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New to posting; It's time to vent

I’ve rewritten the post about twenty times already. I don’t know whether I’m introducing myself or just flat out ranting to the community that has grown to accept their/our fate. Either way, I’m Sean. :sign0144:

Anywho, I’ve lurked this site on and off for a year or so and I’ve never really gotten active within forum. I was in denial. I thought I would be just fine; I will wake up tomorrow and I won’t be sick. I lived the latter part of last year just thinking it was normal to be in pain after eating. It just kept getting worse and worse until I thought I was actually having an appendicitis. I remember that morning so well, it was July of last year, I was on my way to work and I knew something wasn’t right, it felt like I was running a micro-auschwitz camp inside my stomach. I made a split second decision to just go to the hospital; I believed I was really having a appendicitis. To make a long story short, I ended up staying in the hospital for about two weeks and the doctors couldn’t figure out what was going on. In the end, they kept claiming it was a bacterial infection. (Side note: the GI was kind of a a**hole, he had a golf vacation scheduled the day after, and didn’t want to me to get a colonoscopy because he “knew” it was bacteria)

After two weeks of IV drugs and pain medicine I thought I was superman, I was more then ready to get home. I was finally free from that cold building they call a hospital and thought all my abdomen and tummy issues were all done with, but little did I know. Fast forward to December - I still wasn’t feeling right; I couldn’t imagine a bacterial infection coming back and lasting this long. I picked myself up and finally made an appointment to see a real GI. After lots of tests, scans, blood work, and two colonoscopies we came to the conclusion that it was Crohns.

As usual, I went through the normal medication trials to see what works for me. I’ve tried a couple of drugs, but my doctor feels it’s time to move up towards a more aggressive treatment at this point. I’m currently on Lialda, omeprazole, chlo/clid(Librax), oxycodone(Only when needed, I hate pain killers), and now 6mp. I saw my GI yesterday and she really feels that I need 6mp at this point. I’m looking at the bottle right now and honestly, it creeps me out. I’m a 21, I’ve always been in great shape and I’ve always looked after my health. This is beyond inane; I would never imagine being in this position. Chemo pills? Really? Sometimes I just wish I could close my eyes really tight and just forget this is all happening. Sometimes it works, but then life reminds me otherwise. I have to keep reminding myself that the 6mp is such a low dosage of chemo that it really can’t cause too much damage, but I guess the stigma of chemo itself is what’s really dancing with my mind. I haven't taken it yet as I'm working the graveyard shift right now(which is rare) and I don't know how I'll feel on it. So I didn't want to chance it. I'll take my first dosage tomorrow night

I’m just scared because I’m also finding it hard to maintain a real balance between work and my crohns. I’ve been missing a lot of days from work - if it’s a good week I’ll probably be able to work 4 days or so. I have to call out about one or two days every week. I work the front desk at a 4 star hotel. So you can only imagine what kind of song and tap dance I have to do for these people while I’m feeling like I’m carrying death’s baby inside of me. On top of that, the working conditions are a little rough at times, like no sitting in front of guest and things of that nature. I have been lucky enough to secure my job and my insurance with HR though. I’ve been dreaming about going back to school as well and finish my degree, but I’m nervous about my symptoms preventing me from getting anything done.


So there's my nonsensical wall of text rant. I feel a lot better just typing all of this down and posting it. Thanks. :p
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi and welcome to the forum! :D

I'm glad you were finally able to get a diagnosis. It sucks having to try out all the different meds to find out what works but I hope you do well with the 6MP. I took it for over 15 years (dose went from 50mg to 100mg at the end). I just stopped taking it yesterday as I'm switching to Humira now. The 6MP wasn't in therapeutic levels anymore. I never had any side effects while taking the lower dose though (had some minor hair loss at the higher dose and a slightly elevated liver count but that should clear up soon). There are a lot of other members on the forum taking it who are also doing well on it.

Check out the subforum for 6MP and meds like it here: http://www.crohnsforum.com/forumdisplay.php?f=64

Good luck and keep us posted! :D
 
Hey Crabby!
Thanks for the welcome. I'm diving through tons of posts in the 6MP section right now. :p

Are you worried about the long term effects the might come with it especially since you've been taking it for 15 years? Just curious.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

I am on 6-mp myself (been on it about 3months) and whilst it is still early days so far I have been doing well. With these meds there is aways weighing up the pro's and con's of the potential long and short term effects. The way I make up my mind is that the docs warn of what MIGHT happen whereas not giving my crohns a treatment that may work will definetly lead to issues that can be just as bad.

Hope you can be feeling better again soon.

AB
xx
 

Jennifer

Adminstrator
Staff member
Location
SLO
Are you worried about the long term effects the might come with it especially since you've been taking it for 15 years? Just curious.
No not at all. I was having blood work done once a month and if you stay on top of your blood work you should be fine. I was using it as maintenance after my resection as well as before my resection and its helped to keep me in remission for many years. I'd go back on it again if I had to.
 
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