Wow! Am I thankful that I found this site!
I starting having ExPloSive diarrhea back in June... went through lots of tests & 3 docs before I was sent to a GI specialist, waited another month for an upper and lower scope, waited another month for results... June quickly turned into October when I was DX with MLC. I've now been on Uceris for 11 weeks, after starting it - it immediately stopped the D. I had more energy and was on cloud 9!! After a LONG, No energy summer I thought I hit the jackpot! The only diet advice that I got initially was follow a BRAT diet - Bananas, Rice, Applesauce & Toast. (of course I cut the toast out pretty quick!) With my own research, I found that GF was probably beneficial, along with no artificial sweeteners, & no caffeine. I also stopped smoking. (Yay!)
And, after reading many posts here - I'm thinking that Dairy needs to go (I do currently supplement with Lactase when I have dairy) and Soy needs to go too, oh, and eggs. Here I thought adding Lactase and using Soy milk was being proactive.
In recent weeks, I started blaming Uceris for my abdominal and low back pain, water retention, my knees feel like they fill up with fluid and it is cumbersome to walk, I continue to have bad abdominal distention, & gas pain (unable to move gas). My GI doctor doesn't seem to think these are from the medication. I didn't know what else it could be...
I guess my next step is to add DF, SF & no eggs to the list and see if that helps. I know there is a lot of inflammation going on in my tummy, just bc my stools are controlled now, I know it isn't healthy in there. I'm in discussion with my GI doc about beginning to taper off the 9mg of Uceris. I have a feeling the D will return if I do taper, but I'm so miserable now that I felt like I needed to try something.
I guess following a stricter diet plan is what I need to try.
A lot of this is new to me, I'm very appreciative of all this information! Thank You!
Adding Vit D3 and Mg is also new information to me. I'll continue to research that. I do take a multivitamin, B12, Xyzal or Zyrtec daily. I have mixed feelings about Probiotics - it was recommended that I take one... sometimes I think it contributes to the gas / bloating. So, I take it about 3 days a week.
I do feel like I'm starting at square 1 again... but, at least I have a square to start. :)
Thank you,
Melissa
Imodium or diet or budenoside?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Hi Melissa,
Welcome to the forum. You seem to to be a quick learner and you're well on your way to recovery. Incidentally, while sugars such as lactose are a problem, the main problem with all dairy products is the casein, which is a protein. Those of us who are sensitive to it produce antibodies against it so it is highly inflammatory for us, similar to gluten.
Medications can suppress the inflammation, but they can't stop it from being regenerated with each meal. Only diet changes to avoid the problem foods can actually stop the inflammation and allow the intestines to heal.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the forum. You seem to to be a quick learner and you're well on your way to recovery. Incidentally, while sugars such as lactose are a problem, the main problem with all dairy products is the casein, which is a protein. Those of us who are sensitive to it produce antibodies against it so it is highly inflammatory for us, similar to gluten.
Medications can suppress the inflammation, but they can't stop it from being regenerated with each meal. Only diet changes to avoid the problem foods can actually stop the inflammation and allow the intestines to heal.
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.
Hello Again!
I'm so happy to report that I did taper off of the medication. I started on 9mg of Uceris for 12 long weeks, went to 6mg of budesonide for 3 weeks, and then 3mg for 3 weeks. I had complaints of water retention, weight gain, leg pain so bad that I had doubts that I could get up and walk in the morning - otherwise, I'm a healthy, happy 44 year old. That wasn't like me. I had an office visit with my NP, who got my GI doc on the phone and he was dismissive of my symptoms. Later my NP shared that 2 other women complained of the same systemic effects while on the same meds. The NP consulted with another GI doc in the office who did say that there was a 10% chance of systemic effects from the Uceris / Budesonide. SO, all in all - explosive diarrhea is gone, side effects were rotten. Wanted to share to let anyone else on these meds know they aren't crazy, even if your doctor thinks your are. :) I'm an RN and had my notebook full of notes, my I/O's documented, pain ratings, bowl movements, food diary, etc & was still dismissed...
I'm GF, soy free, try my best at Dairy Free, rarely eat anything with eggs. Mainly eat cream of rice with truvia and rice milk in the morning, or cornflakes and almond milk, antibiotic free boiled chicken & jasmine rice, homemade vegetable beef stew (no barley), chicken / beef bone broth & rice, apple sauce, just very bland, home made meals.
I take a Vegan, GF, Soy Free multi vitamin, 5000 IU Non fish liver source GF Vit D3, 250 mg Chelated MG GF. and 50mg of Zinc (during flu season) and I take a Xyzal at night & a Zyrtec in the AM.
My abdominal pain that ran up both sides of my abdomen and across the top of my abdomen & increased with inspiration is 100% gone. And, it was 100% gone with I stopped the budesonide. Coincidence? Doubt it.
I do continue to have pasty / loose stools daily. But, it's not explosive and not uncontrolled. I can live with that, I guess.
Question: What I can't seem to wrap my brain around... I'm still having issues with significant abdominal bloating and gas. This gas isn't moving. Rarely moving. I try eating Gas-x chews, pills, activated charcoal, phazyme pills. I walk my dog at least a mile every day. I'm active. Any ideas? Why isn't it deflating? lol.
Thanks for taking the time to muddle through my rant. Feels good to vent every now and then. :)
I would certainly appreciate any insight.
Take Care!
I'm so happy to report that I did taper off of the medication. I started on 9mg of Uceris for 12 long weeks, went to 6mg of budesonide for 3 weeks, and then 3mg for 3 weeks. I had complaints of water retention, weight gain, leg pain so bad that I had doubts that I could get up and walk in the morning - otherwise, I'm a healthy, happy 44 year old. That wasn't like me. I had an office visit with my NP, who got my GI doc on the phone and he was dismissive of my symptoms. Later my NP shared that 2 other women complained of the same systemic effects while on the same meds. The NP consulted with another GI doc in the office who did say that there was a 10% chance of systemic effects from the Uceris / Budesonide. SO, all in all - explosive diarrhea is gone, side effects were rotten. Wanted to share to let anyone else on these meds know they aren't crazy, even if your doctor thinks your are. :) I'm an RN and had my notebook full of notes, my I/O's documented, pain ratings, bowl movements, food diary, etc & was still dismissed...
I'm GF, soy free, try my best at Dairy Free, rarely eat anything with eggs. Mainly eat cream of rice with truvia and rice milk in the morning, or cornflakes and almond milk, antibiotic free boiled chicken & jasmine rice, homemade vegetable beef stew (no barley), chicken / beef bone broth & rice, apple sauce, just very bland, home made meals.
I take a Vegan, GF, Soy Free multi vitamin, 5000 IU Non fish liver source GF Vit D3, 250 mg Chelated MG GF. and 50mg of Zinc (during flu season) and I take a Xyzal at night & a Zyrtec in the AM.
My abdominal pain that ran up both sides of my abdomen and across the top of my abdomen & increased with inspiration is 100% gone. And, it was 100% gone with I stopped the budesonide. Coincidence? Doubt it.
I do continue to have pasty / loose stools daily. But, it's not explosive and not uncontrolled. I can live with that, I guess.
Question: What I can't seem to wrap my brain around... I'm still having issues with significant abdominal bloating and gas. This gas isn't moving. Rarely moving. I try eating Gas-x chews, pills, activated charcoal, phazyme pills. I walk my dog at least a mile every day. I'm active. Any ideas? Why isn't it deflating? lol.
Thanks for taking the time to muddle through my rant. Feels good to vent every now and then. :)
I would certainly appreciate any insight.
Take Care!
Hi Melissa,
Thanks for posting the update. There are 3 possibilities for the gas and bloating.
1. Gluten may be sneaking into your diet.
2. You may be sensitive to dairy products.
3. You may be low on stomach acid — bloating and gas are common symptoms of insufficient stomach acid.
I hope this is helpful.
Tex
Thanks for posting the update. There are 3 possibilities for the gas and bloating.
1. Gluten may be sneaking into your diet.
2. You may be sensitive to dairy products.
3. You may be low on stomach acid — bloating and gas are common symptoms of insufficient stomach acid.
I hope this is helpful.
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.
Hi Melissa,
Two theories on the gas:
1. My experience early on with MC was that almost everything caused gas. ie. it is part of the early on disease. 3-4 months down the road I had less gas. This is just my experience and theory. As time went on the gas went away.
2. Your diet looks pretty safe. I am in remission now but things like GF corn flakes still cause me gas. I think it is all of the ingredients.
3. Gluten contamination definitely causes gas.
Try to track things with a food log.
Two theories on the gas:
1. My experience early on with MC was that almost everything caused gas. ie. it is part of the early on disease. 3-4 months down the road I had less gas. This is just my experience and theory. As time went on the gas went away.
2. Your diet looks pretty safe. I am in remission now but things like GF corn flakes still cause me gas. I think it is all of the ingredients.
3. Gluten contamination definitely causes gas.
Try to track things with a food log.
Tex, you are a wealth of knowledge! Thank you!
I still consider myself relatively new to the MC roller coaster ride.... it's been 10 months and I've kept a food log and BM log, pain log, etc... been very restrictive with my diet and slowly added things in...taken away... added in...taken away... waited... I'm also caffeine free, most days. I know gluten can be sneaky - I gave away all my gluten months ago. I've been very strict... the bloating never went away. I'd measure my belly first thing in the morning and right before bed. Sometimes it would expand up to 4" in a day...and, it would already be very bloated when the day started. And, active bowel sounds all around... so, I've just thought it was odd that this gas wasn't moving OUT. Not up. Not down. Shouldn't I just go BOOM?! ha ha ha
So, of course I Googled low stomach acid and something to try is adding a little Apple Cider vinegar to your diet. May give that a whirl.
Brandy, thanks for your info on the corn flakes... I've tried corn chex, rice chex, corn flakes... maybe I need to think "outside the box" and find an alternative to cold cereal. :) Thank you!
Take Care All!
I still consider myself relatively new to the MC roller coaster ride.... it's been 10 months and I've kept a food log and BM log, pain log, etc... been very restrictive with my diet and slowly added things in...taken away... added in...taken away... waited... I'm also caffeine free, most days. I know gluten can be sneaky - I gave away all my gluten months ago. I've been very strict... the bloating never went away. I'd measure my belly first thing in the morning and right before bed. Sometimes it would expand up to 4" in a day...and, it would already be very bloated when the day started. And, active bowel sounds all around... so, I've just thought it was odd that this gas wasn't moving OUT. Not up. Not down. Shouldn't I just go BOOM?! ha ha ha
So, of course I Googled low stomach acid and something to try is adding a little Apple Cider vinegar to your diet. May give that a whirl.
Brandy, thanks for your info on the corn flakes... I've tried corn chex, rice chex, corn flakes... maybe I need to think "outside the box" and find an alternative to cold cereal. :) Thank you!
Take Care All!
Melissa,
Brandy's theory about reacting to "everything" early on is right on target. The immune system continues to produce antibodies to gluten for a while (a few months, at least) after we remove gluten from our diet. So it certainly seems as though we are reacting to almost everything. After the gluten antibodies (anti-gliadin antibodies) recede somewhat the symptoms will decrease and we will be able to notice other food sensitivities easier.
Some people find that apple cider vinegar helps, but looking at it realistically, apple cider vinegar only has a pH of about 4.5 (or is it 5.5? — I forget). Normal stomach pH when preparing to digest food is in the 1.2–2.0 range — much, much more acidic. You have to supplement with a proper dose of betaine HCL in order to get gastric acidity down to that level. Here's a link to a recent/current discussion:
Low Stomach Acid
Tex
Brandy's theory about reacting to "everything" early on is right on target. The immune system continues to produce antibodies to gluten for a while (a few months, at least) after we remove gluten from our diet. So it certainly seems as though we are reacting to almost everything. After the gluten antibodies (anti-gliadin antibodies) recede somewhat the symptoms will decrease and we will be able to notice other food sensitivities easier.
Some people find that apple cider vinegar helps, but looking at it realistically, apple cider vinegar only has a pH of about 4.5 (or is it 5.5? — I forget). Normal stomach pH when preparing to digest food is in the 1.2–2.0 range — much, much more acidic. You have to supplement with a proper dose of betaine HCL in order to get gastric acidity down to that level. Here's a link to a recent/current discussion:
Low Stomach Acid
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.
I wasn't sure where to put my newly discovered info, but wanted to share. I finally made a "me commitment" and have been dedicating some time to researching MC again. I've got a good start into Understanding Microscopic Colitis. While reading the (your-Tex's) book, I was led to an article, "Drug Exposure and the Risk of Microscopic Colitis: A Critical Update" (Lucendo, 2017). I'd been so confused on what could have led to the development of my MC... until I read the article. There is a lengthy list of common OTC medications, such as ibuprofen & antacid meds. I was never much of a user of these meds at all, so I had been so perplexed... & I wasn't on any prescription medications at the time... Then I saw the medication, Topiramate. I had never seen this mediation identified before, and I had my ahh-haa moment. Sadly, knowing doesn't really change anything, other than the mystery. I wasn't actively taking the medication when my symptoms started, so I had never associated that medication with my MC. But, so far that is the only thing I've seen that makes sense...
I still battle gas and bloating, but I'm thankful that I rarely have the D....
I feel like I need to start over with a recovery diet, since I recently had a week long business meeting out of town, where food was catered in (EEEKK!)... So... needless to say, I've been experiencing some misery from straying way off my diet.
Best wishes to everyone for Happy New Year! :)
I still battle gas and bloating, but I'm thankful that I rarely have the D....
I feel like I need to start over with a recovery diet, since I recently had a week long business meeting out of town, where food was catered in (EEEKK!)... So... needless to say, I've been experiencing some misery from straying way off my diet.
Best wishes to everyone for Happy New Year! :)
Melissa,
Thanks for the update. You're probably right about the med. Many meds set us up for MC but if we're no longer taking them when the MC symptoms finally begin, we may not associate them with the disease. Your remaining symptoms should fade away after you tighten your diet again.
Happy New Year to you also.
Tex
Thanks for the update. You're probably right about the med. Many meds set us up for MC but if we're no longer taking them when the MC symptoms finally begin, we may not associate them with the disease. Your remaining symptoms should fade away after you tighten your diet again.
Happy New Year to you also.
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.
I thought this was interesting... I talked to my mother, it turns out that she and I were both on the same medication, Topiramate 100mg.
One of the off label uses for Topiramate used in conjunction with phentermine, promotes weight loss. We were on the same medication, at the same time...
She had no issues.
Thanks again for all of your help and support,
Melissa
One of the off label uses for Topiramate used in conjunction with phentermine, promotes weight loss. We were on the same medication, at the same time...
She had no issues.
Thanks again for all of your help and support,
Melissa
