New ostomy, no more colitis!!

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Numb78
Regular Member


Date Joined Sep 2007
Total Posts : 63
   Posted 6/17/2008 7:39 PM (GMT -6)   
Well hello all, I guess I'll be posting my questions over here instead of the ulcerative colitis board from now on... Anyways below is a little history on how I ended up with my new bag..

After trying all the colitis meds right up to Remicade nothing was working for me so I started to talk to the docs about surgery... In the last few months I have been to the ER many times for pain and dehydration and on the last trip I was admitted to the GI ward. Well 2 days after I was admitted I woke up with the most unbelievable blinding pain I had ever had in my entire life, on top of that I was vomiting some real nasty black stuff. The GI doc was paged immediately and a CT scan was ordered. Sure enough during the CT scan they discovered that my bowel had actually perforated and believe me this is an unbelievable pain that I don't ever want anyone to experience. So given that the surgery was no longer an option and it was time to say good-bye to the old colon and colitis.

So now I'm learning to live with the ostomy bag and waiting for the pathology results to confirm 100% that it was colitis and not Crohn's. After I get better I guess I have to make the decision whether or not to have the J-pouch option. I probably will have the J-pouch but after being sick for so long I don't know if I'm ready to run back for another operation as soon as I'm feeling better.

I guess my point is that on one hand I'm a little upset that I had to go through the surgery but after being in a very bad flare for a year I think this will give me some of my life back. I have lost so much weight and been through too much, as of right now I'm 6' tall and weigh 130lbs, I spent the last year chained to a toilet, not working not doing anything. I can't wait until I'm feeling better and able to get back into life. I am almost happy that the surgery had to be done on an emergency basis as I didn't have any time to think or worry about it.

So I'm kind of wondering what length of recovery time is considered normal for everyone? I don't expect to be running marathons in the next month or anything I'm just wondering what kind of time frame I can expect to be able to walk around and such without pain and discomfort.
29 year old male, diagnosed after bad flare in Summer 2005, quickly brought into remission by pred and salofalk. 2 years symptom free after that!!
Currently in a flare since summer 07 - I desperately miss remission!!!

Current Meds: 40mg of prednisone after IV steriods during hospital stay, 4000mg salofalk, calcium supplements, Pantoloc, Buscopan, Clonazopam, Cortenema
Started 100mg Imuran Jan 15/08 - no noticeable effect yet... aside from nausea, vomiting, fatigue...
Started Remicade May 21/08... results yet to be seen, but hopefully this will do the trick..


chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 6/17/2008 8:45 PM (GMT -6)   

I think that you are really fortunate that you were in the hospital when it ruptured.  The fact that your colon busted really supports the fact that you have been really sick so I bet you are glad that it is over.  I had surgery almost 4 months ago.  Although my surgery was elective, my surgeon told me that my colon was like tissue paper so that confirmed to me that I was glad that I did it.  I was pretty sick before the surgery.  I have found the recovery pretty easy.  I was able to go back to work within 30 days (although it was not easy, I was able to do it).  The ostomy is certainly weird but I have adjusted much better than what I ever thought I would.  I don't "like" it but I do like not feeling so sick anymore.  Like you, I ended up in the hospital too much with colitis so I am thankful that is over. As for your weight?  I lost a good amount of weight with colitis but now that I can eat what I want.....I am gaining weight that I wish I wasn't so I am confident that you too will get your appetite  and re-gain atleast some of your weight back.  I believe that everything is looking up for you know that the burden of having a sick colon is gone.  You may miss your colon but somehow feeling healthy eventually outweighs that loss of your colon.

You are doing great so just keep up the good work


Pancolitis - July 2006
Surgery - Temporary ilestomy on 2.25.08 at Cleveland Clinic. Next surgery in 6 months
Medications:  Predisone - 5mg (and tapering to zero)
Supplements:  multi-vit, calcium
Reason for surgery: Steriod dependent and allergic reactions to imuran and 6mp. Elected not to try remicade.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/17/2008 8:52 PM (GMT -6)   
well it took me about a month to get to feeling sort of normal, and then about three months to have a good deal of energy back and now, a year later i have all my energy back, plus some and am super happy! having an ostomy is not my fav thing in the world, i mean i dont think anyone's dream in life is to poo in a bag, lol. But NOONE's dream in life is to be sick all the time, and having the bag is sooo much better than UC. I know what you mean about being gald it was an emergency surgery. WHen i was trying to make the decsion i was actually hoping that i would get toxic mega colon so that i would not have to make the desision myself. It was the second hardest decision i ever made, and at that time it was the hardest. Looking back i wish so much that i had done it years and years ago.
As for the pain and such, it does take a while for that to go away. After being home for two days i was off the pain meds almost completly, i think i took one at night a few days. But none during the day at all, i didn't need them that much. I also had my bottom sewed up, so i had that pain to deal with also, and as a result had a horrible backache the whole time, you didnt' have that so that takes part of the pain i had away. IT will stay tender for probably a few months, not sore just kind of funny feeling to the touch.
All in all i think you will be much happier!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/18/2008 4:59 AM (GMT -6)   
Numb,
Welcome to our little corner of the world. I'm so sorry you had to go through that awful experience. It sounds like you're very lucky to be alive.

I got rid of my diseased colon two years ago after being sick with Crohn's for 7 years and have not looked back. Life is so good when you're healthy! I have put on some much-needed weight, mainly because I'm absorbing nutrients now, plus I have the energy to exercise again.

The recovery time from surgery varies. I was out driving after two weeks and felt really good after six weeks. My advice is to take your pain medicine if you need it, and rest when you feel like it. Your energy will return, and once it does, you are going to feel as good as you did before you were ever diagnosed.

If you have any questions about anything, please feel free to ask. We're all here to help.

Take care,
:-) Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 6/18/2008 4:59 AM (GMT -6)   
Numb78 asked...
So I'm kind of wondering what length of recovery time is considered normal for everyone?
As long as it takes for you to recover is the right 'normal' amount of time for you :)  Everyone is different, some people were really sick going into surgery, others were relatively well. Don't judge your recovery against everybody elses.
 
As a general rule of thumb, most people are back at work within 6 - 8 weeks (although not fully recovered). Some people are back sooner, some take a little longer. You've had a major operation, give yourself time to heal and try not to compare your progress with others :)
 
Good luck.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 6/18/2008 7:53 AM (GMT -6)   
Don't feel that you are to blame for the loss of your colon. It's a fact that 20-30% of those with UC will have refractive disease that no amount of meds can control. We fall into that group. I went two years being sick with refractive disease and in hindsight I wish I would have opted for surgery in that first year. I lost 2 years of living and try as I might I can't get that back. Take care of yourself, be patient with recovery, and enjoy each new day of good health.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 6/18/2008 11:04 AM (GMT -6)   
Suebear, I am also considering surgery. After 7 years with UC and after failing all medicines including 8 infusions of Remicade I feel a J-Pouch could be the best way out.

I have had 10 bm/day for the last 3 years all my doctors have hinted at surgery for a long time and I think they maybe right.

I have a question for you - Is there a possibility that I could go for a J-Pouch surgery and end up with a permanent Ileostomy because of some complication?

Also how painful is the surgery?

And can you feel that you are without a colon after having a J-Pouch?

Thanks

G
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