After giving Entocort a trial for a little more than three weeks, had to withdraw from taking it any longer. Not only did I have all day daily headaches, I was getting severe muscle cramping in the calves of my legs. The good news is, I don't know if it is because of the short dose of Entocort or the total change in my diet, GF, DF, SF, and no fruits, the "D" has almost totally subsided. The GI doc did offer to let me try Mesalazine and/or Lomotil. When I looked up Mesalazine the side effects were gruesome. Plus you have to have monthly blood test while on the drug. Granted, Lomotil is only for the treatment of the "D", but I am wondering how well it will work when I do have a flare. Any ideas on these two meds? I will say, even without the daily "D", I still have several periods of time that I feel and hear all of the grumbling and gurgling that goes on in my intestinal tract plus the bloating and gas. Grr, does this ever end?
Bonnie
Questions about new medications
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Hi Bonnie,
A fair number of members here are unable to use Entocort because of various neurological symptoms (including the ones you named). It takes many months and sometimes years (in some cases) for the damage to the intestines caused by gluten to heal. If you faithfully continue to follow the diet, as time goes by, the symptoms will return less often, and they will be less significant as healing progresses.
Many members here find that Imodium (an over-the-counter anti-diarrheal that works similarly to Lomotil), works just as well for them as Imodium, and most of us have good results when using it. As you say, it won't stop any inflammation, but it can help to "settle things down" for a while if our MC is active and we absolutely must take a trip, or leave the house for any other reason. For most of us, it rarely causes any side effects (unless we take too much of it, in which case it can cause constipation).
Some of the symptoms you are still having might be due to fiber, if you are still eating vegetables. While we're recovering, most of us can only tolerate small amounts of fiber, and vegetables that are overcooked (no raw vegetables). Iceburg lettuce, tomatoes, onions, and peppers, for example, are usually off limits until after we heal. Most of us also have to really limit any sugar in our food while we are healing. Sugar that doesn't digest properly tends to ferment, causing bloating, gas, etc.
If your symptoms continue, you might keep an eye on eggs, to see if they might be causing symptoms, because a fair number of us are sensitive to the protein in egg whites, also.
Yes, it can eventually end, but healing takes a while, and we always have to be vigilant about avoiding the foods that cause us to react. Please keep us posted on your progress, and never hesitate to ask any questions that might arise.
Tex
A fair number of members here are unable to use Entocort because of various neurological symptoms (including the ones you named). It takes many months and sometimes years (in some cases) for the damage to the intestines caused by gluten to heal. If you faithfully continue to follow the diet, as time goes by, the symptoms will return less often, and they will be less significant as healing progresses.
Many members here find that Imodium (an over-the-counter anti-diarrheal that works similarly to Lomotil), works just as well for them as Imodium, and most of us have good results when using it. As you say, it won't stop any inflammation, but it can help to "settle things down" for a while if our MC is active and we absolutely must take a trip, or leave the house for any other reason. For most of us, it rarely causes any side effects (unless we take too much of it, in which case it can cause constipation).
Some of the symptoms you are still having might be due to fiber, if you are still eating vegetables. While we're recovering, most of us can only tolerate small amounts of fiber, and vegetables that are overcooked (no raw vegetables). Iceburg lettuce, tomatoes, onions, and peppers, for example, are usually off limits until after we heal. Most of us also have to really limit any sugar in our food while we are healing. Sugar that doesn't digest properly tends to ferment, causing bloating, gas, etc.
If your symptoms continue, you might keep an eye on eggs, to see if they might be causing symptoms, because a fair number of us are sensitive to the protein in egg whites, also.
Yes, it can eventually end, but healing takes a while, and we always have to be vigilant about avoiding the foods that cause us to react. Please keep us posted on your progress, and never hesitate to ask any questions that might arise.
Tex
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.
Hi Bonnie,
It sounds like you are making progress. In addition to what Tex said I found the occasional pepto bismol to be helpful. I was an Entocort user and had fairly significant gas for 3 months after last tablet and had gurgling after every meal for 6 months after last tablet. I think as your gut heals the gas and the gurgling finally disappears.
Regards, Brandy
It sounds like you are making progress. In addition to what Tex said I found the occasional pepto bismol to be helpful. I was an Entocort user and had fairly significant gas for 3 months after last tablet and had gurgling after every meal for 6 months after last tablet. I think as your gut heals the gas and the gurgling finally disappears.
Regards, Brandy
Hi Tex,
I didn't realize the problems with tomatoes, I will definitely add them as non allowed food. I am already avoiding fresh vegetables and fruits. I just wonder if I am getting enough nutrition with all of these choices I am having to make. I will continue to use the Loperamide (Imodium) while I am having all this gurgling issue to see if it will calm this down.
I don't know what I would do without this web site, all of you have been so kind with all of the information. It just makes it kind of tough trying to decide what I can or cannot eat. I have so many foods on my do not eat list. Before I go to a restaurant, I look at their menu to see if there is anything I can eat. Tough!
Bonnie
I didn't realize the problems with tomatoes, I will definitely add them as non allowed food. I am already avoiding fresh vegetables and fruits. I just wonder if I am getting enough nutrition with all of these choices I am having to make. I will continue to use the Loperamide (Imodium) while I am having all this gurgling issue to see if it will calm this down.
I don't know what I would do without this web site, all of you have been so kind with all of the information. It just makes it kind of tough trying to decide what I can or cannot eat. I have so many foods on my do not eat list. Before I go to a restaurant, I look at their menu to see if there is anything I can eat. Tough!
Bonnie
BB