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Crohn's Disease Forum » Support Forum » Vent Away » Playing the waiting game


05-21-2017, 07:47 PM   #1
Mintphoenix
 
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Join Date: Aug 2014
Location: Brisbane, Queensland, Australia
Playing the waiting game

Sooo. In November I was feeling really good. I saw my Doctor and as I had been this way for a while he decided to send me for a colonoscopy to make sure it wasn't a false positive.

After that I slowly went downhill and when I had the colonoscopy they found I had a stricture in my small bowel close to where it connects to the large bowel. They arranged for me to have 2 different MRIs and advised me that surgery may be required.

I have continued to go downhill since that appointment. I had my first MRI on 12/05 and am due to have my other next Monday 28/05. I have an appointment to get my results on 06/06.

With how I have been going I'm both scared that they will want to operate and scared that they won't. I'm over feeling sick, tired, being in pain and having bad bm's. I really want to get back to where I was last year and I don't know how.

At the moment I know I can't really do anything but wait and that's driving me nuts. I feel lost for direction. If I knew I was going to have the surgery I could plan for it. It may make me sound a bit crazy, but with how out of control my life often is I feel the need to at least be able to control little things. Even if it is just making a list so I can be prepared.

I'm trying to keep myself distracted. I work as I am able, I have joined a crochet group where a new square is released every fortnight and have been marathoning tv shows I loved, but randomly stopped watching. They help a bit, but don't seem to chase away the worry.

Why can't time go faster? I just want it to be the 06/06 already? I'm just tired of not knowing. I don't want to have surgery, but if it will get me to a better place then I'll have it.
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Diagnosed: 02/09/2015
Medication: Azathioprine 75mg
Also taking: Lamictal (epilepsy) 100mg, Maltofer iron supplement, Ostelin Vitamin D and Calcium
05-21-2017, 08:04 PM   #2
ronroush7
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I am sorry. Please let us know how you are.

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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.
05-29-2017, 08:55 PM   #3
Mintphoenix
 
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Join Date: Aug 2014
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I'm alright. I had my second MRI yesterday and actually managed to fall asleep on the machine!

The contrast they used made me feel a bit out of it so I went home and slept it off. That contrast is the closed I have come to feeling tipsy in a long time and the extra sleep helped relax me a bit.

Nearly there! Just have a week to go now and we'll know either way!
05-29-2017, 09:14 PM   #4
ronroush7
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Wish the best for you.
06-06-2017, 05:39 PM   #5
Mintphoenix
 
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Thanks. Got my results yesterday. No surgery, but I have started developing a fistula which is infected/inflamed so I am on antibiotics for a couple of weeks and I am being put on Humira to try bring the Crohn's under control as the Azathioprine is not doing the job on it's own.

I'm going to have to wait a couple of weeks as living in Australia the government heavily subsidises the cost of Humira and my specialist had to submit an application for me to have the access to it.

So hopefully the antibiotics help settle the infection/inflammation a bit and I'm alright with Humira.

It's a relief to know and to now have a plan of attack in how to deal with this.

Thank you again.
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