Those With Crohn's Colitis and Permanent Ileostomies . . . Do You Still See a GI ?

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CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 382
   Posted 10/8/2011 10:22 PM (GMT -7)   
I had my surgery on July 14 and all evidence points to the only involvement was in my Colon.   Upper scope and small bowel follow-through show no signs of involvement there.  And, my GI and surgeon both went about 8 inches into my small intestine during my last and final colonoscopy [Dec 2010] and during my surgery and found no involvment.
 
My regular doctor thinks I need to see a GI since Crohn's is not curable and it could happen again, even though there is only a small chance, like 20%.
 
I have seen some comments from those with CC about being drug-free and feeling great. 
 
So, do any of you still see a GI regularly?

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/8/2011 10:33 PM (GMT -7)   
I have a permanent ileostomy and have crohns/colitis after my surgery 2 years ago I saw my GI and he said there was no need to see him on a regular basis unless I had symptoms again, which so far so good. So I don't see why it would be necessary to continue unless you felt you needed to. Hope you stay disease free :-)
Doreen

katiesmommy1
Regular Member


Date Joined Aug 2009
Total Posts : 94
   Posted 10/9/2011 7:00 AM (GMT -7)   
My daughter was first diagnosed two years ago with Inderterminate Colitis favoring Crohns. They said that usually in small children (she was only 3) the disease presents itself as Ulcerative Colitis but then in most cases it can change to Crohns disease after a few years. During her surgery all of the surgeons said that her small intestines were fine, no disease at all.
So she was drug free for two years, but then a few months ago we noticed white spots on her stoma, (first sign of crhons) but they would come and go so we didn't think much of it. Her GI said that as long as she didn't have other symptoms she was fine. Well last month she experienced severe pain, D, and cramping.
Needless to say now she is diagnosed with Crohn's disease and is on a maintenance drug.
Even before this episode though we were told that we should meet with our GI once a year around her birthday. I think in the beginning you should definitely keep in touch with your GI. It's always better to be safe than sorry.

flchurchlady
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Date Joined Jul 2007
Total Posts : 2764
   Posted 10/9/2011 7:17 AM (GMT -7)   
CJ,
I never had Crohn's in my small intestine either, so my GI said that there was no reason to be on any maintenance meds or to even see her unless I started having problems. It has been 5 years since my surgery, and so far so good, no problems. I hope you stay disease free, too.

Katiesmommy,
I'm sorry to hear that it showed up again in Katie. Which maintenance medication is she on and is she in remission?

Take care,
Cece
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3123
   Posted 10/9/2011 7:57 AM (GMT -7)   
My gi said it would be once a year when I settle down.... next appt was for 6 months.... he is the one of my docs that I trust the most, so I'm not ready to have him all the way out of the loop...
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1053
   Posted 10/9/2011 8:58 AM (GMT -7)   
I still see mine because I am involved in a study after one of the drugs I was on. It's free and helps with research for future patients, plus I like my GI, so I just go like once or twice a year. If I wasn't in the study, I would probably just go in on an as-needed basis. No point to go if you're feeling great. I would suggest having a GI in your back pocket just in case something pops up, but don't make an appt regularly unless something is wrong.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

katiesmommy1
Regular Member


Date Joined Aug 2009
Total Posts : 94
   Posted 10/9/2011 10:00 AM (GMT -7)   
flchurchlady,
My daughter is on Azathioprine and Prednisolone right now, although we are hoping to wean her off of the Pred. in the next month or so. We have to make sure the Aza. is working before cutting the pred.

So far so good though, keeping our fingers crossed and hoping that we finally found something that will work. in the past we've tried everything even Remicade and nothing worked, so we really need a miracle. She's had already two surgeries and she's only 5.

CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 382
   Posted 10/10/2011 6:50 PM (GMT -7)   
Thanks, everyone. I am going to make an appt to see a new GI, as I wasn't real pleased with the two I have had in the last 5 years. My surgeon is going to recommend one, I just need to let him know I am ready.

Oh katiesmommy, I feel for Katie and you. I can't imagine what children go through with Crohn's. I was in my 50's before it reared it's ugly head with me.
57 year old Grandma in the Buckeye State.
Diagnosed in 2006 with UC and in 2007 with Crohn's Colitis.
June 2010 had 10 inches of my colon removed due to a stricture.
Refused Remicade and Humira and opted for what I was certain the end result would be.
July 2011 had a proctocolectomy and permanent ileostomy without reservation.
My stoma Lillie and I are doing great !!!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2764
   Posted 10/11/2011 5:34 AM (GMT -7)   
Katiesmommie, my heart goes out to you and Katie. You can count on me to pray for a miracle.
Hugs,
Cece
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Roni-Ro
Regular Member


Date Joined Oct 2011
Total Posts : 63
   Posted 10/13/2011 1:44 AM (GMT -7)   
i was wondering the truth of this also....my gi was great and HEAVILY involved and stopped by my hospital room every day....the second the decision for surgery was made: POOF. nevver heard from them again....and that was 3 weeks ago....on of the last times i talked to him he did say id should see him here adn tehre, just becaue we dont want to have to worry about crohns (i was pretty definitively UC), as they said people can go 15 yrs thinking they only had UC then all of a sudden theres a fistula or something else indicitive of Crohns..........hmmmmmmm........
DX'd with UC beginning of December 2010
Prednisone induced remission with Asacol 4800mg/day for maintenance
Remission from February '11-August '11
Major flare resulting in complete removal of colon on 9/21 (Surgery 1 of 3 for J-pouch. Surgery 2 and 3 TBD).

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1008
   Posted 10/13/2011 7:16 AM (GMT -7)   
I had my ileo done 20 years ago and have always seen my GI minimum of once a year. Unfortunately my CD also involved major small bowel problems and so had to go on azathioprine in 1995 to keep it a bay. Mostly it is a quick 10 mins appt to say everything is fine and no problems but if anything starts causing problems then I see him more often.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, numerous surgeries for abscessses & strictures. Humira - very bad permanent side effects incl joint pain, hair loss, fatigue & nreve damage. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium.
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