Busted by my GI- now what?

[DebE13]

The nurse from my GI's office called this morning with a follow up to a see-how-your-doing call from last week. I still need my Entocort script from him but haven't been up front about what I'm doing. I told her I was fine with taking 3mg every third day. In reality it's about every 3-5 days. The last they knew I was taking 3-6mg daily. I told the nurse I still had D but was "fine." I don't have the energy to get into arguments food and stress issues. These are the same people that tell me food has nothing to do with my condition but to try GF if it makes me happy but isn't necessary. Followed by, keep a bland diet like cream of wheat, toast, etc. when I have a flare.

I was told my GI wants me to try taking 2 pepto daily for two weeks to see if that helps. I explained I already did the pepto regimen taking 6-8/day and all I had was black D. She was a little impatient and asked if that was while I was taking entocort. I think it was before that but really can't remember. All I know is pepto and immodium do nothing for me- at all. Well, the immodium causes cramping which I rarely get but I'm not looking to add to my misery.

So now that I dug a hole and jumped in, what do I do? I don't feel like running out and buying pepto but then what do I say when they call back in two weeks and what other ideas might they have? If I wanted drugs to help I would bump up the entocort or try the prednisone again. NOT. Actually, now the higher doses do not prevent D but just cause additional side effects. I don't gauge my success by Norman alone. I would rather have D and limited meds than drug induced Normans. Maybe I'm way off but I guess that's my choice.

I'm actually quite surprised that my guts are holding out as status quo right now. I'm involved with a potential gender discrimination case, a separate case with the department of labor, and looking for another job right now. It's all been a mess. I worry about the recurrence of cancer and GI issues due to the stress but can't back down when I feel I'm justified. I really didn't want my GI to stick his nose in the picture right now.

Part of me asks myself what happened to honesty? But I have been kicked out of a practice for my honesty, called a hypochondriac, and referred to a psychologist all because THEY are behind the times. I strongly believe in honesty but when it comes to this I fail.

I know there must be something in my already limited diet that is causing an issue so I need to deal with that, not take more chemicals that won't really address the issue.

[tex]

Hi Deb,

I'm sorry to hear about all the additional stress that's been imposed on you. I think if I were in that situation I would be honest with the GI doc, but I would do like he and most of the medical researchers do, and I would cherry-pick the data that I share with him.

IOW, I would simply tell them the truth — that due to a very stressful work-related issue, I can't take a chance on changing my treatment program anytime soon. That could cause a total relapse of symptoms, and I simply can't afford to take that chance now. If they don't understand that, then they're either from some other planet, or they have no compassion at all.

Tex

[DebE13]

Thanks Tex,

I never thought of approaching it from that angle. They have been very content to leave me be for the past several years so I was a little surprised they took interest in me after I told them I was doing ok. You're right, It would be pretty harsh for them not to cut me some slack.

I may be a little too hopeful but I'm hoping my situation will change by the end of the year. I wish I had a crystal ball so I knew what was coming. I find the most difficult part is the waiting and unknown. I like to have my direction set and a plan made and it seems everything is in a permanent state of limbo and I have very little control over any of it.

Another lesson to be learned in patience and taking one step at a time. I keep thoughts of Gabes in the back of my mind and take comfort in the thoughts that I am taking steps to better my health by my changing my situation.

[nerdhume]

DebE13
I think the unpredictability is what bothers me most as well. Not knowing from one day to the next what I will be able to do or feel like doing. I am blest that DH and I own our business so I can just work around whatever is going on. I am not sure how I would work full time and deal with this too.

[MarthaE]

Hey Deb I just wanted to say that I think it's wonderful you are doing so well with taking entocort every three to five days. That inspires me that may be someday I can get to that point as well. I very much would love to not have to take the medication because I am super sensitive to the side effects it causes. LOL ugh… i miss my hair and skin and sanity etc. I am allergic to imodium, the blue dye in it and the lactose. So I had some compounded for me along with some Benadryl. Anyway thanks for sharing, gives me hope, m

[DebE13]

Nerdhume, it's a lesson in life to learn learn to roll with what life throws at you. Some days are definitely easier than others.

Thanks Martha, I find great inspiration here. I have made slow improvements and often questioned if I would ever get off of 6mg/day. It took a while and I still have a ways to go but as hard as this is, the diet is worth following. Without it, there would have been no improvements. When I first joined, I thought it was crazy to be told it could take years to heal in some cases. It's hard to be patient and dedicated but the results are priceless. Good luck to you!

[MarthaE]

THANK YOU