Just diagnosed with Collagenous Colitis

[wonderwoman]

I had a colonoscopy with biopsies on Feb 8th. Right after the procedure I was given samples of Ultrase 20 because Gastro Dr thought I may have a pancreas enzyme deficiency because I told the Dr I had a bad flare up after eating a very delicious greasy steak. This RX would help with the digestion of protein, starches and fats. My D was greatly improved and I was so happy. Then on Feb 12th I was told the biopsies revealed I have Collagenous Colitis. I was given Rx for Balsalazide an antibiotic drug that reduces swelling in the colon. I am to take 2 capsules 3 times a day for two weeks and then 3 capsules 3 times a day. Dr said that the Ultrase 20 would not help the Collagenous Colitis. I told him I felt the D had improved since taking Ultrase 20. He said to continue to take it as I may have two things going on. Then when I run out, if the D returns, we would know I have two Dx. OK. Well I started the Balsalazide on Feb 13 and each day my D has become worse. Before taking it I had 1 or 2 soft BM's a day. Monday afternoon Feb 15 I ate two very very small tangerines. The D started that evening. I had four BM's. Won't eat them again. Then Tues the D continued. I had 12 BM's in 15 hours. I took 8 PeptoBismal that had no effect. Today I had a bland diet and had 7 BM's and took 10 PeptoBismal. I am about in tears as I lead a very active life. Although I have not have any embarrassing accidents in public, it is bound to happen. I do a lot of dancing and hate to leave my instructor, partner, and other couples standing on the floor while I go to the bathroom. Never know if it is gas or the real thing. I have done a lot of reading on the internet. I don't know what to do. I have read some of the posts here and the replies. I want to call the Dr tomorrow and ask if any of the blood tests he did were for Celiac Disease. I was so sure that was not my problem but the more I read, I find there is often an association between the two. Hope someone can help me.

[Jan]

Dear Wonderwoman,

Welcome to our family. I have to admit I'm not familiar with either one of the drugs you are taking. I do know I tend to react easily to drugs so am usually suspicious of one if I have a change, like you did.

At one time it was recommended to take 8 Pepto several times a day for a limited time. My GI started me there, with no success. When I was out of control, I would take Immodium before I went out. My GI said I could take up to 7 a day.

I am one of the few here that does not react to gluten. However, I do react to oats. By leaving the few things out of my diet, I have been able to achieve and keep remission. The only exception to this is if I eat too many salads. Something about the lettuce eaten frequently is still a problem.

I don't have any other answers for you except to keep reading. I am sure some of the others will pop in with their experience to share with you.

Good luck on the journey of figuring out this disease and how it affect you.

Jan

[JLH]

WW, we're glad you found us.

I was diagnosed (LC) on a Friday. My GI gave me the choice of Entocort or Lialda. I asked for time to think about it. She said sure, check out the internet.

I was backwards, I found Enterolab first and set out to find if it was legit. Thank heavens, my travels on the www led me to the PP where I found information and support. Now I am teaching my GI what I have found here and at EL. I had all the EL tests, btw.

Read and read some more, here and at www.enterolab.com
It's hard to believe but the answers are at are both sites NOT Mayo Clinic or other large medical centers!

[tex]

Hi Wonderwoman,

Welcome to our internet family. First, please be aware that your CC will not be controlled overnight, simply by taking a "magic elixer". It takes a while to get this disease under control, and it takes some dedication and attention to detail. You can get your life back, however, and if you do your part, you will once again be feeling like the Wonderwoman you used to be.

Balsalazide is commonly known as Colazal, and it is not an antibiotic, but rather a salicylate-based medication from the group known as 5-ASA drugs, which includes brand names such as Asacol, Colazal, Pentasa, Lialda, Rowasa, etc. Most GI docs are not aware of this risk, but in a few patients, the 5-ASA meds carry a risk of causing pancreatitis, (inflammation of the pancreas). We, (the members of this board), have found that the disease itself, (MC), sometimes causes pancreas issues, which will resolve when the MC is controlled.

I'm not a doctor, but my guess is that you are experiencing some degree of pancreatitis, thus resulting in a production deficiency of pancreatic enzymes, which is the reason why you respond favorably to the Ultrase 20. That supplement is a combination of lipase, protease, and amylase enzymes, which are normally produced by the pancreas, and are important in the digestion of fats, proteins, and sugars. It's possible that many of us might respond favorably to that supplement, but in general, that's treating the symptoms of MC, and not the cause. Also, if your pancreas is already inflammed, that could obviously be why the Colazal just makes symptoms worse.

Your GI doc is correct, of course, that taking the Ultrase 20 will not help to bring your CC under control. To do that, you either have to address the cause, (the source of the inflamation), or treat the symptom, (inflammation), by trying to reduce the inflammation by means of a 5-ASA med, a corticosteroid, or an immune system suppressant, such as one of the anti-TNF drugs.

There are three basic ways to control MC:

Drugs
Diet
A combination of a drug and dietary changes.

Many of us here control our symptoms completely by diet alone. If you prefer to use a drug, then ask your GI doc for a prescription for Entocort EC. It is by far the most effective, yet relatively safe, drug available for treating MC, in the long term. Whatever method of treatment you choose to use, be aware that the treatment must be continued for the rest of your life, because once MC is triggered, it is a permanent condition. The symptoms may wax and wane, but like the other inflammatory bowel diseases, (Crohn's disease and ulcerative colitis), the disease itself cannot be cured. The symptoms can definitely be controlled, though, and our success rate on this board is very high, for those who develop a treatment plan that fits their lifestyle, and who follow it carefully.

Pepto-Bismol, at the rate of 8 or 9 tablets per day, for 8 weeks, will control the symptoms of MC in 85% of patients, or better. However, unless you are carefully following the gluten-free diet during that period, and you continue the diet indefinitely, a few days after the Pepto treatment is completed, symptoms will return, in most patients. IOW, the diet is the key to remission, but the Pepto treatment can bring remission much faster than the diet alone. Some of us react adversely to Pepto, however, and even for those who can tolerate the treatment, the Pepto treatment cannot safely be extended past about the 8 week point, due to the risk of toxic accumulations of bismuth subsalicylate in the body.

Again, welcome aboard, and please feel free to ask any questions that come to mind.

Tex (Wayne)

[ant]

Dear Wonderwoman


Sorry you have MC but glade you found us. This site has been my savior. So little is known by many in the medical profession about MC that if I had not found Potty People I would have been way off track. Initially I did 8 months of pepto bismal and was told by my GI to eat what I liked. The moment I came off it back to square one. Then I went on entocort and a DF, GF, SF, legume free diet and have gradually over 9 months got better. I am still not there but can live a more or less normal life and have hope I will get off the Entocort eventually.

I want to call the Dr tomorrow and ask if any of the blood tests he did were for Celiac Disease.

Good point! I wish I had asked my doctor to do that it the beginning. Now, I have been GF for several months there is no point. And I certainly will not do a Gluten Challenge now.

Wishing you all the best in your journey to remission, Ant

[Andi]

Wonder Woman,
I am so sorry to hear about your diagnosis. I also was diagnosed with collagenous colitis in Aug. of 08. I tried Asacol which according to Tex is similar to the drug that you doctor gave you. I was on it for 5 months and it did not help at all. It is worth sticking with it for a while because it does help a lot of people.
The people on this forum know more about colitis than any doctor I have seen so you should get some good advice. I had been feeling really good for the past year so I basically forgot I had colitis until last week when it came back full force.
I am interested to learn more about the diet aspect since I dont want to take a steroid.
My doctor did test me for celiac disease and it came back negative. But what I learned from people on here is that just because you dont have celiac disease it does not mean you dont have a sensitivy to gluten. It seems that nearly everyone on here who went on a gluten free diet is feeling better.
I wish you the best of luck.

[wonderwoman]

I want to thank everyone for their words of encouragement. I was in tears this morning when I found people were actually interested in helping me.

I know from my research there is not a quick fix. I have a call in to the Gi Dr to see if he tested for Celiac and if not I am going to ask him to test me for it. Then I may ask for the prescription for Entocort EC rather than the Balsalazide I am taking now. GI dr said diet does not help CC but I tend to disagree. I think I have more going on than just CC. Probably Celic Disease. For now I need to just take one day at a time.

Now I've got to get off this computer and get my house cleaned up. I am having 8 for dinner on Monday night and want to serve a chicken casserole with wild rice. I bet wild rice is off limits for the Celiac person. Is that right?

[JoAnn]

Welcome Wonderwoman, my life was out of control until I found this site. Follow the advice you've been given so far and read all you can here. I was told also that diet didn't matter, then I did the Enterolab tests and found I have multiple intolerances. Diet, entocort, and supplements have helped me on this journey which I never would have known about if it wasn't for this wonderfu board. Good luck on your journey to healing. JoAnn

[Rosie]

I'll add my welcome to the Forum. I'm a relative newbie, having gotten my LC diagnosis last June. The people on the Forum are so helpful and supportive. You are on the right track with suspecting gluten as an issue in your disease. I would strongly encourage you to get tested at Enterolab for the common food intolerances of gluten, dairy, soy, eggs and yeast. Having the information and facts to point you in the right direction for long-term healing are key to taking charge of your MC. Hopefully with meds and diet you will be feeling better shortly.

Never know if it is gas or the real thing.

Some one on the Forum came up with the saying "Happiness is a dry fart". A sense of humor helps, but unfortunately is one of the first things to go with our disease........

Rosie

[JLH]

Diet (food) has everything to do with MC (LC & CC). Tex and Polly and others were my inspiration to just use diet and not
any drugs to fight this disease.

BTW, most doctors will poo poo (pun intended) diet as treatment, so don't feel alone. Listen to the PP.

[tex]

I am having 8 for dinner on Monday night and want to serve a chicken casserole with wild rice. I bet wild rice is off limits for the Celiac person. Is that right?

Provided the chicken is safe, (not one that has been injected with a solution to make it tender, juicy, etc.), and provided the rice has not been "enriched" with wheat gluten, that should constitute a safe celiac meal. Unless, of course, you add a sauce or seasoning that includes wheat flour, or some other source of gluten. IOW, rice gluten, (known as orzenin), is safe for almost all of us. Very, very few people in this world react adversely to rice.

The protein prolamins that we have to avoid, come from wheat, rye, barley, and for many of us, oats. Ancient relatives to wheat, such as spelt, kamut, einkorn, and emmer, and the wheat-rye cross, triticale, also have to be avoided, of course. The other grains, including corn, rice, sorghum, millet, amaranth, buckwheat, (which is not really a grain), quinoa, teff, ragi, etc., are generally safe for us.

Tex

[wonderwoman]

Just before shutting down my computer late last night I came across the saying, "Happiness is a dry fart". I took a bright yellow piece of paper and wrote that little saying on it in black magic marker and posted it on the microwave. How true! I have to laugh every time I see it. That's better than crying and I've done a lot of that lately.

I had to take a break from cleaning to check messages.

My question is , is the almost black "Wild Rice" going to be a problem? And then also, should I be using butter or margerine. I use very very little but do like either on some foods. For cooking I use olive oil or canola oil.

I have used soy milk for the past several years because of the convenience of it. I will try the rice milk.

I have oatmeal every morning made with oats & 6 grain cereal, and raisens. I make enough for a week and reheat in the microwave. I didn't have it this morning. I had eggs instead and have only had 1 BM today so far. Great!
Charlotte

[JLH]

I hated giving up oatmeal. I do need it for cholesterol lowering........... I will start another thread for that subject.

Glad to hear that you are somewhat better already.

Some oatmeal is certified GF but I suppose it has too much fiber.

[tex]

Charlotte,

I believe that Polly originated that inspirational saying, many years ago.

Wild rice is not a problem, from a gluten standpoint. Wild rice contains the hull, (just like brown rice). White rice is made, simply by removing the hull from brown rice. Most of the nutrients are in the hull, so that's why white rice is usually "enriched" after milling, because most of the nutrients are removed during the milling process. The hull also contains most of the fiber. If you eat a lot of it, the fiber might be a problem, but that's probably not a serious risk. At any rate, wild rice should not trigger an autoimmune reaction, the way that wheat gluten would.

If you're avoiding dairy, (casein), there are a few safe margarines available, but they are very difficult to locate. Maybe someone else can provide the details on locating a safe margarine to use - I'm not very familiar with them. An excellent substitute for butter, is ghee, which is clarified butter. It should be available at most health food stores. Those oils you mentioned should be quite safe to use, and healthy, to boot.

There is also almond dream, which is an almond milk. If I recall correctly, Diamond brand almond milk contains soy. Some members like the taste of hemp milk, (milk made from hemp seed). There are more than one version available, and preferences vary on the flavor. I found that I didn't like the flavor at first, but after trying it 3 or 4 times, on cereal, I prefer it to cow's milk.

Most mainstream cereals contain some form of barley malt, which contains gluten, (technically, it's called hordein, which is specific to barley, rather than gluten, which is specific to wheat). GF versions are available at health food stores, but at least 6 flavors of General Mills' Chex cereals are now GF, including Corn Chex, Rice Chex, etc., and they are priced at regular cereal prices, at regular stores. Most of the health food store stuff gets to be a bit pricey.

Be aware that most oats are cross-contaminated with wheat. There are a few that are certified to be gluten-free, and may be safe. Unfortunately, a fair number of us, myself included, react to oat gluten, (avenin), even if it is pure. And, as Joan points out, oats are an excellent source of fiber, which can be a problem for some of us during our recovery phase.

Congrats on only one BM today. Cutting out the cereal, might have played a part. We have to celebrate the little successes, because often recovery can be a one-day-at-a-time journey.

Tex

[Gabes-Apg]

Hi there Wonderwoman/Charlotte

apologies you have the colitis demon, but also I thank the angels and the universe you have found this site. This is not just a forum, it is a family, there are lots of wise supportive people who do care. You are allowed to celebrate the wins, share the challenges and vent and wallow about frustrations and disappointments, and the MC family will be there.

I was diagnosed in Dec 09. Thanks to the wonderful people and inforamtion on this site i managed to get reasonable control within 3 weeks. This was mainly due to diligent diet more so than meds.

allocate the time to peruse this site (the search function is fantastic!!!) the amount of information is a bit overwhelming at first, it is worth the time and every time i read some of the older posts i learn something new.

the other thing i have loved about this site is that you can ask ANYTHING about our waste management system. at some stage there is someone who has had similar situation/symptom.
quite a few of the people here have done the hard work regarding products and their ingredients. (I am based in Australia and we have different brands and products. ) and they are more than happy to share this knowledge

GOOD LUCK - with the transition
and hope the BM continue to improve

take care