Which doctor does followup for j-pouchers?

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Lyonene
Regular Member


Date Joined Jun 2009
Total Posts : 64
   Posted 7/7/2009 10:12 PM (GMT -7)   
I'm only on step one, step two in September, probably step three just before Christmas. I assumed I would see my surgeon once a year and the rest of the time I'd see the ET or my GI for any issues that cropped up like rashes, pouchitis, etc.  In reading posts, I'm seeing few references to GIs at all and many to calling surgeons.
 
I'm curious who treats you, your GI or surgeon?  Whom do you call first -- does it depend on the issue? 

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5696
   Posted 7/8/2009 6:09 AM (GMT -7)   
I see my surgeon because that's what he prefers. I also live in a small town and our GIs don't have pouch experience. I get a scope and biopsy once per year from my surgeon and get an annual script for Cipro in the event I get pouchitis. It's really up to the patient as to who will do their follow-up so if you feel comfortable with your GI go there. I haven't seen my GI since surgery over 8 years ago and I kind of like it that way!

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


daylight
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 7/14/2009 9:39 PM (GMT -7)   
I had jpouch surgery in January, I have seen the surgeon twice since then and he told me he sees people every two years for follow up and scope. Unless there is a problem, and then I am to call his office. I don't see the GI anymore.
Linda

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/14/2009 9:55 PM (GMT -7)   
I knwo it's different, but I have a colostomy bag. I get regular check-ups with both. I will eventually move to 6 month check-ups with the surgeon and either 6 month or 1 year with the GI. For now it's about every 1-3 months until we get everything evened out.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Colozal. Failed Entocort. Failed Rowasa. Failed Steriods. Failed Steroid Enemas. Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira(severe reaction).
May 7th - Partial Colectomy - Sigmoid Rectal Ostomy - Partial Rectum left for possible re-connect later. Trying to get used to this new life with a bag.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 21 months old


Lyonene
Regular Member


Date Joined Jun 2009
Total Posts : 64
   Posted 7/14/2009 11:58 PM (GMT -7)   
suebear, that makes sense, surgeon preference in particular. I'm not particular either way but I guess that's one more thing I need to find out. I need to get a list going again!

Lyonene
Regular Member


Date Joined Jun 2009
Total Posts : 64
   Posted 7/15/2009 12:03 AM (GMT -7)   
Linda, thanks for sharing. I guess it's surgeon preference how often you see them? I do recall my surgeon saying I'd have an annual appointment for a finger check, as he put it. Now you've got me wondering if I even needed to seek out a new GI. I'm in the midst of requesting a referral to a new one and maybe I didn't need to bother. Hmmm.

Lyonene
Regular Member


Date Joined Jun 2009
Total Posts : 64
   Posted 7/15/2009 12:05 AM (GMT -7)   
Kaycie, even if it's different it's still interesting to hear how others are treated -- there is a lot of variance, it seems. I hope you're able to get everything worked out soon so you can spare yourself some doctor visits!

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/16/2009 9:20 PM (GMT -7)   
I normally post in the lupus forum. This caught my eye. My little brother (31 years old) has Crohns. He had a j-pouch about 12 years ago. He doesn't see anybody routinely. If he gets pouchitis, his former (pediatric) GI will call him in a script for Cipro. He has had 0 scopes/biopsies since the procedure was completed.

I have a question...do you guys go to the BR alot still after the procedure. My brother will get up 12-15 times a nite. He NEVER gets a full night of sleep. He goes alot during the day too. He has a wife and 3 kids and he's a very hard worker, but he is having trouble with holding a 'production' oriented job, when he has to run to the BR so much. Anybody else having this issue? Judy

daylight
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 7/16/2009 9:38 PM (GMT -7)   
I have had my j-pouch for almost seven months and I usually don't have to get up at night to use the bathroom. I go about 8 times a day, unless I eat or drink something that makes it more active, but I didn't have Crohn's , I had Ulcerative Colitis.
Linda

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5696
   Posted 7/17/2009 6:14 AM (GMT -7)   
MJLD,

Getting up 12-15 times per night is not normal and he should be seen by a surgeon. Was his Crohn's limited to his colon? Typically Crohn's patients don't fair well with a jpouch as the disease just manifests itself in the small intestine.

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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/17/2009 2:24 PM (GMT -7)   
Thank you for your replies. We live in a very small town in South Mississippi, so my brother's case was extremely exacerbated by the time my parents got him to Children's in New Orleans. He was diagnosed with Crohn's and UC. The docs said he had ulcerations and granulomas from the top of his gi tract to the bottom. They first did a total colectomy and removed 6 feet of his small intestines and his rectum. Then he had two more surgeries to complete the j-pouch.

I am so worried about the amount of times he goes to the BR and it affects his quality of life. He still also has alot of pain. He's a very tough guy and don't complain much at all, but I KNOW him and if I pin him down he'll admit it. He has a wife and 3 small children and I just wish so much he could be healthy.
..
**By the way*** sorry I hijacked this topic!!!  I should have started my own thread.  I'm really sorry...I appreciate your kindness.

Post Edited (MJLD) : 7/17/2009 10:31:25 PM (GMT-6)

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