I'm a very discouraged girl this morning

[Beth]

Hi everyone,

Just got on the scale, and I've lost even more weight. I have NEVER weighed this little in my entire adult life. And I really, really don't want to keep losing more weight. Still eating lots of fish and boiled eggs, cooked carrots, spinach, zucchini, potatoes, sometimes some buckwheat, and lots of bananas. I usually add some flax seed oil to my veggies. The problem is that this morning, for instance, I'm scared to eat. I went to bed last night with horrible cramping. And yesterday I almost had an accident in public. I literally had to run to the bathroom. I did eat an apple last night because I had a headache and wanted to see if it would help the Tylenol work better. I'm wondering if that was too much for my digestive system. I'm still taking 3 entocort/day, but I really don't think it's helping. I don't know what to do. Of course, I've also been under enormous stress in other areas of my life, so I know that's not helping any. I don't have a GI right now because I've had such bad experiences with them. Do you think it's time to see one? And what would a GI do, anyway, that I'm not already doing?

Thanks,
Beth

[kate_ce1995]

Have you tried high fat food? Like avacado? What does your GP think of the weight loss?

Katy

[Beth]

Yeah, I forgot to mention that. I am eating an avocado every day. Nuts and sesame butter don't seem to do well in my digestive system at all. I haven't talked to my GP about the weight loss, but that's because I don't really feel like she's very useful. Am in the process of trying to find a GI. Any other suggestions would be very helpful.

[tex]

Hi Beth,

Sorry to read that you're continuing to have problems. MC can be a very frustrating disease, especially for some individuals. I have a very strong suspicion that those of us who suffer from severe abdominal pains, and/or weight loss problems, have other significant issues, in addition to MC, (such as celiac disease, or SIBO, for example). Abdominal pain is not listed as a symptom of MC, in most official descriptions of the syndrome.

MC does however, cause disruptions in motility, which can predispose one to SIBO, (Small Intestine Bacterial Overgrowth), and any form of blockage, (even something like chronic constipation), can certainly set the stage for SIBO.

To answer your question about visiting a GI doc: to be honest, I would be surprised if you were able to find a GI doc who would be much help.

As far as gaining weight is concerned, I don't remember all your intolerances, but carbs are what put the weight on livestock in feedlot settings. Corn is the primary feed used to put weight on cattle, hogs, and poultry, (together with milo). When I needed to gain weght back, if meat and potatoes wouldn't do it fast enough to suit me, I only had to eat a bunch of corn chips regularly, to gain weight.

Hope you can find some solutions soon.

Wayne

P S It's possible to double the dosage rate of Entocort, which will increase the normal success rate of about 50 to 60%, to about 75%, without any significant increase in the risk of adverse effects. It's not labeled for that rate, but I've seen published test results that show significantly increased remission rates, with the higher dosage rate. The pain suggests something other than MC, however, so I suspect that SIBO may be an issue, and Entocort may not be able to handle that problem.

[Beth]

Hi Wayne,

Thanks so much for your post. Actually, the abdominal pains aren't really an issue if I'm eating a fairly plain diet, such as the one I outlined above. I think my gut is too inflamed for things like raw apples right now, and that's probably what caused the pain last night. Normally, though, ab pain isn't part of my symptoms. And the weight loss is coming from the fact that I'm eating significantly less - not because I'm trying to, but just because the things I feel I can eat are much lower in calories. The only carbs I'm eating are bananas, potatoes and carrots. I've been afraid to try corn, but I suppose it wouldn't hurt (at least in the long run). Maybe I should go back on the prednisone? And that's an interesting point about the increased dose in entocort. If you know of some studies that have been doing on this, would you mind posting them?

Thanks so much,
Beth

[mle_ii]

For myself, I've finally stopped losing weight at 141 lbs or so, but I'm having difficulty gaining weight. But I shouldn't all of my hormones seem to be geared for gaining it, I'm eating plenty of calories, so I'm not sure what else is up. I'm thinking perhaps if I start exercising more and lifting weights again perhaps I might gain some muscle weight. Supposedly for my height and frame size I'm within range so who really knows.

Mike

[tex]

Hi Beth,

I used to have a link to a research report that described the results of double dose trials, but I have changed computers a couple of times since then, and I'm not sure I can find it again. I can't remember the key words I used to find it on the net. I'll look for it, though.

Wayne

P S Potatoes and sweet potatoes, should be helpful for weight gains, too, and they are probably easier on the GI tract than corn.

[tex]

Hi Beth,

Well, I haven't been able to find the site that reported on the research trial that I had in mind. That's a shame, because it was a very good article. I'll keep looking, whenever I come up with an idea for a keyword that might work

I did find a couple of other sites, though, that might be of interest. I was able to access this first one without logging in, when I first found it, but the second time I tried to access it, I had to log in, (I already had an account there). Note the last paragraph, titled, Tolerability of Budesonide, for information on longterm risks. Considering that this was a 5-year project, I'm amazed that only 3% of the patients experienced any significant problems, and apparently, most of those problems were unrelated to treatment.

http://www.medscape.com/viewarticle/460040_6

I find the information in this second article to be extremely interesting, since it describes how IBD treatment failure with budesonide is associated with a certain gene, HLA-DR 8. IOW, those of us who seem unresponsive to budesonide, may have this particular gene, which interferes with the action of budesonide. Certain genes make us susceptible to MC in the first place, and apparently certain other genes make us unresponsive to certain treatments. I'm learning a lot, here.

http://www.eurojgh.com/pt/re/ejgh/abstr ... 44!8091!-1

I hope these provide some degree of help. I'll keep looking for the other article.

Wayne

[bobh]

... It's possible to double the dosage rate of Entocort, which will increase the normal success rate of about 50 to 60%, to about 75%, without any significant increase in the risk of adverse effects.

Yep. That's what the pharmacist told me as well, to increase it as needed.

I am confident you will get to a remission. I was "hopeless" and had world class gas and "D" for a looong time. The Entocort regimine helped me, and I am starting my 5th month of essentially normal formed BM. You will get there.

Beth, have you ever had your adrenals tested? I am talking about a 24 hour saliva test (not blood). You do 4 lab samples starting in the morning, then noon, then mid-afternoon, then just before bed.

Weight loss can be due to failing adrenals, it happened to me - just curious if that is a factor for you. I recently learned that my adrenals are barely creating any Cortisol. That scenario makes life's stress result in abnormally high levels of anxiety, and a low level of Cortisol also screws up the ability for the thyroid hormones to enter the cells.

This site has a link to a place that will test your adrenals, thyroid, and antibodies to thyroid (Hashimotos, which I have) for $141 without a prescription. I find it liberating to do my own labs, do my own research. Do the one called "canary club", the lab they use is Diagnos-Tec located in Washington State.
http://www.stopthethyroidmadness.com/re ... d-labwork/

[JJ]

Hey you guys...come on over to my house...I am an expert at weight gain! hahahaha....I've got my own little feed lot going...just ask the kids that live with me...they are now both on diets. One has gained 8 pounds since she moved in! Seriously...hope things get better. JJ

[Beth]

Hi Bob,

That's interesting about your question about adrenal fatigue - yes, I have been tested, and I definitely have it! When I was tested two months ago, my cortisol levels were eight times lower in the morning than what they should be. I was amazed - finally, after so many years, I have an explanation for why I have not been able to wake up in the morning. For years, until about a month ago, I was going to bed at 3 am and getting up at 11 am - probably to adjust for these low cortisol levels. I remember in college, even in my 11 am classes, I literally could not stay awake. I could never figure it out - until recently. My naturopath has put me on a number of supplements, and I do think they're helping (5HTP, licorice root, kavinace, among others). I had my neurotransmitters tested at the same time, and many of them were depleted, too, so some of the supplements are addressing that particular issue. But, because of some trauma from my growing up, I think I've had adrenal fatigue for a very long time. In other words, I don't think the weight loss is associated with it. I just think that my gut is so imflammed right now that I can't eat very much, and that's where the weight loss is coming from. I'm not emaciated - yet. I just want to stop the weight loss. But, Mike, maybe I'll plateau soon, too. Hopefully!

Wayne - thanks so much for the link on those articles. I'll definitely take a look at them.

Best,
Beth

[bobh]

...about adrenal fatigue - yes, I have been tested, and I definitely have it! When I was tested two months ago, my Cortisol levels were eight times lower in the morning than what they should be. ... My naturopath has put me on a number of supplements, and I do think they're helping (5HTP, licorice root, kavinace, among others).

Gotcha. I also believe I had adrenal problems for years before being diagnosed - and I saw about 6 naturopaths over a 20 year period. Took tons of glandulars, etc etc and no lasting result.

Your adrenals sound as bad as mine, the Cortisol levels are supposed to be highest in the morning and then taper down. I am starting to do better now that I am following the regimen I mentioned before. I am 100% certain that I need to replace what the body is no longer producing, I am bordering on Addison's disease as my adrenals just aren't producing enough Cortisol.

The book "Fatigued to Fantastic" by Teitelbaum advocates taking the prescription Cortef as opposed to natural supplements - and the links below supoort that as well. It is basically what the body should be producing, but isn't. It is not like Prednisone, not hard on the liver to process. There is no reason to avoid it if your body's adrenals aren't doing their job. Dosing is important, the site below has advice on spreading it out through the day, Teitelbaum's book says the same thing on pg 217. Previous Dr's mentioned nothing of this to me, I would take it only in the morning, get some energy, then crash & burn.

I also have Hashimoto's thyroid, and previous attempts to take thyroid pushed my adrenals into crisis (but the Dr's didn't know that - really amazing how few of them understand the relationship of adrenals to thyroid). It is very, very likely that with your low Cortisol levels, you aren't getting T-3 into the cells.

One of the functions of Cortisol is to control inflammation in the body. Your Entocort should be helping in the bowels... but I suspect your efforts are having cold water poured on them by an additional issue which is affecting more than just the bowels. I say that because I have been living with the same issue. I hope I am wrong, but you may want to check it out. If this strikes a chord with you, then focus on this site for MC and check out that other site for the Adrenal-Thyroid issues. http://www.stopthethyroidmadness.com/ Here's the link to the forums http://www.stopthethyroidmadness.com/community/