and seem to have been set off when I had a high fever and 'flu' in the head and throat which move down to the stomach.

Initially I just thought it was "Delhi Belly". But diarrhea did not go away. There followed about 3 and half months of various antibiotics (on and off) and simple diet - no red meat, no shell fish, no alcohol, keeping off curries, no coffee, not much milk etc. (but lots of spaghetti and toast). Nothing improved so I had a colonoscopy.

LC was diagnosed. Straight on to Pepto Bismuth for 8 weeks with initially pretty good results. Relaxed my diet restrictions (but stayed off milk) and was about 80% ok with BMs.

Then came off Pepto and gradually diarrhea returned. Tried to stay off Pepto - as I know it should not taken for too long - , but ended up relying on it. Sort of in self-denial for 9 months when I went back to the GI and he put me on Entocort - 9mg for 8 weeks.

The Entocort worked and I gradually tapered off...... only for chronic watery D to come back. I went back on Entocort and worked down to 3mg every other day.

I have twice tried to come off it completely but the flare has returned. However, I do feel my gut is very, very slowly healing (much less frequency and bloating).

I believe the key to this is the meds combined with a Gluten, Dairy and Soy free diet which I went on about a year ago. (I had noticed that even with the Entocort at a high dose whenever I eat any of these ingredient I got a reaction within one to 12 hours - gurgling, bloating and urgent D). Also I have two celiac predisposing genes and Osteoporosis (which developed before I was taking Entocort).... all of which suggests Gluten Intolerance and a history of malabsorbtion.

So Andrea, I completely empathize with story of dealing with your GI, and he probably has never suggested diet as a long term addition to treatment. I really hope that before you get drawn into the need for surgery you can see some progress that way.

All best, Ant

 

[Dexky]

Welcome you too Ant!!

 

[ant]

Thanks Mark,

Best, Ant

 

[DustyKat]

Hi Andrea and :welcome:

I'm glad you found your way here. Sorry I can't help with your questions but I hope you stick around 'cause this is a great place for support and info and we would live to have you here. Good luck!!!

Take care,
Dusty

 

[joefnh]

Andrea I was diagnosed with Crohns and Collagenous Colitis in April 2010 and had a pretty similar story as yours. With either collagenous colitis(CC) or lymphocitic colitis ( LC) there are several options for medications and most importantly a simple diet in combination with medication(s) can make all the difference in the world. In LC The colonoscopy is normal but the mucosal biopsy reveals an accumulation of lymphocytes in the colonic epithelium and connective tissue (lamina propria). Its this difference in the tissues of the colon or intestine that results in the pain and D of LC

The inflammation that results is what causes the D and the nausea. Like you I have a very fast emptying times and have pain and cramping. Second what causes the ongoing irritation is due to food sensitivities. Most likely to gluten, soy and maybe dairy.

I and many others have found quite a bit of relief from a combination of diet (no wheat products, soy and maybe dairy) with some medication(s). One medication that is commonly used Entocort EC, a steroid which stays mostly in the GI tract with very little making it into the bloodstream, therefore reducing the steroid related side effects. For myself initially Entocort worked quite well and I am now transitioning to Imuran to reduce my need for steroids.

There are several other medication choices depending on the severity of the disease that have an excellent track record of controlling LC. I should stress the point though that in both LC and CC addressing the dietary sensitivities is as important as the medications. There are many mainstream medical studies that support the dietary issues with LC (or CC)

With the diet and the meds I have achieved almost a 100% reduction in symptoms for both Crohns and CC although I do notice if I have any of the restricted items on the diet that my symptoms of D, nausea and pain return. For instance last Sunday I had a baking mix that had soy in it and this resulted in D and nausea within hours.

Andrea to finish up here

First get a second opinion ASAP, your doctor should have discussed the dietary aspects first in combination with the meds. A stronger med that can replace the Entocort is Imuran which s quite helpful. Imuran is a fairly potent immunomodulator medication that helps reduce the autoimmune reaction that is active in LC or Crohns. Similar to Imuran (6mp) there are other immune system modulators like Methotrexate, Humira, Embrel or Remicade all of which are quite helpful with LC, CC and Crohns

Second visit the website below, I hope you do not need to have surgery, especially with that limited of a diagnosis and trial of meds. Long before the surgical option you should try more direct medications like Imuran or even Methotrexate. I cannot stress enough how much diet affects LC. Surgery is very very rarely needed for LC.

Have you had any imaging studies that have confirmed the presence of Crohns?

A great website that deals specifically with LC or CC is

perskyfarms.com/phpBB2/index.php

Check out the main message board and post your story there.

Best wishes

--Joe

PS: Good to see you here Ant

 

[andigaut]

Hi all! Thanks so much for the replies!! I never knew there was a group specifically for microscopic colitis!! When I was first diagnosed, there was nothing out there!
Mark~ I don't remember what form of mesalamine I was on but I DO remember that they were huge blue capsules and I was on 8 capsules a day. I was also on budesonide (Entocort). The problem I have with meds is that they do stop my diarrhea, but then I don't go at all and I get major constipation and end up in the ER with horrific abdominal pain... But on a good note - I did take those 3 loperamide's the other day and I have really slowed down a lot since then. I finally had a semi-soft BM instead of pure liquid. It was skinny, which means there is some inflammation but it was still so much better then water!
My GI guy did talk to me about diet - but nothing specific, he just said to eat meat and potato's. I tested negative for Celiac's, but I definitely think I will give gluten free a try. Thanks to all of you for your responses and the great info, I appreciate it!

 

[Astra]

Hi Andrea
and welcome

I wouldn't touch red meat if you paid me!
I have lots of success with the low residue diet, white bread, white rice, potatoes, white pasta, chicken and turkey, bananas, nothing coloured, you can find this on the WikiForum
hope you get some relief soon

and this goes for you too Ant big welcome to you both

lotsa luv
Joan xxx