Gurglings, Gurglings & more Gurglings

[Ginny]

Well after being so proud that I could make the giant leap again in attempting to getting off of Entocort............my gut started about 10 days ago with constant gurglings, growlings and that loud echo sound. Of course, my BM's have follow the same suit. I've been taking upto 2 Imodium a day to keep things under control, but my gut is not happy. There are days I don't go at all, some pencil like floaters and then some days D. AND of course what little bit of weight I had put on is gone; back to the 105 at last look.

At work there has been some flu going around and even my DD had D this past Sunday for no reason. My DH keeps thinking I just have a bug................for 10 days??? It sounds, feels, and smells like MC to me! However, I have had painful joints, which I have not had before, chills, and itchy eyes that I could rip out at any given moment.

I've only added coconut to my diet in the last month and my diet is very very limited. I'm really fighting off going back on Entocort, but with the holidays ahead, I'm getting weak. I'm off to see my PCP tomorrow and see what he thinks (my GI has no solutions) and I am going to ask for a recommendation for a Rheumatologist and/or Endocrinologist.

I guess in the end I'm wanting to know if anyone has experienced this after going off Entocort and if it balanced itself out? Or looking for suggestions as to whether this could be another intolerance or the gut still needs to heal some more. Ginny

PS It has been most embarrasing to be in meetings and my gut starts to "sing"

[JoAnn]

Ginny, I know exactly what you're going through. Those tummy rumbles are so embarrassing at times. Even if you do have a virus, it could throw you into a flare. I think that's what happened to me last year-a combination of turkey and a bad virus. It all sent my immune system into high gear, triggered the mc, and ruined my holidays. I'm not you, but looking back to my past year, I would definitely go back on the full dose entocort, enjoy your holidays, and worry about tapering off when it's all over. I fought going back on and really regretted it. With all the added stress this time of year, it's hard to cope with everything. If I even think I'm starting a flare this year, I'm going back on entocort. Last winter it seemed like any time I picked up a virus, it would affect my mc. This past week I've had a really bad cold, but I haven't had any problems other than from cough drops and a sweet potato. That makes me think I'm much more healed now than a year ago when I was trying to tough it out. My tummy still rumbles sometimes just from what I've chosen to eat. If I know I'm going to be in a quiet meeting, I stick to rice that day. I hope this helps and I know you'll figure out what's best for you. I'll keep you in my prayers and positive thoughts. Love JoAnn

[tex]

Ginny,

I agree with JoAnn that you might have a combination of a virus which has triggered an MC reaction. Sometimes things like that just happen to come along at a bad time, and they catch us in a vulnerable condition. Usually, the sooner we can get it under control, (by whatever means necessary), the better off we are.

Tex

[Linda in BC]

Ginny, sorry to hear about the flare. How long have you been off entocort, and how long were you on it? What if you just tried one pill a day for a day or two, and see what happens?
Wishing you improvement,
Linda

[ant]

Dear Ginny,

As you know I took the plunge and went back on to Entocort. It is interesting your flare started with a possible virus. Now I think back my recent flare also was proceeded by a virus (that had given me some slight vertigo). And, of course, the original trigger for my Chronic D over two years a ago was almost certainly a virus.

Hope you get control over your flare soon.

Best, Ant

[Ginny]

Thanks everyone for your thoughts and advice. After 3 episodes of D this morning I decided to go back on Entocort because the Imodium wasn't working and more importantly, my weight starts to drop rapidly when this happens. As I have mentioned I am at 105 and cannot afford to lose any more. It is just very discouraging.................in the last couple of months I even had some hard BM's and really thought I was on my way to recovery. I will keep trying!

Linda, I have only been totally off for a month. Prior to that I took 1 every other day for a couple of weeks and then 1 every two days for a couple of weeks. This is my second attempt to get off Entocort. Although we are all different, this is why I now comment on taking your time with Entocort. The last 2 1/2 months were very positive until 10 days ago.

Ant, my concern still is.............is it another intolerance I have contacted MaryBeth; she is close by, and will probably do the MRT testing in January when the newest version is expected out. I am hoping it will pinpoint any more issues.

Tex, we are just going to have to clone you if this site keeps growing!! You always put things in its proper prospective.

Actually I have had this disease for two years now, but only a yr knowing what it was and going GF/DF. Going SF/EF/CF/YF came shortly thereafter. It is a very humiliating disease.

JoAnn sent you a PM...........thanks for being there!! Ginny

[ant]

Dear Ginny

Well we are in the same boat. I also wish I knew if it is another intolerance or what?? I thought I had tapered off very slowly and carefully, but obviously that did not work. Lets keep comparing notes.

All best, Ant

[Ginny]

Ant, sent you a PM. BUT definitely I think we should compare notes. Ginny

[JoAnn]

For what it's worth, when I had my big flare last year, it really wasn't from any new intolerance and I didn't really discover anything new in the months afterwards except for chicken which I really didn't eat much. I'm sure the turkey must have had some soy injected into it in some form. My healing at that point was more fragile than I had realized. I think we have to put so much work into this and the payoffs don't seem to match the work effort. For me, the time always takes so much longer than I think it should. The turkey coupled with a virus was more than my poor gut could handle with my immune system kicking into high gear. I agree with Tex that even though we're on the right track, we can still be very vulnerable when certain things combine (like the stress on the body when a virus enters the mix). Getting off entocort can be like a child learning to walk-you wobble along with those first steps, feeling encouraged, and then down you go. But you still get up again with some hand holding and then at some point you hopefully can really let go and be ok. I am walking along now but know I can go down at any time and this process is different for all of us. I pray and wish you all well in working towards remission. Love JoAnn

[ant]

Dear JoAnn

Thank you for your wise and encouraging words. I will go to sleep now..... calm. goodnight all, ant

[JoAnn]

Sleep tight, Ant

[Ginny]

I am getting through this because of you wonderful, caring people!! Much love, Ginny

PS I just realized that my 1st anniversary with the PP is tomorrow!

[tex]

Ginny,

Congratulations on your anniversary. I hope that when the sun rises tomorrow, your symptoms will be much improved.

Love,
Tex

[randyh]

I had a 3 week "break" if you will and was doing very well, then I got a very nasty cold and the triggered it all over again.

Wow this is tricky to deal with.

Hoping you get back on track soon.

[Gloria]

Ginny, Ant, and Randy,

I feel for all of you. It's so discouraging to think you've made it, only to discover weeks later that perhaps you haven't. And then repeat the Entocort cycle. I'm right there with all of you and am hoping, as you do, that there are no more intolerances.

I guess we can be grateful that we can fall back on Entocort. What would we do without it?

Gloria