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Linda wrote:For me it was Asacol, first thing, and when I went back to the doctor 2 weeks later and told him I was way worse he said I was one of the "one in 10,000 people" who had a bad reaction to it,
You know, it's interesting that many/most doctors say that, (or something similar), anytime we tell them that we had a bad reaction to a drug that they prescribed. There are probably several hundred members here who have tried Asacol, and of that number, (judging from past posts), probably at least 20 to 30% of them have had an adverse reaction to it. That's a far cry from 1 in 10,000. Obviously, mathematics and/or statistical analysis are not strong suits for those doctors.
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.
Rich, Wow! That is tough that Pepto can't bring you any relief! Yes, I am doing well on the Entocort and one Questran at night .. don't even need to use pepto anymore.
My only problems arise when I take magnesium ( which I HAVE to take somehow!) I am going to ask my doc if there is such a thing as magnesium shots, because taking it orally just isn't possible for me. It really gives me D.
I know even the Entocort wasn't doing it for you, and you were looking at other options. So what are you taking now, or when do you go back to see your doctor?
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
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.
Linda, Questran gave me terrible D so did magnesium. The questran was given to me second.. when high fiber was a problem for me the GI insisted I try Questran.. which like fiber was a disaster. I don't have high cholesterol.. so that was not the reason he gave it to me.. he said it was for the D. Just wondering why you are taking Questran and magnesium when both can cause D????
grannyh
I am still on Entocort. I also take some Imodium which helps but is not a fix. And for the pain, a half a valium takes the edge off. I do reach for a Bentyl at times, but it doesn't seem to have the effect it used to. I have clearly evolved beyond a mere "IBS" diagnosis (which I thought was garbage anyways).
My plan is to slowly get off Entocort, consider Asacol, but see how I do just working the diet and letting the drugs purge from my system. And if I get in a real bind on the road, I have Lomotil. That shuts me down hard for a day but the next day is pretty bad. I have also started drinking coconut milk as you know (I like it), and am taking Olive Oil pills (easy to pack).
I know this doesn't sound like the healthiest plan, but I can't afford to be "unstable" in the field. That just can't happen. And the thought of losing control or getting sick while traveling really bothers me anymore (because that happened a couple months ago, twice). I also don't want to traumatize my bowels any more than I have to because I have strange motility issues that almost feel nerve related (I think this because I also have IC type bladder issues that flare).
The ultimate solution for me is to slow down and stop working so hard, and to get a normal, consisten routine back. If I can go another 4 years or so, I will either hang it up altogether or do other things that are more amenable to my GI. I see engineers in the field who are in their 60's and 70's. I can safely say that I will not be one of them. If I am still working when I turn 50, something went very wrong with my plan. So there it is :)
Regards,
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Oh, and Questran isn't my friend either. It stopped me up like concrete or caused the opposite effect. The pain in my intestines while on Questran was unbearable. Perhaps at a much lighter does things would be OK, but it seems to be just as detrimental as fiber to me.
Beware of Questran as you drink it. It removes the enamel from your teeth. So be sure to brush your teeth promptly after you drink it. Also, you may want to consider Colestid as it is Questran in a pill. But if you take that, be sure to drink a lot of water too.
"It's not what I believe. It's what I can prove." - A Few Good Men
The first thing my GI did was put me on Prednisone and Asacol (later changed to Entocort and Asacol). Both the Pred and Entocort were to be short term. Was told to stay away from NSAID's. Did not receive any advice or diet or fiber. When I mentioned gluten free diet he said it might help because the diet is constipating. HaHa
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
Shirley, find it interesting that your doctor had you on both asacol and entocort. My doctor said he always tried asacol first then if that didn't work, entocort, before going on to the cancer treatment drugs. Had the combo not worked there really wouldn't be a way to know which one was the problem... since it could be an interaction rather than either drug truly being the problem. My family doc never adds a mixture of drugs since he says I have a delicate "ecosystem"...LOL Whenever I have gotten sick and need something really new (non nsaid) He says to go off everything else I am taking.. and add them back in one at a time with a few days of spacing... Amazing how differently all doctors work.
I think you are the first one who wasn't offered fiber as a first treatment.
I wonder if I am the only one who was never offered prednisone as a treatment? By the time I got diagnosed.. only the doctor who diagnosed me believed the diagnosis.. all of the other doctors closer to where we live said the diagnosis was wrong since the condition was too rare. The doctor who diagnosed me left the university/hospital complex and when I found my current GI he said prednisone was too dangerous and was the only "recommended" treatment at that time other than asacol (entocort was off the market then).
grannyh
Thanks for your feedback on questran, Granny and Rich . I wasn't aware that it caused D. in some people! I am taking Colestrid, not actually Questran, 1 pill every evening, mainly for cholesterol ( though I doubt one pill really will make a difference as the prescription says I can take up to 16 per day!) and secondarily, to try to keep things tightened up for the night until my next entocort. I am only taking one Entocort pill per day, in the morning. As long as I stay away from magnesium or calcium, this regime works well, so I don't think the Questran (colestrid) bothers me like that. I probably don't even need it, just use it for peace of mind.
Granny, I have to have the magnesium or I get killer leg cramps and restless legs syndrome. I have to have the calcium because I already have some osteo -something in my spine. I am currently seeking an alternative means of taking these (not oral) and have tried the magnesium oil but it burns so much on my skin that I can only put it on one place (my thighs) and I don't think I can get enough on in one day to meet my needs. I don't seem to have any back-up magnesium in my system as two days with out supplements and the cramps come back. My current situation is not good, I agree , but am stuck between a rock and hard place at the moment. Am open to any suggestions. I go to see my doc in two weeks and I am going to inquire about magnesium shots.
Rich, I sure hope you start to see some real benefits from the entocort soon. I know that I have read on here about some people for whom it took a long time to see results, but eventually they did. And I hope that your plan works as you would like.
Hang in there, my friend. sounds like you are in control...
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
Linda,
I have suffered from leg cramps all my life.. charlie horse as my mother used to call them. About 14 years ago I took quinine pills for them.. but those pills were taken off the market.. because the pill manufacturer was not being consistent in the dosage each pill contained.
The next thing my family doctor suggested was cheap quinine water from Walmart.. or anywhere else I could get it cheap. That was OK.. but I found something which works better for me... Lemon/Lime Gatorade (not the power water stuff..just plain Gatorade brand) I am sure any flavor would work for me but the lemon/lime is the only one I can stomach.. the taste of gatorade is really yucky to me...LOL I get the 12 packs of small bottles. At first I drank a bottle a day during the summer. Now I drink it only when I sweat a lot or start to have cramps again in my legs. A neighbor is a Nurse Practioner.. told her about my leg cramp solution and she tried it.. and it worked for her too .. she then passed the idea on to some of her patients. Like everything else.. no one thing works for everyone.. but it is worth a try if you can find a flavor of Gatorade you like (and the ingredients aren't triggers for you).
I used to keep pedialyte around in case I had a massive D attack and needed to keep my electrolytes in balance. However, Pedialyte has a short shelf life. The Gatorade is good for electrolyte balance as well and has a much longer shelf life.
grannyh
GrannyH, thank you for telling me about this. I remember you mentioning that you took Gatorade, for dehydration and electrolytes but didn't realize you also took it for leg cramps. I am curious, do you know what is in it that helps the leg cramps?
I am definitely going to get some and try it.
Thanks again,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
Linda, I have no idea what is in gatorade that helps with the leg cramps (potassium?), my neighbor said that leg cramps can be caused by all kinds of things.. one of which would be the electrolyte imbalance. I have potassium pills but they seem to take longer to work than the gatorade.. the pills are probably cheaper but heck you get the liquid the body needs as well as the other stuff in gatorade..seemed liked like a win win to me:)
grannyh
I also started drinking gatoraid a couple of months ago. I buy the 20 oz. bottles and drink a couple a day. I have low blood pressure and aura migraines, so it helps to keep my body hydrated. I was actually told by my GCP to start drinking it when I went for a checkup. The flavor I like is orange - I've grown to really like the taste, and look forward to drinking it.
Like you, Linda, I have also experienced an increase in aura migraines after I went gluten free - have no idea what that's all about. I am very fortunate that I don't get the debilitating headaches that tend to follow. However, the vision disturbance can be quite frightening, especially if I'm in a situation where I have to function and cannot take it easy for a half hour or so until it passes.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Yes, those vision disturbances are frightening. The weirdest and most frightening one that I had, about a month ago, was when the alignment of straight lines in one eye went crooked. If I looked out of the good eye everything was normal. If I closed it and looked out of the other eye, all angles were askew. It only lasted a few minutes. I read up on this and disturbingly, it is a symptom of a type of macular degeneration caused by a leak of fluid on to the retina. I do plan to go to see the opthomologist again, to sure it is not caused by that. Although I would really be devastated to find out I had macular degeneration, apparently if they catch it soon enough there are some treatments they can do to prevent if from developing further.
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
I think the symptoms I have experienced are pretty classic of aura migraines. It starts with zigzag vibrating lines in my peripheral vision, then it proceeds to becoming "holes" or "fuzziness" in my focused vision. In other words, I can be looking at someone's face, and suddenly I can't see part of it. I cannot read, or watch anything, as whatever I'm trying to focus on kind of "blurs" away. The best way of dealing with it for me is to do some relaxation exercises while lying down. It generally lasts about half an hour.
When I told my GCP about it, she got concerned and said the onset of this condition to happen at my age is very unusual (usually happens when you're younger). She sent me to a neurologist, who had me do a CT scan, and then a head MRI (ouch). He said that the MRI was "abnormal", but couldn't tell me conclusively what was wrong. When I asked him if what he saw could have been there all my life, he said yes, that was possible, since an MRI will not tell WHEN something happened. He thought I might have had minor strokes, but could not be conclusive about it. Anyhow, I have never had any stroke symptoms, so I doubt it.
I hope your condition turns out to be something benign - keeping my fingers crossed .....
Visit the Microscopic Colitis Foundation Website
Obviously, mathematics and/or statistical analysis are not strong suits for those doctors. 
So what are you taking now, or when do you go back to see your doctor? 
