"Magic Bullet"

[seabare]

Hello all,

I have been reading all new posts with interest.

Although my GI still will not confirm my diagnosis as MC, he has put me on Entocort. I am now in week 3 of the scrip. Let me say the honeymoon period (that you experienced posters probably noticed with a hint of let 's see how long this lasts) is over.

I had a wonderful 3-4 day initiation period. It was like I was re-born. (Sorry to all you brave and tolerant souls who go it w/o drugs--I've just been at this too long to wait to see if that works.)

I felt great for a few days. I must say that I still feel better than I have in years. But the old D and the constant "gurgle" have returned, just not to the constant extent as before. My husband slept in the guest room the other night as my night "music" kept him up....

I do have a positive to report. For the first time down this path, my new GI Dr. actually called me! He (his nurse, my new best friend), said that maybe I should come in sooner than the 12 weeks estimated--based on my current reports.

My God--what an event! The Dr. calling the pt. to schedule an appt. sooner than plannend! I am hopefull that means I have one of the non-comatose Drs. out there.

Anyway, sorry but a couple of quick questions:

Is a loss of appetite completely normal? How about only craving bland foods like mashed potatoes? Does anyone have a remedy for the constant and sometimes very loud gurgling? I work part-time in a small office w/only 1 ba/rm. and it is not very subtle... Imodium, although helpful with the D does not seem to helpl with the constant stomach in knots situation. I still am on Vicodin for the pain--which makes me loopy and not a good employee.

I continue to lose weight. My BMI is only 15% and since I'm not hungry, and feel better when I don't eat, I'm not sure what to do next. I'm already small by stature, but this is not good. I weigh less than I did 15 years ago when this all started.

Wayne, I don't know if you are following this, but I, too have been where you are, really. I have experience with another issue that I believe to be also autoimmune related. Please listen to the excellent advice of the other posts and do whatever you can to help you to help yourself. Enllist whatever family and friends you have to help you at this critical point. You have to get out of the pit before you can get better with the MC. I know I'm new, but on this subject, I do know of which I speak... I have been in the disease and drug induced fog for years now, only to realize now--just how far gone I was. People stopped believing in me and my strengths, skills, knowlege and abilities and that can be devastating, professionally, personally and esp. emotionally.

I hope this is a help to some and a confirmation to others questioning their situations/diagnosis. It seems the more I read, the more complicated the issue(s) become.

To Tex and the others, who know who you are, you are a godsend in terms of support, accurate and and competent information, and understanding that no one that doesn't have these issues (diagnosed or otherwise) would understand and never fully appreciate. Please know that although we may meet only through the ether, we are connected without a doubt and thru an understanding that only being there can be the result.

Take care.

Robin B.

[rbks321]

You're still waiting for confirmation from GI that you have MC? What is he/she treating you for? Did you have colonoscopy with biopsy?

Regarding the Imodium. Are you taking Imodium Multi-Symptom or just regular Imodium? I ask because when I first started taking Imodium (sometime last summer) I purchased the Multi-Symptom or Advanced kind. Then GI gave me a ton of samples of regular Imodium. I appreciated it, but when I took it I still had other symptoms. It helped with the D but not with pain, gurgling, gas, and all that other stuff. The Multi-Symtom works better for me. Just a thought.

Sorry to hear that you are struggling with weight loss, no appetite, and issues at work. My GI wrote me a lovely letter to give to my employer explaining why I need a desk near a bathroom. He obviously has no idea what type of work I do, as I am at my office maybe three hours a week. I see clients in their home or work from home (doing paperwork or making phone calls).

Hope you are feeling better soon. I just started Entocort over the weekend, and I too was feeling okay for a few days and not so much anymore. I hate the thought of this not working! I'll be honest, this GF diet is no fun at all. Too much planning and thinking ahead. I'm sure it will get easier as time goes by, but in the meantime......

-Rebecca

[ant]

Dear Robin B

The Entocort (plus diet) worked for me. It took a couple of weeks to settle me down. Coming off it is more difficult (9 months on I am trying to get down to 1 pill a day....maybe getting there..... but let's see....bit like trying to land a light aircraft with strong cross winds )

I have never had a loss of appetite so do not know how to answer that one, although I have lost weight. That happened before I started medication and diet - I now eat a lot of rice, meat and fish.

all the best, love ant.[/i]

[wonderwoman]

Seabare, you said it well when you wrote the following, I could not have said it better myself.

To Tex and the others, who know who you are, you are a godsend in terms of support, accurate and and competent information, and understanding that no one that doesn't have these issues (diagnosed or otherwise) would understand and never fully appreciate. Please know that although we may meet only through the ether, we are connected without a doubt and thru an understanding that only being there can be the result.

All I can add is God bless each one of you.

[Dee]

My! You sure have been thru the wringer, haven't you!
I wouldn't give up on the Entocort yet! My only suggestion, at this point, is to stop all dairy and see if those aliens in your colon, quiet down!!! In my experience with the Entocort, the only thing that has ever over ridden the med is dairy!
And I'm sure that somewhere along the line I may have been glutened, but have never had an adverse reaction. Not with soy, either.
Three weeks isn't really enough time to give up on the Entocort. You have alot of inflammation going on and it will take some longer for the Entocort to get that inflammation down.
I'm curious about your GI doc not giving you a specific diagnosis of MC?????? It's not a guessing game if he took biopsies during your colonoscopy.
I think it depends on the individual as far as weight loss or gain. I'm very small boned and have never weighed over 130# in my life, but I did lose initially when I started the GF diet and add the overwhelmness of what the heck I could eat. Now, I cook & bake like there is no tomorrow! So, I've put on some weight.
I also think that the anxiety of dealing with the nasty MC doesn't help some, when it comes to loss of appetite. You know that whatever you put in your mouth is not going to last long. I remember my PCP telling me, even if I have to run to the bathroom, keep eating.
I have everything fine tuned now, but it will take your will and determination to get you on the right track.
Alot of us here can help you with that.

Dee~~

[tex]

Hi Robin,

Congratulations on having a GI doc who is actually concerned enough to call - that's definitely a good sign.

The loud gurgling noises are unique to celiac disease, and the IBDs, and it's probably due to the movement of gasses caused by fermentation, as a result of poor digestion, due to the inflammation. It's evidence that your small intestine is also inflamed. As your inflammation is better controlled, and your digestion improves, that symptom will slowly go away. It's an interesting phenomenon, though, and it allows you to immediately spot another MC'er even though he or she might be on the other side of the room.

Be aware that some people are not able to achieve remission by means of Entocort alone, and they find it necessary to restrict their diet, also, in order to get control of their symptoms. I noticed in one of your posts that you are now attempting the GF diet. Eiminating gluten from the diet, (100%), should soon eliminate those gurgling noises, since IMO, it is the primary cause of that issue. If it doesn't, you may have to avoid all dairy products, also, (as Dee suggested), since dairy is probably the second most important cause. (Note that Dee considers dairy to be the primary cause - we are all different in our responses to food intolerances, and to medications, also, and so our opinions differ, but what counts, is what works for you). It also helps to avoid fiber, found in many fruits, and vegetables. Lettuce is the worst offender, and almost all of us have found that it can not only prolong a reaction, but even trigger a flare, if the gut has not yet sufficiently healed. As a rule of thumb, if you are still having the gurgling noises after, say, 6 weeks of Entocort treatment, you will probably need more dietary restrictions, in order to get all your symptoms under control.

It's common, with MC, to not want to eat, for fear that it will just result in more D, and bland foods are definitely the order of the day, since spicy foods tend to just make a flare worse. Corticosteroids are notorious for causing weight gain, and budesonide is no exception. However, since it is encapsulated with an enteric coating, in Entocort EC, only about 10 to 15 % of the budesonide in Entocort EC, ever enters the bloodstream. That's why Entocort EC has a greatly reduced risk of side effects, compared with the other corticosteroids, and it's why few people gain weight while taking it. The GF diet, in general, (believe it or not), is a high calorie diet, compared with conventional diets. That's because GF flours, (and GF processed foods in general), do not have lo-cal ingredients, and their use typically results in a higher calorie intake, on the average. However, you have to eat food, in order to gain weight. The corticosteroids cause weight gain, by increasing the appetite, so the good news is that your lack of appetite indicates that you have a very low systemic absorption of the budesonide in Entocort. The bad news, of course, is that with a poor appetite, it's difficult to gain weight, or even maintain weight.

Whenever I've been low on weight, (whether due to D from MC, or any other cause), I've always forced myself to eat more than I wanted, in order to restore a "cushion", in case I needed it at some point in the future. Of course, that isn't really possible, when we are in the depths of a flare, especially if nausea is a part of it. I've always had to wait at least until the nausea was gone, and then I try to eat more than I need. Of course, I was lucky, in that my symptoms alternated between D and C. Those who have continuous D, have a much tougher time, since they rarely have periods where they feel "normal".

Entocort is only labeled for the IBDs, so if your doctor has prescribed it for you, he must surely suspect that you have MC, or some other IBD. Of course, MC is an off label use, (it's only labeled for Crohn's and UC - MC is considered to be too rare to justify the expenses required to get FDA approval), so it's not impossible that he could be writing an off label prescription for IBS treatment, but that would be a rather inappropriate use, since technically, IBS does not involve inflammation, and the primary function of Entocort, is to suppress inflammation in the ileum and the colon.

I agree with Dee, though - diagnosis of MC, by means of examining biopsy samples under a microscope, is a defined process, not an arbitrary decision. It involves counting the number of lymphocytes that are present in the epithelia of the colon, and if they exceed the normal number of 15 to 20, within a prescribed area of high power magnification, then by definition, the patient has lymphocytic colitis. The thickness of the collagen bands, in the sub-epithelia, is also measured, and if the bands are 2 or 3 times the normal thickness, then the patient has collagenous colitis. If both markers are present, (both increased lymphocytic infiltration, and increased collagen layer thickness), then the diagnosis is usually referred to as simply microscopic colitis. Those diagnostic criteria are not arbitrary, and any pathologist worth his salt, should recognize them. That's why it seems strange that your GI doc seems unwilling or unable to pinpoint your diagnosis. Of course, there are at least 3 or 4 other types of MC, such as large-cell LC, paucicellular LC, asymptomatic LC, etc., but those are pretty rare, (the treatment is the same, however, regardless of the particular type).

Thank you so much for the kind words, (and you too, Charlotte) - you made me all misty-eyed.

Tex

[Bifcus16]

Hi Robin,

Welcome!!

You might consider asking your Doctor for a copy of your results, including biopsy results. If you can get that it makes it easier for you to read it later.

Those tummy grumbles get embarrassing, don't they? I found it was the gas escaping as I started to heal more that was an even worse problem. Phewww


Lyn

[Pat]

Robin,

My gas and gurgling went completely away when I stopped eating fruit and all other fructose. I still had the D but no gas and gurgling. I have to be very careful with vegetables and I am different from most on here as I need gluten to firm things up. Hope this helps.

Pat

[artie]

Robin, so nice to hear that you also firm up with gluten and stay away from fruit and veggies. I sometimes feel that I am the odd man out on this site.

Staying off flour products just about kills me, as I spend alll day on the toilet (and nights too).

So when things get really bad, I make my own bread and replace 1 cup flour with 1 cup gluten - expensive but it works like a ......

Artie

[Bifcus16]

Artie and Pat,

Could it be that you are relying on the constipation part of the MC cycle to firm things up? If you are getting D due to something else - another intolerance that you normally don't have in large quantities- then the C phase of MC might have the effect you mention.

Just a thought.

Lyn

[artie]

There's a constipation cycle?

Where, when?

Never in 7 years in my case.

Artie

[tex]

Artie,

Some of us have alternating symptoms, D and C, (including myself - when I was reacting, I usually cycled about every ten days to two weeks - it varied). It's also possible to cycle between D and Normans, (normal BMs), or C and Normans. A few people have continuous C, when they are reacting, but few people with C ever pursue a diagnosis, so most GI docs don't even know that these variations exist. In fact, most GI docs believe that D is the only way that MC ever presents.

Most likely, if they try to pursue a diagnosis, most people who experience C, or a form of alternating C, are diagnosed as having IBS, because the GI docs never bother to do a colonoscopy with biopsies, since they don't associate C with MC - that's off their radar.

Tex

[seabare]

Well, the lack of definitive diagnosis seems to stem from the fact that in the last 15 yeras I have had at least 3 colonoscopies and a couple of flex sigs. Back in 1989 the biopsis were less that definative and the current GI doesn't seem to think there is much to be learned from new scopes.

Maybe yes, maybe no. My bottom line is that whater I do have acts just like like MC, LC or Chrons w/o blood.

I have pushed up my appts. from June to mid-April--mainly due to upper GI and nausea and further weight loss (I am small--4/9" and now only 70#). Soooo tired.

If the gurgling and nausea are not out of the norm, what are you all using to control this? I try to describe to my husband and kids that is like living with the flu 24/7...any ideas on to pacifiy the demon upper GI monstor?? mmha
what coutoutEntorcort seems Wamted t gpigfor lower colon but not so much the upper area...

Anyhow, take care everone.

Robin

[Jan]

Lyn,

There are a few of us that are not gluten sensitive. I am one of them. I had the Entrolab tests done and some out with a 12 when it is suppose to be lower than 10. I realize that any number oover 10 is suppose to indicate gluten sensitivity. I totally took it out of my diet (kicking and screaming by the way). I actually got worse and that is when I found out I am allergic to oats. I don't know if that is what causes the results or not. I have no problem with wheat products and feel lousy if I don't have some wheat every day. It may be a slice of bread, some pasta or a few crackers - not a whole lot. I also have to be careful with too much fruit. Some of it might be caused by the higher fiber, but if I eat a normal serving it causes problems. A small portion once in a while is okay.

Jan

[tex]

Jan,

FWIW, the Enterolab tests are very specific. They only detect IgA antibodies to the Alpha gliadin peptide in wheat gluten. Their tests will not detect antibodies to secalin, hordein, or avenin, which are the respective equivalent prolamins that we react to, in rye, barley, and oats.

I have no idea what the odds might be, of receiving a false positive result. I'm sure they're very low, but certainly not zero.

Tex