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hawkeye

Moderator
Staff member
Hi there. I found this web forum after my latest flare up last month.
I’ve had crohn’s (Ileum and lower colon) for the past 20 years and was diagnosed at 17 after a period of weight loss and bloody diahrrea. I was initially prescribed prednisone and 5-ASA followed by Imuran. Four months after being diagnosed I was hospitalized and put on an elemental diet to get things under control. Luckily that did the trick and I was able to go for 18 years until 2009 on 5-ASA and Imuran with only one flare up requiring a prescription for prednisone.
Since late 2009, I have had to go on prednisone five times and have had two colonoscopies done since November. The prep for these (Pico Silax) has not gone well and the doctor has not been able to get a clearer picture of what is going on.
After going home following the last procedure four weeks ago I ended up back in the emergency room with a blockage. Following an x-ray and shots of Fetanyl and Gravol, a surgical resident brought over a NG tube and explained the procedure that would to pump out the contents of the stomach. My response, which elicited a chuckle from the surgical resident was “So you pump my stomach for a couple of hours, give me a prescription for prednisone and then I go home for a few hours of sleep and go to work tomorrow right?” She then explained that I would be admitted. I spent two nights in the hospital and was released two days later with a course of prednisone.
I have to go back to see my GI in a to see where we go from here, I was referred to him late last year (I am in a different locale from when I was first diagnosed). Ideally I would like to deal with this via medication (still on the 5-ASA 3 gm/day and Imuran 100 mg/day). The prep for the last two colonoscopies with the PicoSalax was not pleasant (took a long time for things to come out) and I wonder if the prep does not agree with me or if there are some bad strictures. When I had a colonoscopy in 2006, I took magnesium citrate with no issues.
 

xJillx

Your Story Forum Monitor
Welcome, Hawkeye! I am so sorry your quiet 18 years had to come to an end. Since you have had difficulties with the colonoscopies, have you had any scans done? I think colonoscopies offer the best picture of how things are doing (though the prep is AWFUL!), but if it isn't working for you, you need to go another route. I hope your doctors can figure out what is going on soon and get you back on track to remission! Keep us posted!
 
Hi Hawkeye,
Welcome to the forum. I hope you can get this new flare under control soon. I also like magnesium citrate as a prep. I never had PicoSalax, but I've had some other nasty preps - but they were just hard to get down. Always came out without problem. But, you mentioned a blockage so that would definately slow things down!
 

ameslouise

Moderator
Hi Hawkeye and welcome!

And 18 year remission? That's what we like to read about here on the CF!!

Sorry you are struggling right now. There's still alot of meds out there that you can try. For your next scope, mention the mag citrate and see if it's an option.

Good luck - hope you find some releif soon!

- Amy
 

hawkeye

Moderator
Staff member
Jill - They did a quick scan the day after the first scope that showed some narrowing, but they wanted to do the second scan to see if the narrowing was due to scarring or inflammation. I have an appointment in a few days with the GI to see where we go from here. In the meantime I am on a low fibre diet and off of the prednisone.

and to CDDad and ameslouise, thanks for the welcome.

Mark
 

hawkeye

Moderator
Staff member
Just thought I’d post a quick update. Went to the GI today. After the two scopes (November and February) the net result is they can get through the first stricture in the ascending colon but not the second, so the scope can’t really give a good picture as to what is going on beyond the ascending colon.

Basically two options: 1 “big drugs” (Remicade / Humira) or 2 surgery. In the meantime he has upped the Imuran from 100 mg/day to 200mg/day. I am checking into my plan to see if it covers Remicade or Humira. If not covered, it likely won’t be an option. He will arrange for a surgical consult and I can discuss imaging options prior to a potential surgery should it be warranted.

Right now physically I feel fine, no ill effects, so it’s basically a discussion with the surgeon and back to the GI in 4 weeks. Mentally I am fine, my game plan is to live life, take it day by day and take good care of myself. I haven’t had the time to dwell on things since the appointment. I figure if I can keep busy, with a positive outlook, that is part of the battle. The big focus now is to get a nursery ready, my wife is at 31 weeks and counting.

This is a great site and I am truly glad I found it.

Mark
 
Hawkeye

Wow, 18 yr w/ controlled sx....that is great. They are thinking about putting me on Imnuran next, are the side effects horrible?
 

hawkeye

Moderator
Staff member
Jamie Lyn:

I have not had any side effects that I noticed, I go from 100 mg/day to 200 mg/day tomorrow so I'll see how that goes. Although the GI was not overly concerned today with side efects showing up wih the increased doasge given the length of time that I have been on it. His initial thoughts are that if I have not experienced any side effects thus far, I likely wont with the increased dosage. I thought with an immunosuppressive that I would have more colds or influenza, but I only get one cold each winter (just getting over one) and rarely get the flu (I get a flu shot every year).

You may want to check out the Imuran Club section in the treatment forum, there's lilely some good posts there.
 
Hi Mark,

Just wanted to say welcome and congratulations on having a little one! I've only joined recently and everyone here has been very supportive. Wish you all the best!

Vish
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Welcome Mark! Glad to see you had so many good years in between.....good luck with everything - I've never had the Pico prep...the go-lytely was always the worst for me!

If you do end up getting approved for remicade or humira, please check out the respective threads on each - tons of information there!
 

hawkeye

Moderator
Staff member
I got mixed up in the earlier post yesterday, the strictures were in the descending colon (the scope would have been ascending the decending colon).
 
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