Colitis – Microscopic/Lymphocytic/Ulcerative

Posted by Kristi Motch @kristimotch, Jun 1, 2012

I am looking for others diagnosed with microscopic colitis. I’m new to the group and the condition. Any help or information about what my future holds would be appreciated.

@helron

If I walk too much I get diarrhea run to bathroom this goes on for hours sometimes days. I have been on Apriso for a few years. Just seems I can't win. Stay around the house even if I mop or run vacuum this happens. I have spinal stenosis that has been painful I have received therapy and shots in the spine. I wonder if the nerves in spine being crushed that causes this problem? It's only been happening for about a 6th month period. Ah well if anyone else has this I would like to know how your quality of life is. Thank you.

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I’m so sorry you’re experiencing this, and I do understand. I was taking mesalamine for a few months (generic for Lialda) to keep my ulcerative colitis under control. Unfortunately, I developed acute pancreatitis from the mesalamine and was told by my GI doc to discontinue immediately. Within 13 days, I was in another wicked flare – bloody diarrhea every single day for a month now, despite using Uceris rectal foam (budesonide). As far as how this affects my life – it’s horrible! I can’t leave the house! My GI doc is getting me ready for biologics, Entyvio, to be exact, and I am terrified of the side effects! But this bloody constant diarrhea 6-12 times a day has just destroyed my quality of life! I was healthy and looking forward to retirement and so far, it has been a daily struggle just to do normal things. I hate living like this and it breaks my heart what it’s doing to my husband. It’s a hell of a way to live and I am hoping there will be a safer medicine for this devastating chronic disease!!! Talk to your GI doc; there are different amounts of mesalamine you can take, or maybe it’s just not working for you anymore. I feel for you! I understand what you’re going through and I hope you are able to get some relief!! Good luck!

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Now in my 4th week of Budesonide, but still only 3mg once per day. My main problem was constant D and frequent urgent trips to the barthroom (6-9 times daily), with some fatigue. I've never had any pain, dissension, weight loss, etc. The D comes in cycles, which originally made me think my problem might be a parasite of some sort, but my GI specialist doesn't think so.. More likely the "cycles" are probably related to something I'm eating.

Its hard to say whether the result thus far is the medication or the fact that I've altered my diet considerably. I'm also using Metamucil daily, which I believe is helpful. Presently I'm also waiting for results from Enterolab in hopes of taking a shortcut to identifying food sensitivities or allergies. Once I finish the remaining 4 weeks, if there's no significant change, I'm going to have a conversation with the doctor on why I'm on 3mg/day rather than the 9mg/day which seems to be standard. For now, I'm willing to do it his way.

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If I walk too much I get diarrhea run to bathroom this goes on for hours sometimes days. I have been on Apriso for a few years. Just seems I can't win. Stay around the house even if I mop or run vacuum this happens. I have spinal stenosis that has been painful I have received therapy and shots in the spine. I wonder if the nerves in spine being crushed that causes this problem? It's only been happening for about a 6th month period. Ah well if anyone else has this I would like to know how your quality of life is. Thank you.

REPLY
@helron

If I walk too much I get diarrhea run to bathroom this goes on for hours sometimes days. I have been on Apriso for a few years. Just seems I can't win. Stay around the house even if I mop or run vacuum this happens. I have spinal stenosis that has been painful I have received therapy and shots in the spine. I wonder if the nerves in spine being crushed that causes this problem? It's only been happening for about a 6th month period. Ah well if anyone else has this I would like to know how your quality of life is. Thank you.

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Hi @helron,

I thought you might like to connect with a few members who’ve also written about Apriso or some form of mesalamine. Please meet @guener @fa7100 @dval @delicht.
How are you doing? Are you able to share what type of colitis you might have?

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@kanaazpereira

Hi @helron,

I thought you might like to connect with a few members who’ve also written about Apriso or some form of mesalamine. Please meet @guener @fa7100 @dval @delicht.
How are you doing? Are you able to share what type of colitis you might have?

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My husband has microscopic colitis which he could always control with large doses of pepto bismol. Recently however he has had a four week period of diarrhea that is not helped by pepto or even kaopectate. He decided to go off gluten to see if that would help. That has not helped. He has an appointment with a new GI doc tomorrow. I’m assuming he will offer another med that may help. Is anyone on a specific med for this condition that has helped?

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@dval

I am new to the group, too, and am seeking advice/information on Ulcerative Colitis. I am a 62 year old female, diagnosed with UC 2 years ago. I had been on oral mesalamine, which worked for 3 months until I developed acute pancreatitis (drug induced). Prior to that, I had been prescribed Canasa (suppositories), Uceris rectal foam, hydrocortisone (oral and rectal). GI doc is pushing ENTYVIO and I am terrified of possible side effects. I am still in relatively good health, never smoked, do not drink, eat a healthy diet and exercise regularly. I am waiting for an appointment with integrative medicine doctors to try acupuncture and herbal treatments like aloe vera and Boswellia? Has anyone been on Entyvio or tried more natural things for Colitis and have they helped? The biologics and their side effects scare the hell out of me! The fact that I developed pancreatitis from 4.8 G of mesalamine daily was frightening and GI doc said that was a rare side effect. This is a horrible debilitating disease and I just want my life back. I have had bloody diarrhea daily for almost 2 years, other than for the 3 months I was in remission on the mesalamine. I can barely maintain 110 pounds and rarely leave the house. Has anyone had good or bad results with their UC treatment? I also take a probiotic (VSL#3) that the GI doc recommended and I just started to take turmeric, as that is a natural anti-inflammatory. I am frustrated and confused. I understand that this is an autoimmune disorder and cases are increasing rapidly in developed countries. I have no family history of any type of Colitis and I have never smoked, which are both sometimes factors. Thank you so much for any insight or suggestions!

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Hello, hoping things are getting more managible for you. It sounds like you have been dealing with quite a bit. My 19 year old son was diagnosed today with UC. He will start his medication tomorrow but the exact name of it escapes me right now. I'm told he has a mild form but that this is also life-long for him. I'm hoping the medication will help him get back to his normal and or help him find a new normal. Is there anything you can suggest he tries or does?

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Hi! First of all, I am so sorry your son has UC. Yes it is a chronic condition, but there are several ways to treat it and some people do very well with first line treatment. I am assuming the doctor has prescribed mesalamine (some brand names are Lialda, Canasa, Asacol). These can be taken orally, rectally or both. If the UC is ulcerative proctitis, they usually start you with the mesalamine suppositories. Some people stay at that level and do well on these drugs for years! I started with proctitis but the UC continued to move up the lower intestine and became pancolitis. The oral mesalamine and suppositories worked well for me the first few months and I believe they would have continued to work well, but I developed drug induced pancreatitis and had to discontinue immediately. That's when things became worse quickly and it was a struggle and a learning curve to see what else would work.

I am hoping your son does well with the mesalamine! Next line would be steroids and they usually start you with budesonide, which is safer than prednisone, but either one is short term, just to calm things down; they are both available rectally too. I am currently on the biologic infusion, Entyvio, and that seems to be working well; however, I had started a plant based diet a week before starting the infusions and I am thrilled to report that things have been "normal" for almost 3 months! There has been NO bleeding, no diarrhea and bathroom visits have decreased from 12-15 daily to 2-3! I have also been maintaining weight (I had been losing a half pound a day!) Despite the science behind the biologic, my doctor strongly supports the plant based diet, and there is a lot of clinical evidence that it does indeed make a difference. If he starts out slowly, just eliminating dairy, and then meat… it may be less painful. I personally don't miss meat at all, but I do miss cheese and ice cream, but this new way of eating is a small price to pay after what I have been through. When my doctor told me a few months ago that the UC was fulminant, and recommended a colorectal surgeon, I was terrified.

So I would recommend that he try the mesalamine (I am assuming that's what he'll be taking). I hope and pray this will work for him and the UC will stay at this level!!! I am also taking the probiotic, VSL#3 (also recommended by my GI doc) twice a day. So, that, a plant based diet, and exercise are what I would advise, based on my experience. It is a horrible disease, but there is hope and there are many things out there that do work. Everyone is a little different in how they respond to different treatments. His doctor can monitor with labs (blood and stool) to check the inflammation markers and scope to check the mucosal lining, I wish you the very best of luck and hope I have answered some of your questions. Please don't hesitate to reach out if you have any other questions. It's amazing how much you learn when you have a condition like this, and you get to the point where you're not even embarrassed talking about poop. LOL
Good luck
Donna

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@cim37343

My husband has microscopic colitis which he could always control with large doses of pepto bismol. Recently however he has had a four week period of diarrhea that is not helped by pepto or even kaopectate. He decided to go off gluten to see if that would help. That has not helped. He has an appointment with a new GI doc tomorrow. I’m assuming he will offer another med that may help. Is anyone on a specific med for this condition that has helped?

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Follow up on my husbands collagenous colitis that no longer responded to pepto bismol. His doc said try Imodium. If it works just stick with that.

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Gastroenterologist diagnosed me with lymphocytic colitis. This was after my 3rd colonoscopy and special test to detect blood which did show up microscopically. I had gall bladder surgery 4 years ago and have had persistent diarrhea since surgery. Also have had dramatic loss of weight from 130 to 98 plus extreme weakness. Would appreciate any sharing of treatment or medication that helps deal with this problem. Petepat3234@yahoo.com

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Have you tried OTC Imodium. My husbands diarrhea subsided and hasn’t returned after three pills. Doc said if it works keep it up.

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@petepat3234

Gastroenterologist diagnosed me with lymphocytic colitis. This was after my 3rd colonoscopy and special test to detect blood which did show up microscopically. I had gall bladder surgery 4 years ago and have had persistent diarrhea since surgery. Also have had dramatic loss of weight from 130 to 98 plus extreme weakness. Would appreciate any sharing of treatment or medication that helps deal with this problem. Petepat3234@yahoo.com

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@petepat3234 – I was first diagnosed with collagenous colitis 10 years ago- out of the blue. None of the OTC meds did more than allowing me out of the house for a couple of hours. At one point it was so bad I could not leave my room/ bathroom. The GI doctor then treated me with methotrexate. I was also extremely weak from loss of fluids and electrolytes. I drank Gatorade and Pedialyte. The illness returned after a year or two- waxing and waning, leaving me very exhausted and weak at times. Budesonide took the edge off symptoms and prednisone made me feel normal- until I stopped it. Finally, 4 years ago, I was put on immunosuppressive Imuran for several months. It was rough but it worked.
I ended up with normal function, except IBS, but feeling extremely exhausted. In my mind it is the result of chronic”acute” stress for years when there was pain/ discomfort every day – like being burned out.

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I was diagnosed with microscopic lymphatic cystosis after 3rd colonoscopy. This occurred about 3yrs after gall bladder surgery. Still have diarrhea, 3 to 4 times a day.

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@petepat3234 – it sounds like you still have the colitis inflammation- especially if you feel weak too. Has your doctor discussed any immunosuppressive medications?

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@astaingegerdm

@petepat3234 – I was first diagnosed with collagenous colitis 10 years ago- out of the blue. None of the OTC meds did more than allowing me out of the house for a couple of hours. At one point it was so bad I could not leave my room/ bathroom. The GI doctor then treated me with methotrexate. I was also extremely weak from loss of fluids and electrolytes. I drank Gatorade and Pedialyte. The illness returned after a year or two- waxing and waning, leaving me very exhausted and weak at times. Budesonide took the edge off symptoms and prednisone made me feel normal- until I stopped it. Finally, 4 years ago, I was put on immunosuppressive Imuran for several months. It was rough but it worked.
I ended up with normal function, except IBS, but feeling extremely exhausted. In my mind it is the result of chronic”acute” stress for years when there was pain/ discomfort every day – like being burned out.

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I've been wondering about the immuno-suppressive medications. I took budesondide for 2 or 3 years until my skin was so thin it would just peel off! I've gone off it, but the usual "col" what-ever-they're-called pills and powder just DON'T do the job. I've had this for about 20 years. I've had cancer twice, which is the reason I haven't done one of the new ones, but I'm wondering if you can take it anyway and just be closely monitored. I'd like to hear from anyone who might know about this conundrum. Thanks.

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@dval

Hi! First of all, I am so sorry your son has UC. Yes it is a chronic condition, but there are several ways to treat it and some people do very well with first line treatment. I am assuming the doctor has prescribed mesalamine (some brand names are Lialda, Canasa, Asacol). These can be taken orally, rectally or both. If the UC is ulcerative proctitis, they usually start you with the mesalamine suppositories. Some people stay at that level and do well on these drugs for years! I started with proctitis but the UC continued to move up the lower intestine and became pancolitis. The oral mesalamine and suppositories worked well for me the first few months and I believe they would have continued to work well, but I developed drug induced pancreatitis and had to discontinue immediately. That's when things became worse quickly and it was a struggle and a learning curve to see what else would work.

I am hoping your son does well with the mesalamine! Next line would be steroids and they usually start you with budesonide, which is safer than prednisone, but either one is short term, just to calm things down; they are both available rectally too. I am currently on the biologic infusion, Entyvio, and that seems to be working well; however, I had started a plant based diet a week before starting the infusions and I am thrilled to report that things have been "normal" for almost 3 months! There has been NO bleeding, no diarrhea and bathroom visits have decreased from 12-15 daily to 2-3! I have also been maintaining weight (I had been losing a half pound a day!) Despite the science behind the biologic, my doctor strongly supports the plant based diet, and there is a lot of clinical evidence that it does indeed make a difference. If he starts out slowly, just eliminating dairy, and then meat… it may be less painful. I personally don't miss meat at all, but I do miss cheese and ice cream, but this new way of eating is a small price to pay after what I have been through. When my doctor told me a few months ago that the UC was fulminant, and recommended a colorectal surgeon, I was terrified.

So I would recommend that he try the mesalamine (I am assuming that's what he'll be taking). I hope and pray this will work for him and the UC will stay at this level!!! I am also taking the probiotic, VSL#3 (also recommended by my GI doc) twice a day. So, that, a plant based diet, and exercise are what I would advise, based on my experience. It is a horrible disease, but there is hope and there are many things out there that do work. Everyone is a little different in how they respond to different treatments. His doctor can monitor with labs (blood and stool) to check the inflammation markers and scope to check the mucosal lining, I wish you the very best of luck and hope I have answered some of your questions. Please don't hesitate to reach out if you have any other questions. It's amazing how much you learn when you have a condition like this, and you get to the point where you're not even embarrassed talking about poop. LOL
Good luck
Donna

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My GI docs (there have been several) have just seemed to try, over the years, different meds, sort of trial and error, but most don't help or have nasty side effects (budesonide). Does anyone think I'd do better to go to the Mayo clinic and get a full work-up, where they are absolutely up on the latest drugs, clinical trials, etc.? I'd be willing to go to Rochester (from Seattle) if it'll be worth it. After 20 years of this, I feel like I'm just giving up life altogether and not even trying to actually GO anywhere. I see most of you agree to how depressing it is. I would go there, also, to get more information on the plant-based diet, etc.

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