Hello All,
Love this informative board and have already decided to get the tests from Doc Finer asap. Had sudden onset of D about 6 months ago. Kept thinking it would go away but finally saw local gastro and she said I'm sure it is MC. Had to have colonoscopy Thursday for biopsies to confirm and it was confirmed yesterday. First RX yesterday was XIFAXAN and Target said my Medicare part D plan turned it down but it's a strong antibiotic and I wouldn't have taken without discussing anyway. (will call her Monday). But then they called to say Budesonide was prescribed. Huh? from an antibiotic to steroid and i have no small intestine overgrowth. Plus I've had terrible experiences with steroids in the past so i want to avoid at all costs even tho systemic is only 18% penetration supposedly. In the meantime, I've been taking 3 lomotil gneric in the am and 3 at night for the past 3 weeks and everything under control - no 7am till noon in biffy + other times and sometimes during the night. So my symptoms are managed nicely with 6 per day and no side effects. I want to continue this regime and wait until I get my Finer test results before taking any other meds. Would appreciate your thoughts. (oh or maybe do the pepto bismal thing since there would be no side effects and Finer seems to think that course
can be effective for many.
Just Diagnosed with MC (the Collagenous kind) yesterday
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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erinforever
- Posts: 4
- Joined: Sat Oct 06, 2012 5:25 pm
- Location: Minneapolis
Hi Erin,
Welcome to the board. It sounds as though your GI doc is on the ball, and reasonably familiar with the disease. You seem to have done your homework, and I see nothing wrong with your plan. The EnteroLab tests typically save a lot of time and effort, since they can eliminate much of the trial and error testing that many of us used to track down our food sensitivities. And if you can control your symptoms adequately without the use of any prescription drugs, I see no reason to use drugs while you are waiting for your EnteroLab test results. (FWIW, I didn't use any drugs either, during my recovery.)
Xifaxan is an expensive antibiotic, and though quite a few members here have tried one or more treatment regimens with it, so far no one seems to have enjoyed any lasting benefits from using it. The drug company reps must do a good job of promoting that antibiotic, because a fair number of GI specialists are enthusiastic about using it for gastrointestinal issues that involve D. It's a shame it doesn't seem to deliver the relief that the test trials promise.
Contrary to the test trial results for the Pepto treatment, a small to moderate percentage of members here who have tried it, have experienced neurological effects that caused them to discontinue using it. For those who can tolerate it, though, it's a reasonably safe and effective way to speed up the healing process (as long as the GF diet is carefully followed during and after the treatment). The Pepto treatment is certainly much safer than using a corticosteroid or an immune system suppressant to treat the disease. As with most drug treatments for MC, though, without the necessary diet changes, most patients will relapse a few days to a few weeks after the Pepto treatment is ended.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. It sounds as though your GI doc is on the ball, and reasonably familiar with the disease. You seem to have done your homework, and I see nothing wrong with your plan. The EnteroLab tests typically save a lot of time and effort, since they can eliminate much of the trial and error testing that many of us used to track down our food sensitivities. And if you can control your symptoms adequately without the use of any prescription drugs, I see no reason to use drugs while you are waiting for your EnteroLab test results. (FWIW, I didn't use any drugs either, during my recovery.)
Xifaxan is an expensive antibiotic, and though quite a few members here have tried one or more treatment regimens with it, so far no one seems to have enjoyed any lasting benefits from using it. The drug company reps must do a good job of promoting that antibiotic, because a fair number of GI specialists are enthusiastic about using it for gastrointestinal issues that involve D. It's a shame it doesn't seem to deliver the relief that the test trials promise.
Contrary to the test trial results for the Pepto treatment, a small to moderate percentage of members here who have tried it, have experienced neurological effects that caused them to discontinue using it. For those who can tolerate it, though, it's a reasonably safe and effective way to speed up the healing process (as long as the GF diet is carefully followed during and after the treatment). The Pepto treatment is certainly much safer than using a corticosteroid or an immune system suppressant to treat the disease. As with most drug treatments for MC, though, without the necessary diet changes, most patients will relapse a few days to a few weeks after the Pepto treatment is ended.
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.
Hi Erin,
Glad to hear the Lomotil is working for you. My Pepto regimen is working well for me and I'm currently weaning off. However, some get side effects. I've been very lucky and have had none. My doctor just recently told me that Pepto is more of a healing drug and not a drug like Imodium that will only get rid of the symptoms, so hoping that the Pepto has helped me heal a lot. Of course I've been GF/DF and will have to stay that way forever.
Glad you are having the labs done. I keep putting it off.....need to get with it.
Good luck,
Terri
Glad to hear the Lomotil is working for you. My Pepto regimen is working well for me and I'm currently weaning off. However, some get side effects. I've been very lucky and have had none. My doctor just recently told me that Pepto is more of a healing drug and not a drug like Imodium that will only get rid of the symptoms, so hoping that the Pepto has helped me heal a lot. Of course I've been GF/DF and will have to stay that way forever.
Glad you are having the labs done. I keep putting it off.....need to get with it.
Good luck,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Welcome Erin. It's great that you are getting the Enterolab tests. That will help guide you a lot. If there are some foods that obviously give you discomfort or symptoms, you probably should take them out of your diet now. For me, dairy was a biggie.
If you can do this without heavy duty drugs, that's great. Just know that the Budesonide worked wonders for some of us ( within a couple of days for me) , so if you don't get the results you want down the road, it is an option. I had no side effects and was able to wean off after 6 months. Everyone is different.
Read as much as you can on this forum. It's a wealth of information.
Keep us posted on your progress. Hears to healing quickly :)
Leah
If you can do this without heavy duty drugs, that's great. Just know that the Budesonide worked wonders for some of us ( within a couple of days for me) , so if you don't get the results you want down the road, it is an option. I had no side effects and was able to wean off after 6 months. Everyone is different.
Read as much as you can on this forum. It's a wealth of information.
Keep us posted on your progress. Hears to healing quickly :)
Leah
Hi Erin,
Welcome! I had a serious reaction to Xifaxan. Suggest if you try it try it one pill at home on weekend. I took one and only pill when I was out at Bentos and had white rice with a friend. An hour later driving home I had very serious reaction. It caused blood in stool and severe GI cramps.
Brandy
Welcome! I had a serious reaction to Xifaxan. Suggest if you try it try it one pill at home on weekend. I took one and only pill when I was out at Bentos and had white rice with a friend. An hour later driving home I had very serious reaction. It caused blood in stool and severe GI cramps.
Brandy
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erinforever
- Posts: 4
- Joined: Sat Oct 06, 2012 5:25 pm
- Location: Minneapolis
New to MC - the plot thickens
Thank you all for your tips and kind welcome to the board. I've started the Budesonide - worth a try. Turns out I also have Small Intestine Bacterial Overgrowth! What a revolting development!! So I've been told to up my probiotics especially Bifantus. Guess I'll realy have to be careful
about my diet now. I was disappointed insurance won't pay for my Enterolab tests so I'll have to try to get it done early in the new year and
watch my carbs very closely. I'll give up my one daily slice of Ezekial sprouted grain bread I love so much :(
about my diet now. I was disappointed insurance won't pay for my Enterolab tests so I'll have to try to get it done early in the new year and
watch my carbs very closely. I'll give up my one daily slice of Ezekial sprouted grain bread I love so much :(
How do they test you for SIBO? Do you have to take an antibiotic for that? Doctor didn't even mention that to me. I've wondered if I've got it. From what I hear, you need to go grain-free with that? Just something I read. Have you tried the Paleo bread? I'm afraid to as it has Psylium (sp) fiber in it and I'm afraid that the 5 grams of fiber in one slice may be too much. If you haven't tried it and do, let me know how it affects you.
Good luck on the Entocort.
Terri
Good luck on the Entocort.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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erinforever
- Posts: 4
- Joined: Sat Oct 06, 2012 5:25 pm
- Location: Minneapolis
Hi Terri
I took the glucose breath test which is a 3 hour drink glucose then breath into tubes every 20 minutes.
Just purchased my Align Bifantis infantis @ walgreens (the one we have the most of when we are born:)
which is recommended. There's a partiular no/low carb high fat diet to follow but I haven't gotten all
the specifics. I'll also take an enteric (edible) coated peppermint oil which doesn't open till its in the small
intestine and then will be killing off bacteria. We'll see. They also wanted me to take Xifaxan but I am passing
on that. I'll look in to the Paleo. So much to learn! I'm grateful for all the information available on this board
(which luckily i just stumbled across!!!)
I took the glucose breath test which is a 3 hour drink glucose then breath into tubes every 20 minutes.
Just purchased my Align Bifantis infantis @ walgreens (the one we have the most of when we are born:)
which is recommended. There's a partiular no/low carb high fat diet to follow but I haven't gotten all
the specifics. I'll also take an enteric (edible) coated peppermint oil which doesn't open till its in the small
intestine and then will be killing off bacteria. We'll see. They also wanted me to take Xifaxan but I am passing
on that. I'll look in to the Paleo. So much to learn! I'm grateful for all the information available on this board
(which luckily i just stumbled across!!!)
Maybe I'll try that Align infantis. I have read about it but when it comes to Probiotics, I haven't a clue on where to start. I wonder why my doctor didn't test me for that.....with Celiac disease I thought he would have. Let us know how it works for you. Can you let me know more about the diet when they give you more specifics? Just curious. Interesting about the Peppermint oil. Learn something new every day on this site.
Keep us updated,
Terri
Keep us updated,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.