I think it's time

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sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 7/8/2010 9:14 PM (GMT -6)   
Hi all,

I've popped in here a couple of times from the Crohn's forum, but I think it's time for me to get more involved on this side of the situation. I've now officially failed every single drug approved for Crohn's, except oral steroids (but I have osteoporosis, so...). My doc had me on methotrexate for 6 months and today we did a colonoscopy to check progress. My sed rate was staying around 70-78, so he wanted to go in and see if that was actually what the inflammation was. Sure enough... Starting at the middle of my left side and then all the way down to the rectum is one big gigantic solid ulcer. I have a few ulcers scattered here and there further up toward the ileum, but mostly it's in the rectal area. i've relied on pain meds to get me through years of this. I lost Remicade in November of '06 and have not stopped flaring since. Even after a week in the hospital last summer with mega doses of methylprednisolone, this is about the best I get.

I have low grade temps - hovering around 100 by the end of every day. I am a single mom to a 12 (almost 13) year old. I guess I figure it's time for me to go back to *living* life.

I'm not ready to do a permanent, so I'd go with a temp ostomy. I guess I'm just wanting to introduce myself, get words of advice and read about others who have found life after ostomy! ;-)

So, if any of you had a temp ostomy, I'm curious how it was after the surgery? Since I'm so ulcerated, I can't believe that the pain from those ulcers would disappear right after surgery. about how long would it take to heal the colon after the stool is diverted into the ostomy?

Any other words of wisdom? Part of me is completely and utterly terrified. Terrified of how it will impact my life in ways like dating, which clothes I can still wear... The other side of me is just ready to not have to worry about incontinence, pain, potential side effects from medications. Plus, I was super active before Crohn's took control. I miss running, camping, hiking, skiing, etc.

Thanks in advance!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 7/9/2010 4:33 AM (GMT -6)   
Hi Sr and welcome, sorry to hear your having a difficult time of it, you sound so much like the way I was as I too am a crohns sufferer and failed every drug going but I became feacal incontinent which made me crohns crippled (doctors words). I have a permanent ileostomy as the disease in my rectum was too bad so it had to be removed plus It apparently isn't often a good idea for a crohns patient to have a temp ileostomy, (thats what I was told) my diagnosis became crohns/colitis around 6 years ago but began 22 years ago with them saying crohns. I ended up having emergency ileostomy done and even though I knew I was going to end up with one it was still hard to get my head around the changes to my body but the instant relief from the chronic pain was heaven and now I am now 16 months post op and am so glad to have an ileostomy. There is nothing you can't do with an ileostomy and no one can tell you have one unless you choose to tell them. As for dating I not long split from my boyfriend of 3 years and the thought of dating does scare me too but I have come to accept the way I am now and if someone loves you enough they will deal with it but I wouldn't tell them until I was comfortable to do so. As for after the surgery I went back to work about 4 weeks post op but then had to go back in 4 months later to have the rectum removed so slight setback but today I feel great and am loving life as an ostomate. It sure beats the times I spent in hospital which ended up being so regular it was a nightmare. Is your surgeon going to remove your entire large colon and do an ileostomy or do an ostomy? I think once you have your ileostomy done you will probably want to keep it cause the uncertainty of J-Pouch surgery is a risk with crohns. Good luck and keep us posted, only too happy to answer any questions you may have
Take care
Doreen

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 7/9/2010 12:40 PM (GMT -6)   
Thank you Doreen. So much I don't know. I scheduled an office visit with my surgeon for 7/21. She's told me I could do either, the temp or permanent, but definitely and ileostomy. My rectal area is a disaster, even with nightly suppositories. I guess I am too afraid to do the permanent. Maybe after I have the ostomy for a while, I won't want to ever go back. Then I guess that would mean a second surgery. I just don't know enough, I guess. I hate having to make the choice... It's helpful to read the forum and the people who have learned life is better on the other side of the ostomy. I'm sure it has its issues too, but at least I could stop worrying about making it to the restroom on time...
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09

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