Newly Diagnosed

[Mary Lamb]

Hi I am newly diagnosed MC August 14 after a few bouts of very troublesome symptoms. I was almost house bound for a month with chronic D. I also had a peptic ulcer. After taking imodium for about 3 months things seemed to be getting better so I stopped taking it and my symptoms all came back only worse. As well as the chronic D terrible leg cramps at night that cause me to jump out of the bed and migraines.
When I was diagnosed the GI gave me no information what so ever and sent a prescription to my GP for the steroid he also had no information for this condition, all the information I have found has come via this web site and Wayne Persky's book, which I read from cover to cover as soon as it came through the post. It was like some one switching a light on and now feel much more in control of my life again.

I was a vegetarian for 26 years but now that is out of the question as I cannot tolerate the fibre, I also gave up dairy as that causes big problems , gluten, soy and eggs. I have been living on turkey, fish, rice and mashed potato for about six weeks and just managed to add in 2 table spoons of very well cooked mashed carrot, which is OK.

I started taking a steroid Budesonide 5 weeks ago and things are improving from 16 to 18 visits to the bathroom a day to around 4 or 5 I also have a undiagnosed condition that I am seeing a neurologist for but I wonder if this may be another Autoimmune disease.

My sister in law suffers from Crohn's and has a drug called Cholestyramine Resin or Questran and she said it is wonderful. Has anyone tried it or herd of it being sued for MC. I see my GI tomorrow and will ask if it is suitable for me to use when I finish the steroid in 2 months. This really is a life changing miserable disease .

[tex]

Hi Mary,

Welcome to our Internet family. Yes, this is definitely a life-altering disease. And yet many doctors pretend that it is nothing to be concerned about. If only they could enjoy living with it for a few months so that they could see what it is actually like.

Most of us here are magnesium deficient, and that causes the leg and sometimes foot cramps. But oral magnesium can be a laxative when taken in significant doses, so we have to be careful about how we treat our magnesium deficiency. Magnesium glycinate is the only form of oral magnesium that seems to be free of the risk of causing diarrhea, so some of us take it. Many of us use a magnesium oil spray on our skin, or use an Epsom salt foot soak, or even add Epsom salts to bathwater. All of these methods help, and do not cause diarrhea in most cases. One member recently reported that it seems that applying magnesium to her skin causes diarrhea, but so far she is the only one who has encountered that problem.

A deficiency of other electrolytes can also cause cramps. Potassium deficiencies are common when diarrhea is chronic, for example, and so a potassium deficiency can also cause cramps in some cases. For most of us though, a magnesium deficiency seems to be the main problem.

It appears that you are doing very well with your diet changes, and your recovery is on track. If all goes well, and you don't have any undiscovered food sensitivities (or any cross-contamination) in your diet, after roughly 6 months or so of healing, you may be able to control your symptoms without the need for any medications. Many of us here control our symptoms by diet alone, and some of us have been doing so for many years. After sufficient healing occurs, you will be able to add many foods back into your diet (such as fruits and vegetables and other sources of fiber). You may need to limit the amounts at first, to allow your digestive system time to adjust to them, but most of us are able to expand our diet after we heal.

Some members here have used bile acid sequestrants such as cholestyramine, but many of them find that they either are not effective, or they cause moderate to severe cramps. In general, the members who seem to do best with bile acid sequestrants are those who are recovering from gallbladder surgery. And after a while, those recovering from gallbladder surgery typically no longer need to take a bile acid sequestrant, either.

You would be much better served if your doctor would allow you to take a reduced dose of budesonide for 2 or 3 additional months, to allow more time for the diet to heal your intestines, and to allow you to very slowly taper off the budesonide. The slower we taper off the budesonide, the higher our odds of successfully remaining in remission when the drug is withdrawn. If it is withdrawn too quickly (without a slow dosage taper), a relapse is very likely. In other words, if those extra months are spent slowly reducing the dose, the success rate is much, much higher.

None of us enjoy making these lifestyle changes, but we do what we have to do to get our life back, and surprisingly, most of us are happier, and we appreciate life even more than we did before our symptoms began. It seems that this disease at first isolates us, and causes us to feel hopeless, but after we learn to control it, we discover that we have a newfound appreciation for life and the world around us. It's a silver lining for the cloud that hangs over this disease, that we never expected.

Again, welcome aboard, and please feel free to ask anything. And thank you for the kind words about the book and the website.

Tex (Wayne)

[Skyward]

Welcome Mary- I'm new here too and I just got my book in the mail yesterday. I have to say that I think I'd be lying in my food diary if I don't admit that I ate the book today.
-Sarah

[Mary Lamb]

Hi thank you for your reply Tex it was great to hear from you and all the kind replies and welcomes.

Things were going well on the steroid until I had to go done to 3mg per day then after only two days back to very loose stool again 3-5 times a day, although mostly in the morning, I work later in the day which is fortunate as I cannot go out before about 11 am as I don't feel safe to leave the bathroom. I am also taking lansoperazole to protect my stomach from the steroid as I had a peptic ulcer before. I know that this medication is bad for collagenous colitis, I have to have a endoscopy in a couple of weeks and if the ulcer is OK I will ask to stop taking the Lansoperazole.

I am still only on very basic diet fish, white meat and rice with just a few well cooked veg, Carrot, sweet potato and tinned green beans which were all OK when I was taking 6mg of steroid. This is really frustrating I have given up all foods which I used to eat and enjoy and now enjoy nothing ( I was a vegetarian for almost 30 years) and I have not had any fruit for almost five months, but I still seem to have not come very far.

I have lost so much weight is hard to work and carry out every day things as well, due to lack of energy both physical and mental. Poor sleep is also a factor, although I can tolerate 1 tsp of cashew nut butter on toast a day and this seems to help a great deal with the night cramps, only have to get out of bed a once or twice a night instead of five or six. I feel that I am becoming depressed over this and try to stay positive but it's very difficult. My GP doctor said to just go back to eating normally to put on weight, but then I would be back in the bathroom all day.

This disease seems to over shadow all my life, I hope to travel to see my grandchildren.( They could not come to us at Christmas time as we only have one bathroom and I get paranoid that some one will be in there when I need it, so no one has visited us for six months.) How ever the journey is four and a half hours in the car and I am anxious about that, but they do have two bathrooms :)

Does any one else have problems with lose of sensation in their skin or reflex loss and leg problems?

I was wondering about taking imodium along side the steroid , has any one tried this ?

Sorry to sound so miserable, but my family get sick of hearing about this problem and I get sick of thinking about it.

Thanks for reading this, collagenous colitis is a lonely place, my daughter said that perhaps I should get some counselling but who would understand this disease apart from some one that has it.

Mary Lamb

[tex]

Hi Mary,

I'm sorry you're having a relapse of symptoms. Your symptoms are almost surely due to the lansoperazole, because proton pump inhibitors are well known as a cause for CC. Hopefully you will be able to discontinue the use of that drug.

The fact of the matter is, the outdated belief among some doctors that typical short-term use of a corticosteroid requires protection because of a risk of ulcers, is disputed by more recent research. Many doctors still believe that it's a problem, but the most recent research shows that the risk is extremely low, and preventative treatment is unnecessary. So you may be taking that PPI (and suffering from CC symptoms because of it) for no good reason. For example, here is what a recent research article concludes. You can read the entire article at the link below, or print it out and show it to your doctor, if you prefer.

In conclusion, the body of knowledge on the possible ulcerogenic effects of steroid treatment in humans has grown very little in the last years. The more recent clinical studies (and subsequent meta-analyses) available in the scientific literature date back to the 90s and the experimental studies performed in the last two decades have added precious little to what was already known in the past.

Due to the apparent lack of interest by clinical researchers, the myth of steroid ulcers, although based on a very weak and disputable clinical evidence, still survives. In daily practice development of peptic ulcers in steroid-treated patients remains a very infrequent event, for which pharmacological protection is seldom required and the most effective drug prevention is still undetermined.

Core tip: Although the myth of steroid ulcers still survives among general practitioners, the incidence of ulcers in patients receiving corticosteroids is so low that concomitant gastric protection is not necessary except in patients on long-term, high-dose steroids or taking concomitant non-steroid anti-inflammatory drugs.

Steroid ulcers: Any news?

Even if you should happen to be one of the very few who actually needs a medication to protect your stomach from ulcer development, it's possible to use an H2 type antihistamine instead of a PPI, to achieve a reduction of stomach acidity. The primary difference is that you would have to take an H2 antihistamine several times a day, because their effect does not last as long as a PPI. Examples of H2 antihistamines that can be used include famotidine, cimetidine, and ranitidine.

Yes, it is safe to use Imodium while using a corticosteroid. Many members here have done that with no problems.

And you are quite correct that this is a very lonely, isolating disease. And it's true that no one actually understands how debilitating it can be unless they actually have the disease themselves.

Hopefully, you will be able to get rid of that lansoperazole (that in my opinion never should have been prescribed to a CC patient in the first place), so that you can get on with your recovery based on the diet changes that you have made.

Good luck, and please keep us posted on your progress.

Tex

[Mary Lamb]

Hi all,
Wow what a change in my condition over all, I went to the hospital for the OGD camera and the ulcer had gone and no bleeding so got the OK to stop the Lansoprazole. With in a week I was able to reduce the steroid to 3mg from 6.I was taking the 3mg for about three weeks,when during this time my mother suffered a stroke so I was all the time worrying about her and going to the hospital and for a couple of days was glad to not have to worry about running to the toilet. Until I had a really bad stomach ache and I thought what did I eat yesterday, when I checked my food diary I realised that I had only been to the toilet three days out of the previous seven. Hello constipation! I was so pleased that I have been keeping a stool chart as well as a food diary or I could have been in trouble, I picked up some suppositories from the chemist and they helped.
I stopped taking the steroid two weeks ago and apart from difficulty going to the toilet. It's difficult now after six or seven months of loose watery stool knowing what fibre to include.
So far I have been able to tolerate banana, cooked pears and apple and some delicious kalamatra olives (my favourites). |I feel like I am rising from the dead and hope that as long as I avoid my usual suspects gluten, dairy, soy, eggs and oats that everything will be relativity OK. Just need to find a happy medium, but I feel at last a lot more positive about things and you are definitely 100% right about diet. I always go back to my "Wayne bible", It has helped me so much with understanding this nasty little disease and if I did not have the ulcer then the steroid would have worked quicker and better for me long ago without the lansoprazole.
Another thing about avoiding these trigger foods I have noticed other improvements in my general health, I used to suffer from bladder weakness and stress incontinence but since leaving off the gluten the improvement has been 100% and my eye sight is better. Also every one around seems to have virus after cold after cold and I have not caught any I read an in then newspaper about refined sugars affecting your immune system and I haven't had any so that could be true.
My mother is doing well thanks to the great work at the hospital in Cambridge (England) and is back to almost full health :)

Thanks again Wayne and for every one else on the forum the reading the chat and posts from other people is really helpful.
This is the best I have felt in about 10 months :)

[tex]

Hi Mary,

You are more than welcome, and thank you for the inspiring and informative update. It's truly gratifying to hear that you have your life back. And all the unexpected fringe benefits of the diet changes will help to make life even more enjoyable.

Kudos to your mum's doctors and nurses at the hospital in Cambridge. Successes such as that are priceless.

Thanks again for posting an update, and with your new diet and the skills you've developed at keeping a food diary and analyzing it, I have no doubt that MC will never again dictate how you live, because if an accidental flare should develop, you now know how to deal with it.

Wayne

[Gabes-Apg]

Mary
fantastic news!! for both you and your mum.

I hope the wellness and healing continues

PS - magnesium is a great option to help with regular bowel motions, AND increase cell health and wellness....

[Mary Lamb]

Thanks Gabes and Tex

I will look for a magnesium supplement that has no soy or lactose.

It's great to feel that I have some kind of control of my life again.


I hope that all the new people that look at this forum really look at their diet and make the changes they need to, it is so very difficult to begin with especially as I was a vegetarian, but not as difficult as sitting on the toilet 20 times a day and oh so worth it in the end. :)

[gac]

I don't care what tests say or what the doctor says, when I stopped eating gluten, my symptoms improved so much. This was before I was ever diagnosed with MC. I had been thru a severe bout of diarrhea that gastro doc couldn't figure out what problem was. Went thru all those intestinal tests and I guess he never did any biopsies of my intestines but he never saw MC. He was looking for Crohn's or colitis and told me I had neither one. I was so sick and could find nothing to eat that didn't tear up my intestines. Finally was down to eating only scrambled eggs and grits. When I told my nephew, who was pre-med at the time, that grits were settling OK in my intestines, he suggested a gluten problem since grits are corn products. When I eliminated all gluten, diarrhea stopped within 24 hours. If I ate anything with gluten, the diarrhea began again and there was a unique odor that I began to recognize as a "gluten diarrhea" odor. Since then, I have rigidly followed gluten free diet. But that did not stop me from developing MC. Now I've had to eliminate even more foods from my diet - all fruits (as my body cannot handle any of them right now), all dairy (as my doctor doesn't want me to anything dairy until my intestines have had time to heal on the Endocort), many meats (as they are to greasy or rough to digest), some vegetables (like beans). I cannot imagine being able to go to any restaurant to eat dinner and I used to be able to do that with caution. Now I'd be too afraid to even try eating out and what would I order? Maybe with time I will find that I could order a baked potato or steamed vegetables but why would I go to a restaurant to order what I could prepare at home???? I love seafood, Mexican food, Chinese food, etc. but I cannot imagine eating any of this unless I want to make myself sick. Is this going to be my life forever?

[tex]

I love seafood, Mexican food, Chinese food, etc. but I cannot imagine eating any of this unless I want to make myself sick. Is this going to be my life forever?

Most of us find that after we begin to get our symptoms under control, life is as enjoyable as we choose to make it. We learn what we have to do to remain in remission, and we learn how to apply these rules whenever we leave the house to enjoy the outside world again. Once you are in remission and your intestines begin to actually heal, your energy and your outlook on life will slowly change, but it will change dramatically. After our gut has healed, we are usually able to slowly add back many foods into our diet (except those that cause our immune system to produce antibodies, such as gluten, dairy, soy, etc.).

There is a very good chance that you might have already had MC when you cut gluten out of your diet. The anti-gliadin antibodies produced in response to gluten have a very long half-life (120 days), and until our antibody level falls significantly, our immune system tends to ignore other food sensitivities as it concentrates on it's priority, namely gluten. Once that level comes down to a more reasonable level, then the immune system begins to notice other food sensitivities.

That said, it is certainly possible that the MC developed later, especially if your vitamin D level is low. A vitamin D deficiency significantly raises the risk of developing additional autoimmune diseases. Also, IBDs deplete vitamin D supplies in the body, and of course celiac disease is an IBD.

And you are correct of course in pointing out that if our body says that a medical test result (or our doctor's opinion) is wrong, then we have to pay attention to what our body is trying to tell us, because our doctor won't be the one living in the bathroom because of the mistake.

Tex

[gac]

I have suffered from fibromyalgia for about 20 years - along with it comes huge number of symptoms and I have seemed to have all of them. Was also diagnosed 6 years ago with immunogammaglobulin disorder - my body no longer had any of its childhood immunities. All those immunizations I've had all those years ago were gone. All the pneumonia vaccines I've had were gone. My body was developing no immunities to anything. So now I have MC. Are any of these related in any way?

[tex]

Please be aware that not only is magnesium deficiency widespread among the general population these days (most people are magnesium deficient), but it is much more common among people who have an inflammatory bowel disease such as MC. Why is this important? Because magnesium deficiency is often misdiagnosed as fibromyalgia. Most doctors wouldn't recognize a magnesium deficiency if it bit them on the end of their nose.

And the reason why magnesium deficiency is so widespread is because doctors are not taught the proper way to test for magnesium deficiency. They virtually always order a blood test, and the level of magnesium in the blood will almost always be normal, because the body will draw magnesium from the cells all over the body in order to keep the blood level constant (because magnesium is a vital electrolyte). Therefore the blood test won't show a deficiency until the total body reserves of magnesium are almost empty, and the individual is at risk of having a stroke or heart attack. Been there, done that. There is a tissue test for detecting magnesium deficiency, but doctors almost never order it.

Immunoglobulin deficiencies are much more common in individuals who are sensitive to gluten, than they are in the general population. Therefore, yes, they are much more common among people who have MC. This topic comes up somewhat regularly on this board.

Tex