New Member - Frustrated Wife

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BarbaraH
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Joined: Sun Jan 08, 2012 5:27 pm
Location: Memphis, TN

New Member - Frustrated Wife

Post by BarbaraH »

My name is Barbara and my husband, Jerry, was diagnosed with LC a few months ago. He's currently taking Entocort and Asacol HD. Flagyl did help initially but after being put back on it recently, it irritated the condition. He is seeing a gastroenterologist here in Memphis.

Jerry is currently living mostly on soup and Gatorade type drinks. Plain and vanilla flavored Dannon yogurt seem to be agreeable. The other day he tried a baked potato with yogurt instead of sour cream as dairy is currently his enemy. He's been trying different foods but without much success.

One thing that's really annoying him is that he finds that as soon as he lays down, everything kicks into high gear and he's running to the bathroom. Luckily it's just across the hall from the bedroom but even then, he doesn't always make it in time. Any ideas why that position causes problems?

I'm really glad to have found this group and plan to spend a lot of time reading and am trying to get him to join and read also.

Barb :cat:
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Sharaine
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Post by Sharaine »

Hi Barb,

Welcome to our group. We're glad you are here and hope that Jerry will join us too someday.

You mentioned soup ... Is it soup with gluten or cream? For example, vegetable soup often has pasta which is made of flour that contains gluten. And creamy soups have dairy that contain both casein (a protein in milk products) and lactose. Generally it's the casein that does us in, but lactose surely gets more attention from the general public.

If Jerry loves soup, I'd encourage you (or him, if he cooks) to make chicken soup from scratch so that you can be certain there is no gluten or dairy involved.

Yogurt is still considered dairy, so it is suspect with regard to consuming it in any fashion. If dairy bothers Jerry, yogurt needs to be eliminated, too.

Tex will have more to add. He's one of our most informed members and the host of this website. I'm sure he, and others, will chime in.

One last note. Some members are having a lot of luck with paleo diet; eating mostly meat. Jerry might consider this and see if it helps. Also, if he eats salads, make sure he does NOT eat iceberg lettuce. If he absolutely has to have salad, try romaine lettuce or spinach. Better yet, eat well cooked veggies that are almost mushy as they are easier for our bodies to digest.

Good luck! :smile:
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tex
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Post by tex »

Hi Barb,

Welcome to our internet family. You're husband is lucky to have you taking such an active role on his behalf. Good for you. A lot of spouses are not nearly so supportive, (especially when the wife is the one with the diagnosis).

If he has been taking Entocort for 2 or 3 months, then something is obviously wrong, because the Entocort should have made a huge difference by now. There are 4 possibilities:

1. He is one of the 30 to 35% who either are not helped by budesonide, (the active ingredient in Entocort), or who are intolerant of it, and he is also deriving no benefit from the Asacol.

2. The Asacol is causing his immune system to produce leukotrienes, which is contributing to the inflammation in his intestines - anyone who is sensitive to NSAIDs is also almost always sensitive to mesalamine, (the active ingredient in Asacol). NSAIDS is a common trigger for LC. If he is sensitive to Asacol, then it will undo any good that the Entocort might do without it. IMO, doctors who prescribe the two drugs together, don't understand how to treat MC, they don't understand the risks of taking the two drugs together, and they don't understand statistical analysis, (which would tell them that using two such drugs together, leads to reduced odds of success, not improved odds, as they mistakenly believe).

3. He's sensitive to the lactose in Asacol, (which is true for many of us here), and that is making his reaction worse.

4. His diet still includes food sensitivities that cause autoimmune reactions resulting in the generation of inflammation in his intestines.

Sharaine is right on target, of course, with her comments about various foods. FYI, most of us here are sensitive to gluten, casein, (the primary protein in all dairy products - including yogurt, of course), and about half of us are sensitive to soy and all legumes. Some have additional food-sensitivities.

Reclining never seemed to shift my gut into overdrive, so I can't help with that question. I can assure you, (and him), though, that he's most definitely not the only one here to fail to make it to the bathroom in time, because of this disease - been there, done that, and so have most of us, at one time or another. I'll guarantee that he can resolve that problem if he takes advantage of the information available on this board, because not making it to the bathroom in time is definitely one of the high-priority items that make this disease so debilitating, and so humbling, and that symptom is probably not even on the radar of most GI docs.

I'm not a doctor, so I can't advise him to stop taking the Asacol, but if I were in his shoes, and I wanted to stop the D, I would stop taking the Asacol, immediately, because it is totally redundant for anyone taking Entocort, and all that taking it can possibly accomplish, is to prevent the Entocort from working. So why take it. :shrug:

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
BarbaraH
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Joined: Sun Jan 08, 2012 5:27 pm
Location: Memphis, TN

Post by BarbaraH »

Thank you for the quick reply.

When all this started he was going with plain chicken broth, graduated to include beef broth and now things like chicken and rice or chicken noodle. Cream soups have been avoided. Golden mushroom was tried but failed. I have made chicken soup and a ground beef stew, both of which were tolerated. BTW, I know the beef was very low fat because I gound it myself. He's also done OK with some (dry) cereals like Cinnamon Life. He loves salads and is craving one. My reply when he thought about having one was, "Are you out of your mind?".

He's been on the Entocort for about a month now and the Asacol longer. He should have been on the Entocort longer but had run out and we're ordering it from Canada and it takes about 3 weeks on average to arrive. The doctor has been supplying the Asacol because it's not covered by insurance (Medicare). He's going to try not taking the Asacol and see how that does. No idea if he has a problem with NSAIDs because he's never taken them. In the meantime, I'm going to pick up some Culterelle (sp) tonight when I go to get my meds.

Tex, you're right. He is VERY lucky to have me and, yes, he does know it. LOL. Sheraine, I'm the cook and primary shopper.

Oh, I forgot to mention, he also has Type II Diabetes. Fun, fun, fun.

Barb :cat: (loving that little kitty)
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Robin
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Post by Robin »

Hi Barb,

Welcome to the PP family! Your husband is a very lucky man to have you!!! When you are having a flare of MC its hard enough to take of oneself let alone the family. At least he has you to shop and cook for him which will let him rest so he can get back to a normal life.

Like your husband, I too have been on Asacol and Entocort. I have to say that even though I had started changing my diet I was still having problems with D. My doctor first put me on Asacol and it helped very very little ( I didn't have the urgency anymore but still had D). Then he decided to put me on Entocort while I was still on Asacol. It helped but something was still not right. I decided to take myself off the Asacol (because of everything I read here) and OMG with in a week I felt 99 percent better. Now remember all of this time I was on a GF, SF and DF diet. I am still taking Entocort and I do follow the Paleo diet and I can tell you that from even just a month ago I feel amazing. It as been a very long road to get here and I really would not be where I am if it wasn't for the people here.

As for your husband laying down and having the urgency to go to the bathroom, I had that too! I thought I would have to sleep upright for the rest of my life. But Tex (I am in love with that man, he is a huge mountain of information and is compassionate, caring and is always around to have a question answered) gave me some advise when lying down always try to lay on my left side. I forgot the reasoning behind it, but again it worked!!

IMO, I think your husband should try and go gluten and dairy free (including yogurt)right now, at least till he stops with the D. Sometime in the future he may want to consider taking the Enterolab test, is a fecal test that test for food sensitives. That really helped me tweak a little more of my diet. Your husband should be eating chicken soup that you make without any pasta or rice in it, probably just stay with chicken and carrots. Applesauce was a huge help for me in the beginning. He needs to stay clear of ALL raw fruits and vegetables right now. Also, try and not let him have any sugar right now either, try honey or maple syrup. Give him herb teas with honey, make it cold or hot however he prefers. Gatorade has LOTS of sugar in it which is not good for the gut! Water infused with fruits is what I drink most of the time now (Polly another mountain of information...love her too) gave me that tip. The funny thing is that my family is always drinking it now too. I have to make it in a 2 gallon jug!

I know this is probably VERY overwhelming for you and your husband. Take baby steps! There is a light at the end of this long tunnel. Keep things very simple in the beginning and you will both be ok.

Again welcome!
Robin
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tex
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Post by tex »

Barb,

I'm sure you're well aware of the tricky blood sugar issues that can result from the use of a corticosteroid by someone with diabetes. It's believed that the blood sugar increase is due to a chromium depletion, caused by the corticosteroid. Since only about 19%, at most, of the budesonide is absorbed into the bloodstream, the risk of blood sugar issues is relatively low with Entocort. If it should happen, though, be aware that he can take chromium picolinate to help protect his pancreas, and to prevent blood sugar excursions. I have no idea whether or not this concept is embraced by mainstream medicine, though. If it's not, he might have to consult with a naturopath, if he wanted to pursue that line of treatment.

http://www.ncbi.nlm.nih.gov/pubmed/10229312

That article was published about 13 years ago, and I haven't seen any significant research done since then, (but of course, just because I haven't seen it doesn't mean that it doesn't exist - maybe I just didn't look in the right places).

Incidentally, you might be interested in this past thread concerning the treatment of diabetes by diet.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=13997

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Martha
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Post by Martha »

Welcome, Barb.

You are wonderful to be so involved in helping your husband find answers and change his diet. Family support is so important.

I don't have any insights that others haven't already given, but I just wanted to welcome you to the PP!

Love,
Martha
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BarbaraH
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Joined: Sun Jan 08, 2012 5:27 pm
Location: Memphis, TN

Post by BarbaraH »

Being chief cook and bottle washer, and complaint department, I have to be involved. I'm also beating him over the head to get more involved doing his own research on this condition. Like reading this message board, which he did promise to do.

Barb :cat:
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