Share Facebook
Crohn's Disease Forum » General IBD Discussion » Microscopic Colitis » Is remission possible and how



03-06-2014, 10:25 PM   #1
gubnett
 
Join Date: Mar 2014
Location: thornbury, Ontario
Is remission possible and how

How do I go into "remission" - after 7 months of hell with diarrhea - bloating - chronic fatigue and exacerbated arthritis - the only meds I have been prescribed are lomotil - one at night and one in the morning. Could poop for England and win the gold even taking these pills. I have been reading about people going into remission - what can I do?
03-07-2014, 04:08 AM   #2
Jennifer
Adminstrator
 
Jennifer's Avatar
Hi gubnett and welcome to the forum!

I don't have Microscopic Colitis myself but I do know that remission is possible and that there are better treatments than just Lomotil (that's not even a treatment really). Here's some further reading: http://www.mayoclinic.org/diseases-c...t/con-20026232 and http://www.crohnsforum.com/wiki/Microscopic-Colitis

I'm going to tag David as he may be of more help.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
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, 17 years and counting.
03-07-2014, 03:02 PM   #3
gubnett
 
Join Date: Mar 2014
Location: thornbury, Ontario
Most if not all of the threads indicate use of steroids - not sure I want to go that route just yet although I have had diarrhea since last June 2013! The gastro specialist suggested I give up milk ergo lactose - I can do without the milk but I love cheese - some suggest going glutenfree - I actually don't eat a lot of bread or cookies. The gastro guy also suggested renatidine or zantac for severe acid reflux which is what started the whole thing in the first place. I have not had this problem prior to the use of these pills which I have since given up. What else can I do? Also, not sure what questions to ask my GP.
03-07-2014, 04:48 PM   #4
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Hi gubnett, welcome to the forum. I know a little bit about microscopic colitis (I'm not fully diagnosed yet but my GI has been leaning towards microscopic colitis). You don't necessarily have to go on steroids to get into remission. Having said that, full disclosure, steroids (Entocort) were what got me into remission in the past and I'm back on steroids trying to get back into remission now. However, a high percentage of microscopic colitis patients respond very well to high-dose Pepto Bismol. I know, it sounds strange, but it really works in a lot of cases. Here's a link with more info on that (scroll down to the last page):
http://www.hopkinsmedicine.org/gastr...ic_colitis.pdf

As for removing lactose - I'm lactose intolerant too. Fortunately there are some good "dairy-alternative" products out there. As for cheese - I have tried the various cheese substitutes like soy cheese, rice cheese, etc. I didn't like any of them and none of them melted on a pizza very well. Then I found goat cheese, which doesn't give me trouble the way that cow dairy does. It has a bit of a strong taste but it's not bad. If there's a Trader Joe's near you, they carry a goat gouda which is lovely - it smells a bit strong, but the taste is mild, particularly when melted. Sheep's cheese is milder but it's even harder to come by - I can only find it at the local farmer's market and it's quite expensive, but it's a nice splurge every so often. I would say experiment with various goat cheeses and/or cheese substitutes and see which ones you like and work for you. The same goes for other products - try things like almond milk, hemp milk, etc. I can't handle coconut but I've heard coconut milk yogurt & ice creams are nice.
03-10-2014, 09:54 AM   #5
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome to the community.

Can you describe all of your symptoms, how they diagnosed you with microscopic colitis, and what tests you've had done?

Thank you.
03-10-2014, 11:28 AM   #6
gubnett
 
Join Date: Mar 2014
Location: thornbury, Ontario
Thank you for your reply. I had the colonoscopy - up and down - stool samples given - result microscopic colitis. Never had this previous to taking acid reflux meds - renatidine - then losec, then tecta. Experienced dreadful diarrhea with all of them. Then had all the tests done. Gastro specialist suggested i give up milk. On Lomotil which I take at night before bed - I can almost live with visiting the bathroom 2 in the a.m. and 3 in the p.m. but the other problems that seem to develop when colitis is diagnosed are making my life dreadful. Chronic fatigue - and my arthritis has gone beyond the point - swollen hands and feet! Drugs that I am on, mild blood pressure pill, HRT (so I don't kill my neighbours) and I had to ask him to put me back on an NSaid - albeit a mild one to take the edge off the pain. I went off the NSaid (difloenac - difene) and still had the diarrhea. What next.
03-10-2014, 11:32 AM   #7
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
I personally had to completely change my ways to get to remission. You can read about it here: http://www.crohnsforum.com/showthread.php?t=43814

It's not at all easy but good god do I feel healthy now.
03-10-2014, 04:59 PM   #8
gubnett
 
Join Date: Mar 2014
Location: thornbury, Ontario
I have read your reply and the showthread, I don't know whether I have that kind of dedication!
07-06-2014, 05:02 PM   #9
iriechic
Senior Member
 
iriechic's Avatar
 
Join Date: Jul 2013
Location: St. Petersburg, Florida

My Support Groups:
Sorry you have this G-d awful disease. I have hired four different nutritionists, Dr. Dahlman, Roxanne Smith, Mihaela (?) GAPS nutritionist, and an ND for SCD. I had 3 allergy tests, all with different results. I have spent four years with at least three months on each diet approach, including elimination diets. Contrary to what others believe, I do not think diet alone can bring remission on for all. I do not like steroids but unfortunately LC/celiac has me between a rock and a hard place. I hope you do go into remission and soon. Good luck!
07-08-2014, 07:30 AM   #10
gubnett
 
Join Date: Mar 2014
Location: thornbury, Ontario
Hi everybody, I finally thinnk I am in remission without taking steroids - I no longer drink milk - used to drink 1 pint a day, have done all my life. Take 1 lomotil after dinner and that is it. Usually go twice in the morning and then I am set for the day - not a problem! I cut down on the lomotil cos it has atripine in it which is a narcotic and if I took one in the a.m., I found I was falling asleep during the day - not good if you are driving! So right now, everything is hunky dory! Thanks everyone for all your help.
07-08-2014, 05:15 PM   #11
iriechic
Senior Member
 
iriechic's Avatar
 
Join Date: Jul 2013
Location: St. Petersburg, Florida

My Support Groups:
Glad you are feeling better.
01-07-2015, 07:11 PM   #12
swerdna
 
Join Date: Jan 2015
I was officially diagnosed with collagenous colitis last April 2014 after months of chronic, watery diarrhea (up to 10+ times per day and up in the night and some nocturnal incontinence) and endless tests, procedures, and even a hospital stay due to complications that came up in the middle of all of this. I finally had a colonoscopy and endoscopy with biopsies to get an official diagnosis.

After my diagnosis I was put on Entocort and followed that regimen as indicated by my GI doctor...it worked almost immediately...within a day or less. Miracle.

Once I weaned off, within a few days my symptoms returned and I restarted the Entocort and within 24 hours things were fine.

I then stayed on the lowest dose of Entocort possible, got it down to 1 capsule every other day plus 1 Imodium and all was fine.

Decided to try going off everything completely over my Xmas holiday from school and see what happened and magically, my symptoms have stayed in remission for almost a month now.

I do not take anything except my daily generic fiber powder to keep me firmed up (sorry if TMI).

Throughout all of this I did not test positive for anything else GI related and have not had to restrict my diet in any way at all. My CC did not seem to be related to anything I was eating or not and while in the throes of it I tried some elimination diets and nothing made a difference.

It just appeared one day out of nowhere and now has disappeared much the same. I am hoping and praying it stays in remission but have my Entocort with me all the time just in case. For me it starts with stomach gurgling in the evenings and then I know things are revving up.

For me the Entocort worked to put my symptoms into a clinical remission, returned once after stopping the medication and I am now medication free and hoping it stays like that for the rest of my life!
01-08-2015, 08:21 AM   #13
gubnett
 
Join Date: Mar 2014
Location: thornbury, Ontario
I take one lomotil in the evening - I still visit the bathroom 3 times a day but the worst seems to be the amount of air - flatulence - that precedes a bowel movement. Anyway, other than that, I think I have it under control. Thanks again.
01-10-2015, 09:39 PM   #14
swerdna
 
Join Date: Jan 2015
Well, all good things must come to an end I guess...I have been off my Entocort, was down to 1 pill every other day plus 1 Imodium...then was able to go off it entirely for 4 weeks but things revved up again starting about 2 days ago and the stomach gurgling started and that was the beginning of the end for me. I had a horrible night running to the bathroom and started taking Entocort again and things have settled down but I am so bummed...had been 4 weeks w/o anything and then, bam, it just showed up again with no warning or reason. This is the weirdest and most frustrating diagnosis ever. I plan to stay on the Entocort, hope to be able to do the lowest dosage possible to keep my symptoms in check and then maybe try going off again this summer when my teaching schedule is not an issue. Sigh.
02-22-2015, 07:35 PM   #15
swerdna
 
Join Date: Jan 2015
I have been off Entocort for a few weeks now, just don't want to be on any prescription medication...right now I am controlling my CC symptoms by taking 1 imodium and 2 generic fiber tablets each morning...plus I am eating a serving of Greek yogurt with 1/2 a serving of Kellogg's Bran Buds mixed in...not sure why but this combination has totally settled my GI system down...no more gurgling or WD, fairly normal morning BM and that is that. My hypothesis is that the imodium keeps the GI tract somewhat calm and the fiber and bran help keep things firm...might try to eliminate the fiber tablets and see what happens. It's been great to not be running to the bathroom or having the gurgling stomach that is always a signal of not so fun times ahead. For whatever reason, this combination is working for me right now. I do not seem to have any food intolerances like a lot of people but I didn't have them before my CC symptoms appeared either.
02-03-2016, 12:16 PM   #16
swerdna
 
Join Date: Jan 2015
I haven't been on this forum in ages and thought I would check in and do a bit of reading.

Since posting I have discovered a few food triggers that seem to set my CC off within a short amount of time...spinach I absolutely cannot tolerate, very sad...peanuts either, but almonds are okay...I think anything with onions in it can be an issue and recently have found that salsa is not my friend.

I decided to try kale in my protein smoothies which I used to do with spinach and loved and the kale, for whatever reason, does not upset my system at all.

If anything, it has seemed to normalize things.

I still take 2 fiber capsules every morning but no Imodium or entocort for a long time.

If I avoid spinach, onions, peanuts and salsa...I seem to be okay.

It amazes me how fast a trigger food can set things into motion...I have had enough times where I forgot about spinach and had it in a salad without thinking and by the time I got home from lunch things were not fun.

Very bummed out about the salsa yet if I have it in a hot dip and not by itself, it doesn't seem to bother...weird.

The last time we ate out and we had chips and salsa before our meal, I had a horrible rest of the day and next so have sworn off that combination.

Considering how bad things were for me 2 years ago I cannot complain I guess as I have things under control for the most part.
Reply

Crohn's Disease Forum » General IBD Discussion » Microscopic Colitis » Is remission possible and how
Thread Tools


All times are GMT -5. The time now is 02:47 AM.
Copyright 2006-2017 Crohnsforum.com