Lymphocytic Colitis and Microscopic Colitis Club

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Dfoster93 said:
Hi everyone. I had posted on the my story forum but figured I'd update here. My GI doctor told me I was a "special case" because he had never seen someone with Lymphocytic Colitis in the stomach, and colon/intestines out of all the years he's been a GI doctor. They had me on Uceris but I was not getting any better on that so he switched me to Prednisone 40mg since last Saturday. I don't want to get ahead of myself but I already feel so much better than before. I'm not back to 100% again but I am getting there.

Being an already overweight female, losing weight through this actually hasn't been THAT bad of a thing for me. Now that I am feeling better I would like to get back to the gym and working out again. Are there any suggestions as to what I should do in the gym that won't set me back again? I don't want to go and then cause myself anymore problems. I figured I would wait until this coming weekend so I have work off for 2 days after just in case. Normally I do a warm up on the stationary bike, then do abs, and switch days between legs and arms and end the day with a fast walk on the treadmill.

Also does anyone with Lymphocytic colitis ever get a rash? I've had a skin rash for sometime now and once I started taking the prednisone and feeling better, the rash doesn't seem as itchy anymore?
Click to expand...
Hi, I have a facial butterfly rash diagnosed as Rosacea but it tends to flare up when my LC symptoms are worse.
 
Hi, thanks for the reply. I also have fought with extreme fatigue. I have done reading on a lot of stuff and I would say you might want to get tested for Lupus if you haven't already. It has symptoms of a butterfly rash along with extreme fatigue. It is an autoimmune disease and they have linked LC to autoimmune problems as triggering flare ups. It might be worth looking into, it is a simple blood test. I had to be checked for it last spring. They put me on Budesonide oral after 3 months of uncontrolled WD, it shut it down in a few days but at about 3rd week I had a short relapse, don't know if it was something I ate or what but scared me. On my 4th week now then we start the weaning for the next 4 weeks, I am so scared it will start back up again. It is a really strong Corticosteroid so I can't stay on it for long and besides it costs a fortune. Dr said we would try Prednisone next time since it is much cheaper. I also have struggled with weight problems and am worried what these steroids will mean for that.
 
Mommason64 said:
Hi, thanks for the reply. I also have fought with extreme fatigue. I have done reading on a lot of stuff and I would say you might want to get tested for Lupus if you haven't already. It has symptoms of a butterfly rash along with extreme fatigue. It is an autoimmune disease and they have linked LC to autoimmune problems as triggering flare ups. It might be worth looking into, it is a simple blood test. I had to be checked for it last spring. They put me on Budesonide oral after 3 months of uncontrolled WD, it shut it down in a few days but at about 3rd week I had a short relapse, don't know if it was something I ate or what but scared me. On my 4th week now then we start the weaning for the next 4 weeks, I am so scared it will start back up again. It is a really strong Corticosteroid so I can't stay on it for long and besides it costs a fortune. Dr said we would try Prednisone next time since it is much cheaper. I also have struggled with weight problems and am worried what these steroids will mean for that.
Click to expand...
Hi. Thanks for the info. Yes I was tested for lupus with the full panel of blood tests after the initial Anti nuclear antibody (ANA) test that I had in April was positive, the rest of the lupus panel was negative. I have since had a repeat test for the ANA and I get the results at the end of this month. I saw 2 dermatologist s about the rash, 1 privately and the other on the national health system. Unfortunately when I saw them the rash had subsided somewhat but I had photos. The private one said it could be either rosacea or lupus and if it flared really bad again it would be worth while doing a biopsy. He gave me a gel which he said wouldn't work if it was lupus. I applied the gel over the summer and the rash got alot better but I was also feeling better too. By the time I saw the other dermatologist the rash had pretty much gone and she thought it was definitely rosacea. Fatigue is one of my worse symptoms and I also have some neurological symptoms which are still under investigation. I should find out more at the end of Oct.

I have been on 9mg daily of budesonide for the past 6 weeks and have another 6 weeks to go. I then have a review with the gastroenterologist. I am beginning to see some improvement on the whole. I am lucky here in spain that my meds are heavily subsided by the state through the national health system similar to UK so I'm not facing the financial issues you are.

I hope you're situation improves. Stay in touch. X
 
Finally I have a diagnosis and it is Microscopic Colitis. So, hi everybody! I am not at all unhappy about this since I knew SOMETHING was wrong and this is less scary than Crohn's or UC. Doc seems confident a small steroid is going to clear it up. 10 mgs did make a big difference in 10 days. He switched me to 5 mg for the next month. Is everybody else just taking steroids too?
 
I had collage nous colitis along with Crohns. Took about 2years on entocort until it went away. Pred didn't help. But Cipro did short term anyway.
People have tried many many things including standing on there head (really!) to get relief
5 Asa drugs sometimes help
My former GI now retired wrote an article about it.
Pay attention to possible triggers such as NSAIDS and statins
http://www.med.ucla.edu/modules/xfsection/article.php?page=1&articleid=296
 
Welcome CharlotteLucas... Unfortunately not for a fun reason. I was diagnosed in August after a biopsy of my Colon. I was put on Budesonide which is a Cortocosteroid. I was on it for 8 weeks, felt good while I was on it, coming off things backslid a bit. I have spent more attention on the triggers to keep it under check. I have switched to Almond milk, avoid excessively fat foods when I can, try to eat more healthy that has seemed to help keep it at bay. I have quit taking NSAIDs which is hard because some of the cold remedies I am used to using contain aspirin so I have to switch to something else. I was also switched off of my Citalipram. There was some studies showing a link in them to flairs. Honestly it is really difficult at first to give this much thought about everything I am consuming, even cut back on the caffeine.. So I nap at my desk, lol. For me just getting a straight answer about what I had was the big deal for me, the not knowing was killing me. While LC isn't cure able it is manageable so that is reassuring. The big trick is figuring out what sets you off. Good luck, as you begin your journey.😀
 
Thanks Mommason64, this is the beginning of healing and learning how to manage a chronic condition. Wow a lot of people on FB seem to think now that I have a diagnosis I am all better and ready to go back to doing all the crap I used to do for free. Nope, still dealing with my own crap! Literally! Ha!
 
The best part of a site like this is you can talk with people who genuinely understand what you are going through. I have had a few things that have made me take a look at how much I am doing and unfortunately a lot of people are having trouble with me saying no to things. I am slowing learning to take care of myself first. When things are flaring bad I really don't enjoy doing some of the things as much As I used to, mostly because I am constantly searching for the nearest restroom so I can be ready to run! Lol. Not something you want to share with too many people... So I just say no I don't want to go.
 
Hi all, I've recently been diagnosed with Lymphocytic Colitis and have read a ton about IBDs. I have started the Specific Carbohydrate Diet (SCD) and am having some luck, though with the Holiday season I'm finding it hard not to cheat. Yesterday I finished 6 weeks on Pepto chewable tablets 3x/day and am afraid what not taking those might do.
Has anyone done this protocol and/or SCD? I would love your advice/experience since I'm a newbie. thanks so much for any response, Cristina
 
Hi Cristina, I was diagnosed with Chronic Lymphocytic Colitis in Oct, 2014 (10-15 incidents a day). I tried the Bismuth treatment (Pepto) for 6 weeks. I was only able to get my Diarrhea down to around 8/day. I then went on 3/3mg tablets (9mg total) of Entocort/Budesonide, reducing to 6mg, then to 3mg over an 8 week period. I responded within 2 days after taking the Entocort. Unfortunately, after trying to wean me off of them, I completely relapsed. I started taking 6mg of Entocort a day. This time it took 2 months for me to respond. I've been on Entocort for almost a year now. The worst part of this disease is the PAIN!!!!! Sorry to go on and on. I wish you luck and hope the Pepto treatment works. However, for most it does not. As hesitant as I was to try the Entocort, it really worked for me. I'll probably have to be on them the remainder of my life, but hopefully I can get down to 3mg a day. Good luck!
 
I also agree the pepto did not help me control my CLC. I did the 8 weeks Budesonide but honestly once I was off it I have had relapsing problems. It doesn't help that everything is fatty at the holidays. The carry in junk food, meatballs Nd weanies don't help. I have really had to force myself to avoid the high fat foods, dairy and spicy. All of which have been my longtime friends...but not any more. I find a healthier lower fat diet, down to just a couple cups of coffee, buy the fat free flavored creamer, avoid artificial sweeteners, eat more healthy but even with that I have to be careful. No beans...skins of fruits, seeds etc. I hate having to think about what I eat this much, but if I don't I regret it pretty fast. When I even get a slight start again I immediately take an anti diareheal and watch what I am eating. Hope this helps.
 
Hi I have recently been diagnosed with collagenous colitis so it is all really new for me, I had never heard of it before, I was told I had IBS for months before I had a colonoscopy and it was discovered with a biopsy then.
I am seeing my consultant next week to work out a diet and medicine plan and I have read tons about it too but I am glad to have found a site where there are others with it too.
I would like to ask if anyone knows if there might be a connection to CC and Cysitis? I have had two or three bouts of cycitis since my problems with CC started a few months ago, is this coincidence or has anyone else experienced this too? Would be really interested to hear if anyone has.
Thank you.
 
Maybe my question will be weird...
How old were you when you were diagnosed?


I ask because my doctor spoke "you are to young for this"...

I am not from USA. I live in Europe.
 
Nen,

I was 15 years old when I first began experiencing symptoms.

I believe I was diagnosed at the age of 21, or around that age, with MC.

I might suggest, if not already, you might also ask questions about MC on PerkyFarms web sight. I've noticed there are more suffers of the condition actively discussing there.

It can be viewed here ~

http://www.perskyfarms.com/phpBB2/viewforum.php?f=2
 
Hi All,

My name is Kelly and I was diagnosed at 20 back in 2009 with Lymphocytic Colitis. Earlier in the year I had my appendix taken out which I heard frequent diarrhea can cause it to be inflammed. It's been a tough 8 years with many different therapy treatments. I have arthritis and psoriasis, but haven't been diagnosed with anything else. My new GI doctor is starting over and getting everything tested because he finds that it's interesting that I have LC. I've had an endoscopy done back in I believe 2010 to see if I had celiac disease but tests were negative. David mention lumps and my mom has fatty tumors all over her body. I've discovered myself I have two so far, one on each arm. I have a family history of colitis. My grandmother had UC, my brother and his son have Crohns. My grandfather had Lupus and my mom has a thyroid issue. I basically feel like I'm in limbo because there could be other problems and they are just dormant. I'm currently on 6-MP right now because I can no longer afford Lialda when I switched insurances. It's helped for the most part, but it's not that often I am in remission and get super excited when I have solid stools lol. I feel like I've tried everything and it has only helped some. Is anyone else suffering from depression/anxiety and is tired all the time? I would love to meet someone around my area that has LC because I have never met anyone and people don't understand the struggles. I use to dread going anywhere because I was going to the bathroom up to 20x a day. Now it seems to be mostly mid morning/afternoon when I have to frequently go but significantly less. I really like my new GI and hope he has better answers than my other two doctors. I've had three colonoscopies over the years and all point to LC. Curious if anyone is still on this thread.
 
Hi Kelly,
I have not been on this site in forever! I just looked up my password to say Hi. I am in PA. I was diagnosed by the Dr. who actually discovered LC! He is now retired, but he was at Johns Hopkins and they have all his research. I don't know if your insurance pays for it -- but I received great care. I was an absolute mess by the time I was referred to him; he put me on drugs and really took the time to teach me about it and the new habits I had adopt. It made all the difference. Of course, I will always live with it, but normally I can keep it under control. Every bodies body has its' own set of rules for this stuff. Good luck.
Lorna
 
I am recently diagnosed with Collagenous Colitis. I am on my second flare up. I am taking Budesonide for one week. Could anyone advise when it will kick in and my pain stop? THank you
 
Hi All
Beach thank for the answer. I forgot the password and I have a new account.

Cindyhelg I have another type of Colitis (Lymphocytic Colitis). I have been in hospital for many times and I have been taking many pills. I took budesonide twice times. For the first time I took 3 pills of budesonide every day for 2 weeks but I had trouble when I change a dose from 9 mg (3 pills) to 6 mg (2 pills) and then everything started again.
For the second time I took budesonide much longer. I remember that diarrhoea stopped before 7 day but bowels were pain longer. Everyday pain were lower than day before. When I ended all therapy I didn't feel any kind of pain inside my body.

Are you on a special diet?


I know that my English isn't improve but I try. If someone has a trouble to understand me please send me message.
 
Hi Nen, thank you for your reply. Your English is very good and I understand you. The diarrhoea is not as bad this time but the pain is really bad. I am taking 3 Budesonide daily 9mg. I am seeing a Dietician tomorrow. I do have a good diet so am interested in what they are going to advise. Will let you know. I'm not sure how long I am supposed to carry on with the Medication though. Cindy
 
Hi Cindy

My therapy took more than 8 weeks in changed doses (9 mg 4 weeks, 6 mg 2 weeks, and 3 mg to the end), but it was too long.
I took longer, because I had the last one exam on my studies. In my case gastroenterologist decided that treatment should be longer.

In normal situation it should take less than 8 weeks. Doctor decide when you change dose. You can't decide alone!
Probably about changing doses (when) you have in documents from hospital or from doctor.

If you must take budesonide longer than 8 weeks for some strange reasons (which it may be associated with stress or when you feel badly), than you should go to gastroenterologist or to GP. Doctor should decide about this.
 
Hi Nen, thank you for your reply, I'm only two weeks in so a while to go, still got pain. Dietician pleased with me as have already taken right path, probably need to drink more water and change a few cereals but not bad alround. Good luck to you, and hope yours now under control.
 
Cindyhelg said:
Hi Nen, thank you for your reply, I'm only two weeks in so a while to go, still got pain. Dietician pleased with me as have already taken right path, probably need to drink more water and change a few cereals but not bad alround. Good luck to you, and hope yours now under control.
Click to expand...

Hi Cindyhelg

How are you?
 
Hi Nen, I am the same, the Steroid tablets didn't work. I am being referred to the Gastrologist at hospital. I have had the pain since January, pretty fed up actually. I have stopped taking my medications for my arthritis because I think these aren't helping. How are you? Thanks for your e-mail. Regards Cindy
 
Hi Cindyhelg
I'm fine, thank you.
Everything has stopped. I have been living almost normal since February, but I have to take every day tablets (without Steroids) and I have to keep my diet. I am worried about my weight, I still lose it. I don't know why that is happening.
How long have you been waiting to Gastrologist?
 
Oh that's really good news. My weight is the same, I did put weight on because of my Arthritis and can't seem to lose any. What tablets are you taking daily? There are long waiting lists here, my Doctor has said he will try and hurry it up but not holding my breath. Regards to you and glad things working for you now, keep in touch.
 

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