Crohn's Disease Forum » General IBD Discussion » Does the waiting drive you crazy?

10-11-2017, 08:00 PM   #1
Idiom's Avatar
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Does the waiting drive you crazy?

Maybe I'm just the impatient type

I've come to realisation that one of the biggest stresses of having Crohn's comes from the constant waiting.

Currently I'm waiting to see if Stelara (Ustekinumab) will kick in and improve my health. Before that I was waiting months to see if I could take Stelara. Before that 101 other things.

Does the waiting drive others crazy?

How do you try to push it to the back of your mind?
10-11-2017, 08:38 PM   #2
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ronroush7's Avatar
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Location: vienna, Virginia

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Do you have any hobbies? You could distract yourself that way.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-12-2017, 03:56 AM   #3
Idiom's Avatar
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Thanks Ron. Yes trying to learn French at the moment. Not sure I'll stick it out but it distracts me a bit.
10-12-2017, 05:50 AM   #4
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Yes idiom I agree with you... I'm waiting too for entyvio to kick in... been 6 months now since my last flare and 4 months with entyvio...

I had to cancel professional projects I dont know when I could restart, I tried to plan vacations, but had to cancel as I was not feeling well.

I'm trying to relax and live my life day by day. Good thing is that when we find the right medication we can have years of good health I hope.

I agree with Ron, hobbies help a lot.
10-12-2017, 07:50 AM   #5
Join Date: Oct 2017
Not any more it dosnt. I use the time to document my illness and research it. I am in a unique position as you are. Most GI docs dont have a GI disease, you and I do.

So keep a detailed journal, its people like us who will finally get on top of these diseases because we get a unique insight into it. Write everything down, its valuable first hand data to scientists
10-14-2017, 05:52 PM   #6
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Location: New Zealand

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I feel like I've been waiting for the last 3 years!
First for a proper diagnosis, then for a resection, then for Humira to kick in, then for a double dose of Humira, then exactly the same scenario for Infliximab, then waiting to qualify for a medical trial and my next wait will be to see if it does anything and whether that is the medication not working, or the wrong dose or because I'm on placebo, sigh.

I can't plan anything, have given up working and was hoping that would help, not. Now I don't really want to start up anything else like volunteer work as I don't know if I'll be well enough to do it.

I just want my life back!

Impatient from NZ
Diagnosed with UC in 1994, CD in 2014, "IBS" in between
Lactose intolerant, IgA deficient and Arthritis.
Resection due to strictures in 2014
Currently taking: amitriptyline, zinc, multi vitamin, b12 shots, Vit D, B complex, magnesium, calcium, Psyllium and the occasional iron infusion.

Previously on Remicade, Humira, Prednisone, Azathioprine, MTX, Pentasa, Asacol, Salofalk
10-15-2017, 03:53 PM   #7
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Me too! I feel like I am always waiting for one thing or another: waiting to get better from a bad flare and then to see if Iíll continue to feel all right. Sometimes itís just waiting to see if I should call my GI or feel sicker before I do, or waiting for tests and then results. Usually I just feel like I live in permanent limbo.

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