I have followed this wonderful website since 2009. I began this journey in 2009 and was diagnosed late 2010 with MC. I was given several different medications but Entorcort was my life saver. In 2011 IBS was added. I also have Hashimoto disease , diverticulosis and Positve ANA. I was given Glycopyrrolate for the IBS.I have followed many of your dietary suggestions and maintain a restricted diet. I tried to d/c the Glycoprolate but found the gas and bloating returned plus a constant runny noise.
I have one concern about , if I have a flare up. My current drug plan allows Uceris. What are your experiences with it and how do you titrate .Should I try to insist on Entocort?
My second concern is my son's upcoming appointment with a GI doctor. He has had IC for 3 years but currently he is having bladder problems and constipation problems.H e currently self catheterizes. What questions and test would you recommend. My hope is he sees a physican , it seems the new trend involves mainly PA, FNP and NP's. My PCP is leaving and it is just about impossible to get another actual doctor.
We live in the state of NY so I have not been able to do the testing from Enterolab.
Fyi the last time I saw my GI and asked about needing Entocort for a flare up he said he would recommend 5 ASA drug.H e also asked me if I was still on a gluten free diet!
Again I really appreciate your group and I don't know why I took so long!
Newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Zoey,
Welcome to our Internet family. It's good to see you finally posting, and I'm glad that you have been able to maintain control of your symptoms.
It's difficult to persuade some doctors to accept constipation as a possible symptom of MC, but quite a few of us here have constipation as a common MC sympton (rather than diarrhea). And MC can cause the same bladder issues as IC (the pattern of inflammation in the bladder is almost exactly the same as the inflammation in the intestines, namely T-cell-based inflammation). Hopefully, if your son's doctor does a colonoscopy exam he will take biopsies in order to rule out (or confirm) the presence of MC. IOW, there is a possibility that MC is the cause of your son's IC, so that's why I believe that MC should be ruled out..
Uceris seems to work satisfactorily for many MC patients. Unfortunately, as you point out, there is no practical way to taper the dose, but that doesn't seem to be an obstacle in most cases.
If you would like to discontinue using Glycopyrrolate (which might be a good idea because the long-term use of anticholinergics has been shown to be associated with Alzheimer's disease and other types of dementia), one way to do that might be by using a simple OTC antihistamine (such as Zyrtec, Allegra, or Claritin RediTabs) as you wean off the Glycopyrrolate. Regular Claritin contains lactose, so most of us avid it. Anticholinergics and antihistamines are 2 different classes of medications, but there is a reasonably good chance that this plan might work.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. It's good to see you finally posting, and I'm glad that you have been able to maintain control of your symptoms.
It's difficult to persuade some doctors to accept constipation as a possible symptom of MC, but quite a few of us here have constipation as a common MC sympton (rather than diarrhea). And MC can cause the same bladder issues as IC (the pattern of inflammation in the bladder is almost exactly the same as the inflammation in the intestines, namely T-cell-based inflammation). Hopefully, if your son's doctor does a colonoscopy exam he will take biopsies in order to rule out (or confirm) the presence of MC. IOW, there is a possibility that MC is the cause of your son's IC, so that's why I believe that MC should be ruled out..
Uceris seems to work satisfactorily for many MC patients. Unfortunately, as you point out, there is no practical way to taper the dose, but that doesn't seem to be an obstacle in most cases.
If you would like to discontinue using Glycopyrrolate (which might be a good idea because the long-term use of anticholinergics has been shown to be associated with Alzheimer's disease and other types of dementia), one way to do that might be by using a simple OTC antihistamine (such as Zyrtec, Allegra, or Claritin RediTabs) as you wean off the Glycopyrrolate. Regular Claritin contains lactose, so most of us avid it. Anticholinergics and antihistamines are 2 different classes of medications, but there is a reasonably good chance that this plan might work.
Again, welcome aboard and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Joey
welcome to posting, but you dont need the welcome to MC world after 5 years or so of reading...
I agree with Tex, look at OTC antihistamines, any high histamine food/activities...
The other aspect is, how is your Vit D3 level? and are you supplementing Vit D3...
welcome to posting, but you dont need the welcome to MC world after 5 years or so of reading...
I agree with Tex, look at OTC antihistamines, any high histamine food/activities...
The other aspect is, how is your Vit D3 level? and are you supplementing Vit D3...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Zoey244
Just wanted to chime in with my welcome and experience with Uceris. I took it for 2 months after my dx. It worked from the very first dose. When I stopped I didn't taper, just stopped, and everything was fine. I control my symptoms with diet and OTC meds. I take Zyrtec in the morning, Benedryl at bedtime and Zantec before dinner. I have found antihistamines to work for me as my nasal allergies seem connected to my digestive issues (I refer to this as mucous from both ends).
My GI told me he has several patients that cycle on and off Uceris as needed. It always makes me feel great and energetic, but also has side effects, hot flashes, insomnia. (Weight gain and constipation may not be an unwanted side effect)
I get off it as much as I can, my husband has cataracts caused by prednisone. I already have osteo and it causes bone loss.
As with anything you need to weigh the pros and cons. Each of us have our own journey.
I am currently on Uceris because I am going on a cruise 11-16th and will not have to worry so much about what's in my food. I can just basically eat meat and well cooked veggies and be ok.
Just wanted to chime in with my welcome and experience with Uceris. I took it for 2 months after my dx. It worked from the very first dose. When I stopped I didn't taper, just stopped, and everything was fine. I control my symptoms with diet and OTC meds. I take Zyrtec in the morning, Benedryl at bedtime and Zantec before dinner. I have found antihistamines to work for me as my nasal allergies seem connected to my digestive issues (I refer to this as mucous from both ends).
My GI told me he has several patients that cycle on and off Uceris as needed. It always makes me feel great and energetic, but also has side effects, hot flashes, insomnia. (Weight gain and constipation may not be an unwanted side effect)
I get off it as much as I can, my husband has cataracts caused by prednisone. I already have osteo and it causes bone loss.
As with anything you need to weigh the pros and cons. Each of us have our own journey.
I am currently on Uceris because I am going on a cruise 11-16th and will not have to worry so much about what's in my food. I can just basically eat meat and well cooked veggies and be ok.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn