Hi, I've been reading this board and it has been helpful in gathering information. I was just diagnosed with CC after having watery D since August 2017. Back then I was prescribed an antibiotic for a UTI, then weeks later has looser stools. Since I was going on a trip, my dr. then prescribed Flagyl (another antibiotic) to take in case D got worse. Well, as my usual situation - upon first 3-4 days of international travel, I wasn't going at all. Since I've been constipated before, I took milk of magnesia (recommended dose). I had bad D the next day. Over my trip I had D most days. Once I even had what I thought was passing gas - but it wasn't. Since then I have very loose bm in the morning. I've had a couple flares where D is more frequent and even 2-3 times had night time leakage. This scared me so I went for colonoscopy and they diagnosed CC. So I just started 3 month regimen of Budesonide tapering from 3 pills a day, to 2, then to 1 pill a day for last month. My question: Since the majority of time I've had only watery D first thing in the morning - is it possible mine is a mild case? I read about people having to go 5-6 times a day and that only happened to me once during (what I know now) is called a flare up. I'm trying to eat healthy and will follow through with the Budesonide. I'm hoping it goes away and doesn't come back. Although, I know from reading that many people relapse.
thank you for reading and I appreciate your comments.
Diane
Just diagnosed with CC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Diane, and welcome!
We're sorry you had to find us, but you've come to the right place to get answers and support.
I reread your post and didn't see any mention of diet, and since diet is the only way to control this disease, what are you eating? Most all of us with colitis have to go gluten and dairy free, and some soy, among many other things. The Budesonide will help (I took it for almost a year tapering off very very slowly), but also changed my diet from the very beginning as nothing will stop the diarrhea if you don't change your eating habits.
Please read as much as you can and ask all the questions you have.
We're sorry you had to find us, but you've come to the right place to get answers and support.
I reread your post and didn't see any mention of diet, and since diet is the only way to control this disease, what are you eating? Most all of us with colitis have to go gluten and dairy free, and some soy, among many other things. The Budesonide will help (I took it for almost a year tapering off very very slowly), but also changed my diet from the very beginning as nothing will stop the diarrhea if you don't change your eating habits.
Please read as much as you can and ask all the questions you have.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Thank you so much for your encouragement. I considered myself to be a pretty healthy eater and have never had any food issues/allergies that I have been aware of. I pretty much was able to eat most foods. I chose to stay away from very rich foods as they don't feel good on my stomach. I also have no other symptoms really other than watery D once a day. That is my norm now the majority of time with two flares over the last 8 months. I have just started reading about gluten and will try to avoid obvious things, but I'm not severely modifying my diet to the extent other people are. Maybe I should though to prevent any relapse after tapering off Budesonide.
Just diagnosed with CC
I'm thinking of doing the Enterolab to see if they detect any sensitivities that may have developed due to what I think is antibiotic caused CC.
There's a link (I'll need to look for it) that tells how to get started. I truly believe you'll need to stay away from at least dairy and gluten. Most of us have done the Enterolabs to get some answers more quickly than cutting things out and adding them back in.
If you haven't changed your diet, you could be worse off when you go off the Budesonide. I really worked to be stable while weaning off of it very slowly.
If you haven't changed your diet, you could be worse off when you go off the Budesonide. I really worked to be stable while weaning off of it very slowly.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Welcome Diane,
Sorry you had such a rough go of your international trip.
With a Dx of CC at this time with minimal symptoms you are catching it early persay and I highly encourage ordering the Enterolab A1C1 to know exactly which proteins you are reacting to so you can avoid them immediately. If you do you ought to see results in the bathroom dept and you will be able to get a jump on the healing too.
You may be right in that you may not have to many protein/food sensitivities at this time, that would be a wonderful thing
But you do have a sensitivity to one or some of them.....also be prepared for a potential relapse of D symptoms after the Budesonide as your taper seems really quick. I can remember doing a 3 month Budesonide treatment in the early stages of this MC and it didn't do much for me as the GI didn't understand that I would need a much longer time period and a much slower taper in order for me to see any results. So long story short, I gave up the medicine route and strictly dove into the diet of things and that is how I have managed my symptoms (almost 3 years now).
Good luck....keep working out the kinks, ask anything
Sorry you had such a rough go of your international trip.
With a Dx of CC at this time with minimal symptoms you are catching it early persay and I highly encourage ordering the Enterolab A1C1 to know exactly which proteins you are reacting to so you can avoid them immediately. If you do you ought to see results in the bathroom dept and you will be able to get a jump on the healing too.
You may be right in that you may not have to many protein/food sensitivities at this time, that would be a wonderful thing
But you do have a sensitivity to one or some of them.....also be prepared for a potential relapse of D symptoms after the Budesonide as your taper seems really quick. I can remember doing a 3 month Budesonide treatment in the early stages of this MC and it didn't do much for me as the GI didn't understand that I would need a much longer time period and a much slower taper in order for me to see any results. So long story short, I gave up the medicine route and strictly dove into the diet of things and that is how I have managed my symptoms (almost 3 years now).Good luck....keep working out the kinks, ask anything
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Thanks, Erica. I don't want to have to go on steroids any more than necessary. I did sign up for the Entero Lab results as I can't imagine going through a strict diet adding items in day by day. Sometimes you don't know if you are reacting to something eaten recently or a day or two ago. So, I will find out if I also need to go GF and/or DF. And if I have to, then I have to. I don't like relying on meds but I have to admit that the Budesonide worked immediately for me
thanks again
Diane
thanks again
Diane
Hi Diane,
Welcome to the group. The budesonide will mask your food sensitivities if it works for you. It's best to take the EnteroLab tests within a few months of starting budesonide because if you should end up taking it longer than planned initially, it will eventually suppress your immune system and then the tests may give a few false negative results. The test results will make it much easier to develop a recovery diet.
If you keep a food/reaction journal when you start to wean off the budesonide it will help you to spot any food sensitivities that might not be covered by the EnteroLab tests or might be due to cross-contamination. Good luck with your recovery program.
Tex
Welcome to the group. The budesonide will mask your food sensitivities if it works for you. It's best to take the EnteroLab tests within a few months of starting budesonide because if you should end up taking it longer than planned initially, it will eventually suppress your immune system and then the tests may give a few false negative results. The test results will make it much easier to develop a recovery diet.
If you keep a food/reaction journal when you start to wean off the budesonide it will help you to spot any food sensitivities that might not be covered by the EnteroLab tests or might be due to cross-contamination. Good luck with your recovery program.
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 Tex and thank you!
I read somewhere on the board that I can take the Entero Lab tests as long as I have only recently started the budesonide.....I started the meds on 3/14 and today ordered my Entero tests. I've been keeping a food journal but that is a good point to be very mindful of keeping a journal as I'm weaning off the budesonide.
Thanks for your suggestion.
Diane
I read somewhere on the board that I can take the Entero Lab tests as long as I have only recently started the budesonide.....I started the meds on 3/14 and today ordered my Entero tests. I've been keeping a food journal but that is a good point to be very mindful of keeping a journal as I'm weaning off the budesonide.
Thanks for your suggestion.
Diane
Update on my CC
I just wanted to update you all. My last budesonide pill was on June 9. I took it for 3 months with a gradual taper. Since then I've been as normal as I could hope to be. Even better than before my 8 month bout with Collagenous colitis. I have always been a pretty healthy eater but I'm a little more careful about avoiding rich food. Other than that, I drink my one cup of coffee, have a cocktail twice a week, still have a little bit of cookie or even sometimes ice cream for a treat. I've had no relapse - so far. I know that it can come back but I will see how it all goes. I don't take any ibuprofen as precaution. Just wanted to update you on my journey.
Glad to hear you are maintaining Diane...actually that's the best any of us can do. If you can keep the proteins that seem to harm us at a dull roar you may just do ok for quite awhile. Remember though as the proteins build that affect our colitis we are harming the lining of our intestinal wall in tiny increments, if you ever get to a point that a flare happens that may be the curtain call for Gluten and Dairy.
Yesterday I thought I'd give quail eggs a try....well I don't think they like me too much...had to chuckle about that today because I haven't had the mad dash to the bathroom trips in quite a while.......I don't miss those!
Anyway....I'm smiling for you because feeling good is half the battle with a diagnosis of CC or LC
Keep it up!
Erica
Yesterday I thought I'd give quail eggs a try....well I don't think they like me too much...had to chuckle about that today because I haven't had the mad dash to the bathroom trips in quite a while.......I don't miss those!
Anyway....I'm smiling for you because feeling good is half the battle with a diagnosis of CC or LC
Keep it up!
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Erica, quail and chickens are closely related enough that hybrids have been made. The same is true of pheasants, turkeys, and guinea fowl. That's no doubt why the quail eggs didn't work for you. Ducks, on the other hand, are much more distantly related and that's why they can work for some people who are sensitive to chicken eggs.
Rosie
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Welcome and glad to hear you feel better and healed quickly. You have connected with an amazing group here that can help you if any further problems arise. I definitely have had to change my diet after CC diagnosis back in March with sudden flare and Tex's book (upper right hand corner) and this forum have helped immensely.
I have been on a very slow (2nd) Budesonide taper for several months - over half-way through.
I have not tried the Enterolab tests yet but am very interested as I continue sifting through safe foods.
My question to those who have more years/ experience with all of this-- regarding timing of Enterolab and steroids. Would the accuracy resume after I have tapered back off? I would like to explore this in a few months if it makes sense but am not interested in wasting money and time if meds will throw-off my test results.
Right now I believe eggs were a huge culprit/ trigger but I'm very curious regarding nuts, specifically almonds which I continue to tolerate (with caution).
Thanks to all for the insight and continued discussion!
I have been on a very slow (2nd) Budesonide taper for several months - over half-way through.
I have not tried the Enterolab tests yet but am very interested as I continue sifting through safe foods.
My question to those who have more years/ experience with all of this-- regarding timing of Enterolab and steroids. Would the accuracy resume after I have tapered back off? I would like to explore this in a few months if it makes sense but am not interested in wasting money and time if meds will throw-off my test results.
Right now I believe eggs were a huge culprit/ trigger but I'm very curious regarding nuts, specifically almonds which I continue to tolerate (with caution).
Thanks to all for the insight and continued discussion!
Jacqueline
Hi Jacqueline,
For most people who use Budesonide, it seems to take approximately two months after taking the last budesonide capsule for all of it's influence to wear off. Of course the degree of influence on antibody production (and therefore, EnteroLab test results) will depend not only on the period of time after stopping budesonide, but also on the final dose, the rate at which your body metabolizes budesonide, and how fast your immune system can return to normal afterward. The half-life of budesonide after activation is only a few hours, so it's the recovery of our own immune system capabilities (the ability to produce normal amounts of antibodies) that dominates the determination of when the test results will once again be accurate. For most of us, that seems to happen at about 2 months after taking the last budesonide capsule.
This has not been verified by any research project, but it's a "best guess" based on our accumulated experience.
Tex
For most people who use Budesonide, it seems to take approximately two months after taking the last budesonide capsule for all of it's influence to wear off. Of course the degree of influence on antibody production (and therefore, EnteroLab test results) will depend not only on the period of time after stopping budesonide, but also on the final dose, the rate at which your body metabolizes budesonide, and how fast your immune system can return to normal afterward. The half-life of budesonide after activation is only a few hours, so it's the recovery of our own immune system capabilities (the ability to produce normal amounts of antibodies) that dominates the determination of when the test results will once again be accurate. For most of us, that seems to happen at about 2 months after taking the last budesonide capsule.
This has not been verified by any research project, but it's a "best guess" based on our accumulated experience.
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.
