• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Hello everyone

Hi I finally found this forum again and have bookmarked it this time. I have had crohns for a very long time and have never been in remission. I currently am using remicade, entocort, nexium, loratab, B12 shots,D3, and the once a year D infusion. So glad to see smilies here!:thumright: I lost my colon and rectum 6 1/2 years ago, and my current GI has told me alot of my small intestine also. I have a very grouchy J pouch, and a bad gallbladder that they won't take out until I achieve some (90%) remission.:frown: I have become accustomed to living in pain, but would love to know what it is like to feel normal and good again.:rosette1: Well anyway is this too much info?:ylol: Happy to be here!
 

mikeyarmo

Co-Founder
Welcome Cali!

Glad you found us (and our smilies) again :D.

Sorry to hear about your long-term struggle with Crohn's. Hopefully you will be able to find some information on the forum that can help with the management of your pain. Regardless, you are sure to make some new friends! :).

By D infusion do you mean vitamin D infusion? How does that work and how much is infused into you? I had never heard of that before so am quite curious.
 
Thank you for the welcome Mike...is it ok to call you that? Yes it is a once a year infusion of vitamin D. I forget the commercial name for it. My bones are mush from lack of nutritional uptake. I have lost all my teeth because of it also. My PCs at the Navy hospital have helped me as much as my GIs lately. They are the ones who found out I was bleeding to death last April, and started to take a very close look at my general health and put me on B12, and iron, and breathing aides to keep my oxygen levels up in my blood. The infusion takes only about 15 min, but for about 3 days afterward you don't feel so good. Kinda like the flu. At least I did. Ok I just looked it up and it is Reclast.
 
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mikeyarmo

Co-Founder
Thanks Cali and yes you can call me Mike :).

I am sorry to hear how your long-term stuggle with Crohn's has impacted your body. I do not know if it will help your bones at all, but some light exercise (weights or even just walking) might help maintain your bones. Of course that is not possible if it causes you pain to do and it sounds like your body is having more trouble with absorbing vitamins/minerals from what are you eating.
 
Thank you Mike for your suggestions and concern. Exercise tends to make my insides contract and hurt. When I go to the store I ride the carts so I can get what I went for done instead of running to the bathroom every five minutes.
 
Hi Cali

Welcome to the friendliest forum on the net! :thumright:

I'm real sorry to hear about your ongoing battle with Crohns - it's SO awful to deal with sometimes - I feel for you. :hug:

I hope that everything gets sorted and your Crohns settles down so you get some relief at least.

Hang in there

Gentle hugs :hug:

Shelli x
 
Hi Cali,

Sounds like you've had a rough time of it! I've found this place very welcoming and helpful. No one can understand someone who has crohn's like some who has it :).

P
 

Angrybird

Moderator
Hi Cali, really glad you have found us again! So sorry to see that this disease has done such a number on you. What have the docs got to say about the fact you are on all these meds and still having issues? How often are you seeing them about this, I really hope they are keeping a good eye on you? Please keep us updated on how things are going :hug:
 
Thank you for the warm welcome everyone. I think one of the reasons the meds aren't helping me to remission is because of a bad gallbladder. They think the flare that hospitalized me a couple months ago was caused by the gallbladder. My GI doesn't want to send me to surgery until I am at least 90% in remission, but gallbladder is keeping me sick and round and round we go.LOL They say one of the worst parts of my intestine is wrapped around the GB, and that there is much scare tissue in that area and they think it will take a regular surgery instead of a lap. They are very nervous about it. I have noticed that Drs are very nervous people. LOL
 
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