Help, I'm new

[Jan]

JoAnn,

I'm also curious if you are getting any relief from the Asacol. When I took it I was started at 3 pills twice a day. I sure wasn't getting any better on it or it's alternative, Colazol. Come to find out these are in a sulfa class of drugs and I'm allergic.

I was put on Entercort and had almost immediate relief (with a couple of days). The last time I was on it the total time was about 3 months. I keep under control, most days, with diet alone. Sometimes I have to use Immodium for a couple of days.

Good luck. I'm sure you see the clock ticking down quickly to a new year and going back to work.

Jan

[JoAnn]

Hi Jan, It seemed like the Asacol was helping some during the first month and a half (or I was just hoping really hard) and then things reversed back to the same problems. A little more than a month ago, I saw my PCP for other issues and metioned the problem with the Asacol. (It was prescribed by my GI.) She thought we ought to explore some other things and put me on an antibiotic called Alinia for cryptosporidium (some parasite you can get from kids-I'm a teacher) and Nystatin for yeast. I don't know if I actually needed those medications, but they sure set me back with bad diarrhea. I then saw my GI on Dec. 1 for a follow-up and told him the Asacol was not helping. That's when he had me tested for celiac and told me to try the Pepto treatment. I will see him again on Dec. 22 and hope to get on the Entocort. He mentioned it as the next thing to try. I hope I do as well as you and others I have read about her. Thanks for the support. JoAnn

[Dee]

Hi JoAnn!
The reason that you are seeing no improvement on the Asacol could be the dose is too low or you may be intolerant to dairy, of which, Asacol contains. That's why the the Asacol quit working for me.
If gluten intolerance is diagnosed thru EntoroLab then my guess would be that you are also going to be casein intolerant. I think the casein intolerance was the worst for me!! I'd love a grilled cheese sandwich or some GF baked macaroni & cheese.

Dee~~~

[JoAnn]

Thanks Dee, I ordered the Enterolab (not sure if I'm spelling that right) tests today. I'm adding your observation that my dose of Asacol might have been too low to my growing list of things to talk about with my GI. You've all been so helpful and have helped my state of mind so much. Thanks so much. JoAnn

[starfire]

Hi Again,
This is just my OPINION........... I couldn't pretend to know the right thing for you to do.

If I wanted to control the D with meds indefinitely, I'd do both Entocort and Asacol (6 per day) for maybe a couple of months at the minimum. If things were GREATLY improved then wean off the Entocort but stay on Asacol. If that maintained for several months, I'd try cutting down the dosage to 4 a day. One person here even maintained on 1 Asacol a day for some time but when she cut out the 1 pill her D returned after a few weeks (could be a little off on the time there).

If you goal is to control the disease with diet........... I'd still go the Entocort route but for at least 6 months and gradually wean off but don't wait until you are off the med to start the diet. As far as the diet......... the sooner the better.

I don't know the direction you wish to take, but I wish you well with your decision.

Also, there are other mesalamine meds besides Asacol. I'm not sure if any are made without dairy (see Dee's post) but it's worth a shot checking it out if you suspect that it gives you a problem

Shirley

[Lucy]

Hi Joan,

That EL nurse is pretty good with talking with docs, I think. I'm pretty sure she's still there. She apparently worked in an immunologists office for years and years before hiring on at EL, so that should give her a pretty good understanding of immune issues in general.

I'm glad that some progress is being made into getting these tests, hopefully covered by insurance. The fact of the matter is that, in the long run, early diagnosis and treatment could save the insurance companies big bucks, not to mention all the pain and suffering of patients! Whole thing, once again, boils down to the published peer review as we've discussed elsewhere recently, if I recall. I just wish the studies that verify this type of testing would give the tests the respect they deserve. Perhaps there needs to be more than one study (German one has been done) that will provide the necessary amount of peer review, but even then, it takes time for all this research to get published, and then add on lots more time (years) for the information to circulate to all the practitioners. Information seems to travel VERY slowly "across the pond," also,I've noticed. Perhaps it won't when we get to that stage.

Good health to all!
Luce

[tex]

Hi JoAnn,

Welcome to our internet family. It appears that you've already received a wealth of good advice and support, to help you get started on your path back to health, so I don't have much to add at this point. I have a hunch that you will soon have your treatment program fine-tuned, and it won't be long before you will have your life back.

Good luck, and please keep us posted on your progress and/or any setbacks.

Tex

[JoAnn]

Hi Tex, I am the JoAnn that was deleted by the hacker, so I've re-registered today. I joined last week. What a blessing to find this site! I feel like I found a new family. They've given me so much helpful advice-it's helped me feel like there is hope in dealing with all this. My doctor currently has me on the Pepto bismol routine which I didn't think was working, but now I think it is helping. I'm being cautiously optimistic-time will tell. It's just good to know about the GF diet and that there are other alternatives. It's nice to hear from you and know there is a place to turn for help and inspiration. Thanks JoAnn

[RUBYREDDOG]

Hi JoAnn, Welcome to our group. I tried the Pepto routine when I first learned that I had MC. 8 pink tablets per day for 8 weeks. It was recommended on a web site (the Mayo Clinic, I believe). It did nothing for me. Hopefully you will have better results.

There is a lot of great advice here, should you need it in the future. Often, the emotional toll this disease takes is overlooked. That is what is so great about this site. We all know what you are feeling, Just trying to get your life back. Feel free to share and ask anything. Good luck!

Hotrod

[JoAnn]

Hi Hotrod, Thanks for responding. You're right-no one mentions the emotional toll. I remember after my colonoscopy last August, my doctor acted like if it turned out to be MC, it was no big deal and a pill would take care of it. This problem combined with thyroid problems made me so weak, I wondered if I'd ever feel good again. I'm definitely better, but am still trying to figure out what the long term plan will be for me. I seem to be one who experiences a lot of side effects from drugs. Finding this site has been the best Christmas gift I could get. Thanks for your support. JoAnn

[barbaranoela]

Hi JoAnn--am abit late in responding but U surely have gotten plenty of good advice--
Pepto did nothing for me
Was mismanaged by my first GI---
Finally went to the city and there was this wonderful GI who got me thru all this--
Appears my issues started from being on meds from my GP for a condition I didnt have--and on and on--
Entocort didnt help either---
Colazal given me by second GI is what got me on the road--
Good luck in your endevour to getting well --which sounds like U are attacking the problem--

Yes---this family is terrific--arent they---soooooooooo much knowledge--
Fondly--Barbara

[JoAnn]

Hi Barbara, Thanks for responding. I'm envious of all of you who have worked through this and found what works for you. I feel like I'm in the middle of the process with all its highs and lows. I'm glad to know about the different drugs, though, in case I need something different. I have a feeling that even though the Pepto gives me some relief, I'm not sure its going to work for the long haul. I have an appointment with my GI this Monday, Dec.22. Thanks for your encouragement and support. It really helps. JoAnn

[G'ma Mary]

JoAnn;

Well, I'm really late in welcoming you, but welcome anyway!!! I don't visit here often any longer, so have a tendency to not see new folks right away.

I was diagnosed back before there were meds (Asacol, etc) available. My GI called me on the phone to give me the diagnosis and he began by telling me he had both good news and bad news. The good news was he finally had a diagnosis for me, the bad news was there is no cure for it and I will "learn to live with it". Though I didn't say it outloud, my response was "bet me - I'm NOT going to live with this!" (At that point, I was having 15 - 20 liquid stools daily, along with urgency, abdominal pain, bloating and depression!) He told me to get on the Pepto routine and told me if that helped, that was my life-time treatment. He also admitted he didn't have a lot of info on MC and suggested I do my own internet search. You can probably imagine how depressing this was and how alone I felt at that time.

I found the site that preceeded this one and from people there, I learned that I should NOT stay on Pepto for my life-time. On my next dr visit (I think it was 2 weeks later) I mentioned this as well as the possibility of a GF diet to the GI. He assured me that I could stay on Pepto for the rest of my life if I saw relief from it, and he informed me that when he did my EGD he'd tested for Celiac and since he ruled out Celiac from that test that the GF diet would not give me relief.

At the end of 8 weeks on Pepto, people on the Board were concerned and had me convinced I really did need to go off it. At that point, I was seeing great relief, but not total! I called the GI back and he said he was sure Pepto was safe, but he would check on it and call me back. At that time, he said he'd checked with a former professor of his who confirmed that I needed to stop the Pepto. I'd also asked him again about the GF diet, and he again assured me it would not help me.

A few months later, I was in his office and asked again about diet and his response (as he looked straight into my eyes) was "I can guarantee it will not help you. But, I can also guarantee it will not hurt you. So, if you feel better trying it, go ahead." Why I felt I needed his approval, I still don't understand. However, with this "back-door" approval, I went GF in Aug, 2002. I was seeing wonderful relief from abdominal pain, gas, bloating, etc within one or two weeks, some relief from D in about a month and by Thanksgiving that year I was totally free of the D!

I still see the same GI doc (though not often, since I am symptom free), and he now offers tests for lots of different dietary intolerances. He has praised me for being able to stick to this diet and he says he has patients with Celiac who he has ordered to be GF, and they don't follow it as well as I do and he didn't even really support my doing the diet.

All this is to tell you, none of us here are doctors (well, we do have one pediatrician on the board, but she's here as a part of our MC "family"), but we really do take it seriously to know our disease as well as our bodies. None of us will ever tell you to do something your doctor is not approving, but we can offer you advice as well as support. When we disagree with your doctor's orders, I personally would suggest you continue to keep your doctor "in the loop", but do what you feel is best for you. The other reason for my telling you this long story is to let you know not to continue on Pepto for more than 8 weeks. The Bismuth in it is a heavy metal and can accumulate in the body and cause toxic effects. Apparently they are rare (but doctors tell us MC is rare), but they can also be very serious.

As for me, today I remain totally GF and have found no other food intolerances. I take no meds for the MC. I also was 100% symptom free when eating from home (and mostly symptom free if eating out) until Oct this year when I had a bad flare-up. It lasted 1 week and went away without my changing any of my diet and without taking any meds. Once again today I am symptom free!

I love this site! I know I would not be where I am today without the help and support I have received here.

Please feel free to ask us anything, come here when you are feeling "down" and we'll understand and will do what we can to help. You are now one of the family and we really do care!

G'ma Mary

[JoAnn]

Hi Mary, it's so good to hear from you. I haven't been able to get to the computer much over the weekend with all the Christmas activities going on here. I thank you so much for sharing your experience. It's so comforting to know that you have been there and suffered with the same problems and have been successful in conquering them. I don't know if I'm at the begiinning or middle of all this, but it sure is a process. You sound so brave to have dealt with this during a time with so few options. I was supposed to go to my GI today for a followup, but we've had a terrible snow storm come in and so I've postponed it. I had a PCP I had gone to for almost 20 years, but she basically abandoned me when I developed thyroid problems she didn't know how to deal with. You don't know what kind of doctor you have until you get a chronic illness. After tryng a couple of other doctors, I finally found a clinic last fall that has a more holistic approach. I have worked with the nurse practitioner there and she has helped me so much. I saw her on Friday and she wants me to go on what she calls a detox diet after Christmas. It is gf so it will fit right into what I'm doing. The pepto seems to help, but I'm also taking 2 imodium each night before I go to bed. I'm going to try to get into my GI next week and tell him how it's going. Sometimes it's hard to work between 2 doctors. I wish they were both in the same room. Thanks again for sharing your experiences, it really helps to read them when I'm feeling down. Merry Christmas, JoAnn