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tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 12/13/2007 2:51 PM (GMT -6)   
Had my ileostomy surgery in August after coming very close to dying, they kept the rectum to form a J-pouch later on. Felt great right after the surgery hardly any pain and in September began having horrible rectal spasms that have never ceased. Every month has been a struggle with pnemonia, tailbone pain, back pain, extreme hair loss, anemia, exhaustion and I am beyone frustrated with having been sick since June. I can deal with having the ostomy, but to have the UC symptoms on top of it is about to drive me insane! GI put me on B&O suppositories, Canasa, cortisone enemas all haven't worked. I was told by my GI that I have Undetermined Colitis, they think it looks more like Crohn's but are still unsure yet I would be able to have the pouch surgery. Went to my family doctor and he put me on oral prednisone and Cipro to see if that will give me some relief, it's only been 3 days, but it's not helping. I am due to have the pouch created on January 14th and my fear is that they are going to see that the rectum is too inflamed and will close me back up to heal--I plan on telling the surgeon that if this is the case to take out the rectum and I will live with the bag. Has anyone else had problems like this and if so, how did you keep from being a basket case?
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 12/13/2007 3:25 PM (GMT -6)   
I could have written that post. Seriously. I have been sick since June, had my surgery in August cause I was basically dying, after surgery they decided my UC was indeterminate, and I've had rectal spams and a lot of bleeding. My doc said it could just be the UC in your rectum and tiny piece of colon they leave to form a J-pouch. If I understood correctly, when they do the j-pouch they remove some of what was originally left, because the j-pouch is really formed from your small intestine. They just leave stuff so your muscles stay strong, and you're not sewed up for the j-pouch surgery. According to my Doc, the UC symptoms will go away after the surgery. The thing we indeterminates have to worry about is pouchitis if we actually have Crohn's. UCers can develop pouchitis, but Chronies are more susceptible. I'm no Doctor, but that was the way I understood what my surgeon explained to me. He didn't seemed concerned with the UC symptoms now.
It sucks though. But, if there's a light at the end of the tunnel, it's more worth it, right?
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 12/13/2007 4:13 PM (GMT -6)   
Have they given you any meds for the spasms? How are you dealing with it? I have to grab something everytime I evacuate and I try to moan as quietly as I can. When are you having your surgery? Will yours be a 2 or 3 step? Where are you having it done at? I was also told that if it is UC, we still have a risk for rectal cancer after the surgery.
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 12/14/2007 10:30 AM (GMT -6)   
No meds for spasms. But mine do come and go. When they come they are bad, but I do get relief, usually for a couple days, when they are less severe. When they are severe, I do the grabbing something thing, too. I love handicapped stalls with the hand railings - those work well! For some reason, when I am in big time pain, really grabbing and squeezing something helps tons. Also, I think I have become pain resistant after my battles with UC and a failing liver. I have an appointment in Janurary, and my Doctor will tell me then if he thinks I'm ready for surgery, and then we'll schedule it. He's saying it will probably be two step, but he's not 100% sure yet. I was hoping for a Janurary surgery, too, but looks like I may have to wait longer. I'm having it done in San Francisco at Kaiser - they have a really good surgeon there.
It's so frustarting - one of these days, I just want to be healthy!!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 12/14/2007 11:01 AM (GMT -6)   
Since you still have your rectum, having continued UC is not uncommon. It will get better but only after you get rid of that nasty rectum! All of us who had UC and have j-pouch surgery do have to have annual biopsies that screen for cancer. Only a small amount of rectal cuff (1-2cm) is left to attach the new pouch to the anus. As far as I know there have only been 2 documented cases of rectal cancer in pouch patients and there are thousands of us out there. This is something I just don't worry about. It sounds as if you have been throught the wringer and it's probably hard to believe that it will ever get better but it will. Remember, even after your last surgery, step 3, still expect to have a year of recovery and adaption to your new plumbing.

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
 


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 12/14/2007 1:49 PM (GMT -6)   
suebear - what's it like? I have heard a year, but how long does it take to be "functional"? Whenpeople say incontinence, how bad does it get? Just wondering since I'll be going through it in a couple months!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 12/14/2007 3:21 PM (GMT -6)   
I am curious as well how long I might need to be off work after the 3rd step, if all goes well it will probably be done in March or April. My son is graduating highschool this year and we will be having an open house and I want to make sure that I am strong enough to pull it all together by June. I am trying so hard to be patient and some days are easier than others. I am grateful for finding this forum, just knowing that there are others going thru the same thing is a huge help and the advice has been so helpful.
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 12/14/2007 5:02 PM (GMT -6)   

I was off work 3 weeks after each surgery.  I had a 2-step.  My recovery from surgery was quicker than the norm (about 6 weeks) but the adaption to the new plumbing took about a year.  Expect increased frequency, sore perianal skin, spasms, and maybe some incontinence.  What really takes time for most of us is adapting to some foods.  For me it took about 6 mos to successfully eat fresh fruits and vegetables without them racing through my system and causing discomfort.  Just remember, you j-pouch has to learn how to act as a colon.  It takes time.  Measure your recovery in 6 week increments.  It's two steps forward and one step backward in that first year.  This does not mean that you can't do anything, as I said I returned to work, went hiking, traveled through Europe, and did a half marathon all in the first six months post surgery.  Some of those things were hard to do but I persevered.

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
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 12/14/2007 5:06 PM (GMT -6)   
I cannot add any words of wisdom, but I did want to let you know that I am thinking about you and wishing you the best. You have found a great place to ask questions and learn a ton!!! I sure have.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 12/17/2007 4:56 PM (GMT -6)   
Thanks to all for the replies

My boss told me today that I need to think about the future surgeries. I used up all my paid time off and sick bank from July to October and I guess you're only allowed so many hours off in a 12 month span due to the FMLA (family medical leave act) or they will not hold your job for you. I will probably have enough hours to keep my job after the second surgery, but she says "you might want to wait to have the last surgery" Which would mean I couldn't have the takedown until next October! I work at a Catholic Hospital where they preach about compassion and concern and I'm being told that I need to decide whether or not my quality of life is as important to me as keeping my job! I only work 3 days a week and I had to tell my boss that I can't predict how long I would need off for the next two surgeries. Anyone else have this happen and what did you do?
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08

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