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08-29-2014, 05:47 PM   #391
SamIAm
 
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Hi all - figured I'd pop in for an update. The budesonide taper worked like a charm for me! Until I stopped taking it. Had a follow up with my GI doc last week, and she ran tests to check for other autoimmune disorders and gave me a new prescription for more budesinide - a longer taper this time. 9mg/day for 6 weeks, 6mg/day for 6 weeks, 3mg/day for 6 weeks, 3mg/every other day for 6 weeks, then 3mg/every 3 days for 6 weeks. And if at any time symptoms start to come back, to step back up to the last successful dosage. Ugh. Not terribly excited to be on a corticosteroid for a year, but I guess it's better than dealing with the LC. It was sooooo nice to feel like a normal human all summer when I was taking it. I had energy, no sprinting to the bathroom, no horrific pains - it was awesome! Can't wait to feel good again in a week or two when the drugs kick in. Also keeping my fingers crossed that my blood work all comes back clear - she seemed to think that since I have LC that it's very likely I have another undiagnosed autoimmune disease. Here's hoping the LC is all I have - because heaven knows that's enough!
08-29-2014, 09:58 PM   #392
sfmreb2
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Budesonide is back. This time my GI is having me do 4 months at 9mg, then 6mg for a month, then 3mg for a month. I think I might go for a longer taper like SamIAm is doing. It sounds better than just stoping cold turkey at 3mg. It is to bad a person could not just keep taking 9mg for a maintenance drug. Oh well. We can just keep trying. Maybe someday someone will find something better.
10-21-2014, 10:39 AM   #393
osbel
 
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Location: Brandon, Mississippi

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Hi everyone. I was just diagnosed with LC last week and found this forum while looking into its effects on my Navy career. I have alot of other stuff going on and the doctors don't know if everything is connected or not. I was in the hospital 3 times over the summer (third was for D) and am currently seeing many specialists. They are currently looking at/diagnosed me with: metabolic acidosis, interstitial nephritis, hypogammaglobulinemia, LC, elevated live enzymes, acid reflux, low testoerone, hypertension, significant fatigue, weight loss (25lbs in about 2 months and still dropping) chronic sinusitis, obstructive sleep disorder (just below apnea, getting retested soon) and a lot more head scratching. I have had D 3-15x/day for over 3 months now. My first colonoscopy showed signs on Crohn's or Celiacs with negative biopsies (celiac blood test was negative too) but the second one looked clear. The biopsies from the second are what showed LC. I have read and seen that I could still have Crohn's or celiacs even those my second scope was clear. Is this true? I have also seen connections between LC and CVID. I am currently prescibed the pepto treatment but it has done nothing so far. Does anyone know if LC is something I will get medically discharged for? With my job I can't stay in if I am non-deployable and I will lose my job code if I don't get to a ship by next October (civilian docs want me to stick around for a year at this point). I am sorry that this is a ramble but I just don't know how to get all the info I want out in a clear way
07-07-2015, 07:23 PM   #394
Jen C
 
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Budesonide is back. This time my GI is having me do 4 months at 9mg, then 6mg for a month, then 3mg for a month. I think I might go for a longer taper like SamIAm is doing. It sounds better than just stoping cold turkey at 3mg. It is to bad a person could not just keep taking 9mg for a maintenance drug. Oh well. We can just keep trying. Maybe someday someone will find something better.
I am on entocort too but my doctor has said nothing about only being on it for a short time. Is it a short-term treatment? As soon as I skip a daily dose, my diarrhea is back full force.
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Lymphocytic Colitis
Currently on Entocort
08-07-2015, 02:26 AM   #395
danialys
 
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Location: New York
I am 15 and was diagnosed with Lymphocytic Colitis about 6 months ago.

I go through extreme stabbing pain in my intestines every day, several times usually. Sometimes it lasts a full day, other times only a few minutes. It is completely unpredictable and impossible to find a pattern. I am taking Lialda and I just got off Uceris. I also have extreme heartburn so I take Prilosec (I think that's how you spell it...) I also am extremely dizzy everyday and am very nauseous every time I consume anything and have a throat problem where it hurts to swallow anything. I also am unable to smell anything.

Has anyone ever heard of someone as young as me having all of this? I have no idea if any of it is connected but the whole thing is getting very frustrating. It is getting slightly better, but I am going back to school soon and it is very difficult to get through school (expecting high A's) with extreme pain all day. I missed four months of school this past year because of this pain, and I am repeating the grade this coming up year. I just hope I don't have to repeat it for a 3rd time.
08-07-2015, 02:27 AM   #396
danialys
 
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I also have celiac disease and bursitis in my knee
08-07-2015, 07:06 AM   #397
Jen C
 
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Location: Pueblo, Colorado
I am 15 and was diagnosed with Lymphocytic Colitis about 6 months ago.

I go through extreme stabbing pain in my intestines every day, several times usually. Sometimes it lasts a full day, other times only a few minutes. It is completely unpredictable and impossible to find a pattern. I am taking Lialda and I just got off Uceris. I also have extreme heartburn so I take Prilosec (I think that's how you spell it...) I also am extremely dizzy everyday and am very nauseous every time I consume anything and have a throat problem where it hurts to swallow anything. I also am unable to smell anything.

Has anyone ever heard of someone as young as me having all of this? I have no idea if any of it is connected but the whole thing is getting very frustrating. It is getting slightly better, but I am going back to school soon and it is very difficult to get through school (expecting high A's) with extreme pain all day. I missed four months of school this past year because of this pain, and I am repeating the grade this coming up year. I just hope I don't have to repeat it for a 3rd time.
Do you have a gastroenterologist or are you using just a primary care doctor to treat all your issues?
08-10-2015, 08:05 AM   #398
Dfoster93
 
Join Date: Jul 2015
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?
09-18-2015, 08:36 PM   #399
Mommason64
 
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Looking for anyone who knows about Lymphocytic colitis. I have a lot of random pains in my body does anyone else have this sort of problem? I had come across something that mentioned pains in legs and joints but can't find anything more about it.
10-11-2015, 12:59 PM   #400
Mickyaela
 
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Looking for anyone who knows about Lymphocytic colitis. I have a lot of random pains in my body does anyone else have this sort of problem? I had come across something that mentioned pains in legs and joints but can't find anything more about it.

Hi, I was just diagnosed with lymphocytic in Sept. I do get achy joints sometimes but as yet I don't know if the cause is the LC or something else. I also get a lot of fatigue and aching muscles which I believe is connected to the LC.

10-11-2015, 01:02 PM   #401
Mickyaela
 
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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?
Hi, I have a facial butterfly rash diagnosed as Rosacea but it tends to flare up when my LC symptoms are worse.

10-12-2015, 06:57 PM   #402
Mommason64
 
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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.
10-13-2015, 03:59 AM   #403
Mickyaela
 
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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.
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

12-07-2015, 08:13 PM   #404
CharlotteLucas
 
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Join Date: Sep 2015
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?
12-07-2015, 08:34 PM   #405
Robrich
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Location: SoCal

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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/xfse...&articleid=296
__________________
DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
probiotics
d3, calcium, k2' magnesium, resveratrol,
Turmeric,paleo, bone broths
Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
Entocort
6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.
12-07-2015, 10:34 PM   #406
Mommason64
 
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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.😀
12-08-2015, 12:07 PM   #407
CharlotteLucas
 
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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!
12-08-2015, 08:01 PM   #408
Mommason64
 
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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.
12-13-2015, 03:21 PM   #409
mcaguie
 
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Location: Boulder, Colorado
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
12-31-2015, 07:31 PM   #410
krsmith002
 
Join Date: Dec 2015
Location: Bloomington, Illinois
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!
01-01-2016, 06:14 PM   #411
Mommason64
 
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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.
06-02-2016, 12:13 PM   #412
jacks
 
Join Date: Jun 2016
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.
11-10-2016, 02:46 PM   #413
nen
 
Join Date: Nov 2016
Location: Czech Republic
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.
11-10-2016, 05:49 PM   #414
Beach
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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
01-11-2017, 02:58 PM   #415
toader
 
Join Date: Jan 2017
Location: Columbia, Maryland
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.
01-12-2017, 07:02 PM   #416
Lorna
 
Join Date: Sep 2012
Location: blue ridge summit, Pennsylvania
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
02-26-2017, 01:26 PM   #417
Cindyhelg
 
Join Date: Feb 2017
Location: Chester, United Kingdom
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
02-28-2017, 04:44 PM   #418
nen1
 
Join Date: Feb 2017
Location: Czech Republic
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.
02-28-2017, 06:21 PM   #419
Cindyhelg
 
Join Date: Feb 2017
Location: Chester, United Kingdom
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
03-06-2017, 01:22 PM   #420
nen1
 
Join Date: Feb 2017
Location: Czech Republic
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.
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