New to the Support Group

[butterfly]

I was so encouraged to find a website like this that provides so much individual support to colitis sufferers, in addition to incredibly useful information regarding treatment, medication and diet plans. Everything I have read I can relate to, and that in itself gives me hope and makes me realize that I am not alone in this!

I was diagnosed with collagenous colitis in November 2008 after nearly 4 months of diarrhea, associated abdominal discomfort and substantial weight loss of nearly 20 pounds. (I read that it is really quite rare, like 2 in 100,000 - could that be true?) When my gastroenterologist came back with the results of my colonoscopy and could provide a name for the condition that was plaguing my life, I was actually relieved - especially when he could prescribe a medication (Asacol) that might help. I had done some research on my own and thought I had IBS, but none of the IBS treatments I was trying had any effect on my symptoms. Being a "foodie", my diet had become so incredibly boring that my appetite had all but disappeared. After prescribing Asacol, my symptoms gradually went away, and although my BMs were never as "normal" as they used to be, my lifestyle returned to what it had been, and I could pretty much eat or drink all the things I had consumed before with no ill effects.

In June of this year, my mother passed away, and I think that's when my current flare-up began. Emotional stress seems to be a big trigger for me. My doctor gave me Lomotil with little to no effect (Immodium works better for me, but I only take one in the morning when I feel the need). Then he increased my Asacol dosage to 8 a day - I had gone down to 4 a day from 6 a day - and that didn't help either. Two weeks ago, he put me on Entocort, and I am hoping that does the trick. I seem to be getting a little bit better, but then again, it may be due more to paying close attention to the restrictions I have placed on my diet. From what I have read here, Entocort takes 2-4 weeks to kick in, and I have just been on it for 2 weeks (3 a day with breakfast). I've read that Pepto Bismol helps some people, too, but I tried the liquid and nearly gagged. (I can't believe I used to make my kids take it for upset stomachs!) I need to buy the tablets, I suppose, if I want to give PB a try.

I've read so many articles regarding CC and diet, and I have since eliminated coffee (boo-hoo), anything with caffeine, alcohol, dairy, as much fiber as possible, fresh fruits and vegetables, spicy foods, and probably more that I can remember at the moment. I do, however, try to have some Greek yogurt each day for the probiotic content, as I have read it is usually a dairy product that is tolerable. I seem to be able to eat meat (beef and chicken) and fish with no problem.My doctor says I should be able to eat canned vegetables, but I haven't tried them yet. I switched to soy milk, although I only have it occasionally with cereal and also have tried tofu ice cream. I don't really see any changes in my digestive system with eating soy, although I'm not consuming much of it, but I don't think I am intolerant to it.

I have read alot on the forum regarding the gluten-free diet. I hate the thought of implementing that, since it seems so complicated and restrictive, so I am putting it off for now. Since from the beginning I seem to tolerate eating regular white bread, pasta, cereal, oatmeal, etc., with no out-of-the ordinary ill effects, I am thinking gluten isn't a real problem for me. But, am I deluding myself? Does anyone have a stat on how many CC sufferers are gluten-intolerant?

Since my BMs are no longer just colored water exiting a fire hose, and I am down to 3-4 a day from 6 or more, and cramping/bloating is way better, I think I am improving. I still am losing weight, though - this flare-up has cost me 5 pounds so far, and I can't afford to lose much more. I never gained back all that I lost during the first go-around. The problem is that most of the foods that normally promote weight gain, I can't eat, and, once again, my appetite is sadly lacking!

Well, I've gone long enough for my first leap into the forum, but I will appreciate any suggestions anyone has regarding my experiences with this very annoying medical condition. I know it could be worse, and I'm probably whining here, but life pre-colitis was certainly more enjoyable! I think from now on, I will just need to practice preventive maintenance, since I think prevention is easier than treating the flare-ups. Thanks so much for listening!

[tex]

Hi again,

Despite the statistics quoted, MC is far more common than the medical community realizes. Only in the past few years have they begun to make progress in diagnosing the disease, because prior to that, most GI docs did not suspect MC, and if you don't look for it, you can't find it. (It can only be diagnosed by examining biopsy samples taken from the colon, under a microscope, to look for the markers of MC). Personally, I have a hunch that while it may not be as common as celiac disease, it may turn out to be in a similar range of magnitude, but no one has run any scientific studies to verify that, of course. Most of the data on MC prevalence, is obsolete.

Regarding the percentage of people with MC who are gluten sensitive, I posted the information copied below, in a response to a question by Naty, in the same thread in which you introduced yourself, but you probably didn't read that far:

Is the diet really the main thing with MC for everyone or does it vary from person to person?

Ant is quite correct, and to add to his comments:

According to Dr. Fine's research:

From the online lecture:

http://www.enterolab.com/Lecture/Lecturenew/frame.htm

On slide number 29, with the heading:

Prevalence of Gluten Sensitivity in Various Groups

69% of people with MC are sensitive to gluten.

You will find that the percentage of people on this discussion board, who are gluten-sensitive, is much, much higher than that, presumably because many individuals who have drug-induced MC, are not gluten-sensitive, and therefore, all they have to do to resolve their symptoms, is to stop using the drug, and allow their gut to heal, and they are home free. In many cases, their symptoms will resolve immediately, upon discontinuing the use of the drug. IOW, they do not need a support board, because their symptoms are easy to resolve, and any GI doc in the world should be able to resolve their symptoms, (provided the GI doc knows anything at all about MC). Based on cumulative test results from Enterolab, and opinions based on personal trial and error determinations, I would guess that approximately 95 to 98% of the people who are members of this board, are sensitive to gluten.

Almost everyone who is sensitive to gluten, is also sensitive to dairy products, (but there are a few exceptions, maybe 5 to 10%). About half of us are sensitive to soy, and fewer still, are sensitive to eggs, yeast, corn, carragennan, tapioca, etc. Your genetic makeup determines your tendency to have more or fewer sensitivities. Those with double DQ genes, virtually always have multiple sensitivities, and more difficulty in achieving remission, because they also tend to have a heightened degree of sensitivity.

Personally, I could never tell that gluten was making me sick - instead, almost everything else seemed to make me sick. After I cut gluten out of my diet, though, (along with a few other things), my symptoms slowly went away.

I know it could be worse, and I'm probably whining here, but life pre-colitis was certainly more enjoyable!

Don't let the GI docs fool you - MC is a very debilitating, and life-changing disease, and not only is whining justified, but this discussion board is a good place to do it, because all of us know exactly how your feel, (unlike those GI docs, and the rest of the world).

I think from now on, I will just need to practice preventive maintenance, since I think prevention is easier than treating the flare-ups.

You definitely have the right idea. Most GI docs treat IBDs by trying to treat flares, and then letting the patient "coast", with either no maintenance treatment, or an inadequate maintenance treatment, (usually one of the 5-ASA meds). Most of them will argue that diet has nothing to do with treating MC. Sooner or later, the patient will relapse, and then the Dr. will prescribe another treatment, and the cycle goes on and on. The problem with this approach, is that for many individuals, it can become more difficult to achieve remission, with each succeeding flare, and so the doctor has to prescribe stronger and stronger drugs, to get the symptoms under control. IMO, It's far better to use a regular maintenance treatment, (one that is optimally effective), in order to preempt the flares from happening in the first place. This helps to minimize the amount of damage that the disease tends to cause to the intestines, and it gives the treatment a jump-start for the times when an unusually severe flare erupts, so that it's easier to bring it under control.

And last, but not least, IMO, stress is a much more important factor in this disease, than the medical community realizes.

Again, welcome to our online family,
Tex

[mia]

Welcome! This is a great place to come for support and advice. Tex has already given you a great start, so I will just chime in to say welcome.
(Diet is a huge component of controlling this for sure.
Mia

[Rosie]

Welcome, Butterfly!

I have read alot on the forum regarding the gluten-free diet. I hate the thought of implementing that, since it seems so complicated and restrictive, so I am putting it off for now. Since from the beginning I seem to tolerate eating regular white bread, pasta, cereal, oatmeal, etc., with no out-of-the ordinary ill effects, I am thinking gluten isn't a real problem for me. But, am I deluding myself? Does anyone have a stat on how many CC sufferers are gluten-intolerant?

When I first found the forum in June of last year after getting a diagnosis of LC following a colonoscopy. I, like you, found it hard to believe that I was gluten intolerant. I had been dairy intolerant--not just lactose, but to milk protein, for around 4 years, and I remember Tex telling me that he would be very surprised if I wasn't also gluten intolerant since the two almost always go together. I had the colonoscopy because I had been having serious D for several months. The GI doctor made a comment about how fish oil could cause D, so after my colonoscopy I quit taking the fish oil and all other supplements. Amazingly, my D went away. I just figured that one or more of my supplements had caused the flare, and continued to eat my usual diet that included lots of bread and pasta. But even though I didn't have D I still didn't feel healthy, so I decided to trust to the accumulated wisdom on the forum, and do a trial of going gluten free. I couldn't believe what happened in just a week. I had been having trouble with a very hoarse, weak voice, constant throat clearing and asthma for several years that had just kept getting worse. Within a week, my voice was so incredibly improved that everyone was remarking on it. The fatigue that had been with me for so long started to lift, and the troublesome foot and leg cramps that would wake me up at night improved dramatically. So I became a believer! I was also inspired to get tested by Enterolab, which confirmed the gluten intolerance and also showed, much to my unhappiness, that I was also sensitive to soy and yeast. So I eliminated them from diet. Over the past year, I have learned to live with my food intolerances and feel pretty stabilized. I actually enjoy my food, as I have found ways to cope with my restrictions. Tex and others on the forum thought that once I had healed that the yeast intolerance should improve, and I have found that to be true. I now can drink wine and eat Udi's bread without a problem, although I still avoid products that contain yeast extracts. And oddly enough, I still haven't been able to add back fish oil supplements, even when I made a special effort to get fish oil that didn't contain any soy. And whenever I've tried salmon, it causes digestive problems. So for me there is something about fish oil that my gut can't tolerate. We are all different in how our systems work.

So I would encourage you to give a trial to going gluten free, as gluten can cause a host of other problems besides just diarrhea, as I found out.

Rosie

[butterfly]

Thanks for all your great responses. You made me feel very welcome! But, I wanted to ask, what is "drug-induced" MC? What kinds of drugs are you referring to? [/u][/i]

[tex]

MC has been associated with a number of drugs, including, (but not limited to), NSAIDs, SSRIs, PPIs, bisphosphonates, beta-blockers, and statins. The list continues to grow, as new case studies show problems with additional drugs.

http://www.ncbi.nlm.nih.gov/pubmed/17100977

http://onlinelibrary.wiley.com/doi/10.1 ... 2561.x/pdf

Tex

[natythingycolbery]

Thanks for all your great responses. You made me feel very welcome! But, I wanted to ask, what is "drug-induced" MC? What kinds of drugs are you referring to? [/u][/i]

Hey, I have got LC which my GI thinks was caused by the antit-depressents i stared in may, so mine is drug-induced. But also they think the use of NSAID's started it and teh anti-depressent just made it really hit me this summer.

[JoAnn]

Welcome Butterfly, You have found the best to get the help you need to get well. I agree with all that has been said about diet. I was shocked to find out that I was gluten, dairy, soy, egg, and yeast sensitive after my tests with enterolab. It's taken time to adjust and figure things out, but it is they key to getting well. Good luck, JoAnn

[Gabes-Apg]

g'day from australia


and welcome to the site

what is "drug-induced" MC? What kinds of drugs are you referring to?

In my case i think doxycycline was the drug that kicked off my MC.

(noting that i had birth defects to my bowels, 3 lots of bowel surgery before age 25 and IBS symptoms since then, and my mother has crohns).

After taking some hefty doses of the doxy as a malaria protectant, around this time due to pain, inflammation and headache issues i was also taking quite a bit of ipruprofen (i realise now that the pain, inflammation and headaches were most likely due to gluten, yeast, dairy toxicity)

MC is unique for everybody
what triggers flares can be different for each of us, the symptoms we feel can be different, and what management techniques we use is also different. What works for one person may not work as well for another.
it takes a bit of time to figure it all out

One of the biggest risk to initiate flares (D etc) for me is stress, i mentioned in a post the other day i schedule potentially intense meetings late in the day so if i do react, i am at home.

Pondering the diet change for MC management is a big adjustment to your lifestyle and is a big decision, for me adopting the diet (I am gluten free, yeast free, soy free, dairy free) means I am reasonably well 90% of the time, and dont need to use meds for MC management.
Prior to the MC diagnosis I was following a Gluten Free, Lactose free, low yeast diet 80% of the time so to take the final step was not too difficult

Good luck with figuring out what works for you.

take care

[Polly]

Hi Butterfly and

You already have tons of great info to digest, so I really don't have much to add.

Like Gabes, I believe my MC was initiated by doxycycline, which I took as a Lyme disease preventive (I didn't ever get the disease).

And like others above, diet was key for me to go into remission. I can't recommend Dr. Fine's tests enough in order to begin to get a handle on food intolerances.

Looking forward to further chats.

Love,

Polly

[butterfly]

Thanks for all the great information. The drug thing was interesting. I have been taking a beta blocker for several years for heart palpitations. Maybe my PCP can come up with some other way to treat them and take me off of it. I also have migraines and take Imitrex, but seldom use any over the counter pain med, since they never help anyway.

One thing I am also wondering about is that no one is mentioning anything about coffee, either regular or decaf, as being a problem. It's a real sacrifice for me to eliminate it, and I'm wondering if it's a problem for anyone else. I can't say it made much of a difference when I replaced it with decaf or herbal tea, since nearly everything was bothering me, but if I can have my morning coffee back, I'd sure feel good. Again, I realize that diet seems to be a very individualized thing with MC, but I'm interested on any feedback on the coffee.

Has anyone who has a concern about weight loss found a way to turn that around while still dealing with all the restrictions we have to make on dairy (no ice cream), fat, and possibly gluten? I lost another pound and a half this week and am frustrated.

I am going to check out the info on going gluten-free, though. Trying it for a week would be worth it to see if it makes any difference.

butterfly

[Bifcus16]

Hi Butterfly.

Caffeine isn't normally involved in MC. If you could drink coffee without trouble before you got MC, you should still b e able to drink it afterwards. If you had trouble with it beforehand, you will still have trouble with it.

What can be an issue is how you have your caffeine - obviously adding milk to it is a problem for those who can't do dairy, and those non dairy whiteners are full of all sorts of dodgy stuff and a real gluten concern. So if you don't like your tea/coffee black, then you probably want to use a substitute milk, like rice or almond or soy milk (if you can do soy).

For some of us, weight gain is a bigger problem than weight loss. In general, once folk get the diarrhea under control and get the hang of the restricted diet, then their gut starts to improve, the ability to absorb nutrition improves and weight gain becomes easier.


Lyn

[Gloria]

Hi Butterfly,

I've also lost more weight than I'd like since restricting my diet. I have finally stopped losing by counting calories - the same thing I used to do when I wanted to lose weight.

I make a menu for each day of the week and count how many calories I've eaten as the day wears on. I make sure that I get a minimum number of calories each day.

I created a list of how many calories are in each item that I can eat. The list was easy to create because I can't eat very many foods. Eat what you need to in order to get those calories and try not to go below your goal. I suggest you limit sugar in your pursuit of calories because it contributes to "leaky gut."

If you are losing weight because of malabsorption, as Lyn mentioned, you will gain the weight back once your gut begins to heal.

Gloria

[tex]

Butterfly,

The Imitrex is an SSRI, of course, but whether or not it poses a significant risk, probably depends on how often you have to use it. Most drug-induced colitis is caused by the daily use of a drug that is prone to triggering the disease. Usually, occasional use is not nearly as risky, but, of course, everyone is different in their sensitivities to drugs.

Tex

[butterfly]

Thanks for the feedback, guys. I didn't realize, Tex, that Imitrex was an SSRI. I was getting alot of headaches during the spring prior to my flare-up, since our weather was crazy, and I think I was reacting to the barometer, so maybe the Imitrex overload was a factor, as my flare begain in June.

Also, thanks for the info on caffeine. Sounds promising! And, I like the idea of counting calories to get enough and not to limit myself - kind of like a weightwatchers in reverse! Gloria, what are the things that you add to make sure you are getting the right amount of calories to keep your weight up?

I printed the Enterolab brochure, and it looks interesting. What's the skinny on this place? Have alot of you used it? Are they good and trustworthy people to work with? Are the results accurate? What is the medical community's take on their mail-away lab tests? Do doctors ever order the tests through the lab themselves to give to us? I am thinking of requesting the gluten sensitive one, but is it worth it to order them all (gluten, egg, yeast, soy, etc.) and just pay the money to get the whole picture?


butterfly