Time for an End Ileostomy?

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ucfree
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Date Joined Oct 2005
Total Posts : 291
   Posted 6/22/2010 8:55 AM (GMT -6)   
Hi everyone,

I've been gone for about a year ... since my takedown surgery I've been with this JPouch and it's been on and off with the Pouchitis. Unfortunately my GI now thinks that I've become antibiotic resistant (refractory pouchitis) and it would be best if I considered an ileostomy.

I have a bunch of questions:

1. What should I expect from the surgery? The pain level is the same as having the first surgery with the colon being removed?
2. What is the recovery period for this type of surgery?
3. Would I need to take medications gain after having an end ileo?
4. What complications and issues can I expect to have if I did have an end ileo? Skin breakdown etc ... ?

Thanks a lot ... this has been a tough year and I've seen the inside of a hospital more this year than ever before.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/23/2010 6:55 AM (GMT -6)   
ucfree~sorry to hear you've had a year of hospital visits:(

You can expect about 4-6 days in the hospital...if it's laparoscopic, you might be up and eating sooner. From people I've spoken to who have had their pouch removed it's about the same level as step 2 (of 3 step procedures).

Once your UC is gone...it't gone! You shouldn't have to be on maintenance meds.

I have an end ileo now (temp loop for 8 years before it) and don't really have issues with any skin breakdown. Finding the right appliance might take some trial and error...gaining/losing weight can make adjustments necessary...and then there is always user error!!! Overall, once you get your system down, it should only take about 5 minutes to change your appliance 1-2 times a week without problems:)

Have you been on j-pouch.org? Maybe suebear can give some suggestions, too.

Hang in there!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/23/2010 7:19 AM (GMT -6)   
Thanks Ohio,

ya I'm on jpouch.org asking the same questions ... so confused I don;t know what to do.
:-/

ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/23/2010 10:05 AM (GMT -6)   
Hey Ohio .. have a question about the temp ileo.
Does that mean a loop ileo and leave the Jpouch connected for 8 yrs? Is that what you did? Is the loop ileo harder to manage than the end ileo?

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 6/23/2010 4:27 PM (GMT -6)   
I'm on the j-board and have the same problem as you. My doctors told me that as the pouch ages they are seeing more and more of this problem, although yours is only a year. Mine is 10 and I'm terrified of more surgery. You chould try remicade-I had a bad reaction to it so I'm srewed. 
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000
Emergency j-pouch surgery
Multiple complications
J-pouch redo- July 3,  2001
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/23/2010 4:50 PM (GMT -6)   
I never had the option to try a j-pouch shakehead

For me, everything was still intact while I had the temp loop ileo, which relieved the bathroom problem...but the disease continued it's course even with meds skull

Is your doc thinking of leaving the pouch and making your ileo temporary (like before your takedown)?

susans53~sorry you are going through pouch problems, too!

I have met 20+ year j-pouchers who have had some problems at that stage...they have done/are doing reconstruction and giving it another shot. I think there was perm ileo options but they aren't giving up...yet! Hope both of you can get things straightened out.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/23/2010 5:15 PM (GMT -6)   
NASCARon, OHIO!!!!!! Thanks so much for the great answers :)
I'm planning to have a temp end ileostomy, leaving my JPouch, rectum and anus intact. I'll probably want to go this route to make sure I am ok with the ileo and then have another surgery later to have the rest removed if I am blessed with good health on the ileo :)

I wanted to try remicade or humira but my GI thinks that's not a good idea because I tried it when I had UC prior to my surgery and they did not work ... *shrug*

I think I am starting to accept the fact that I am going to have this done and it will give me back my quality of life ... right now I feel sick all the time!!!!

Question about leaving the JPouch and anus intact and getting an end ileostomy. Are there potential consequences of doing that? Since the pouch always has pouchitis ... would that affect my health in any way even if it's not in use? Also, would I have the same mucous discharge as I did when I had the temp ileo in step 1, until I actually have the JPouch removed?

susan: I feel ya ... I'm starting to accept it ... watch the uoaa.org video on living with an ostomy ... it's not that bad if you accept it is what I'm starting to realize.

Thanks!

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/23/2010 6:39 PM (GMT -6)   
I had pouchitis while I had the temporary ostomy and still felt the rectal pain/pressure, nausea/vomiting, and had discharge
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again
6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement
Flagyl 500mg (3/day), Prednisone 40 mg, Culturelle, D, B12, Iron (2/day), Starting Humira soon


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/24/2010 4:48 PM (GMT -6)   
bump!

Question about leaving the JPouch and anus intact and getting an end ileostomy. Are there potential consequences of doing that? Since the pouch always has pouchitis ... would that affect my health in any way even if it's not in use? Also, would I have the same mucous discharge as I did when I had the temp ileo in step 1, until I actually have the JPouch removed?

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/24/2010 5:43 PM (GMT -6)   
I don;t know if you saw my answer, but yes, you can still have pouchitis when it is not in use. I had it 2-3 times before takedown (in just 3 months). It was just as annoying and painful as it is now when I'm using the pouch
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again
6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement
Was on TPN and IV fluids 2/10-6/10
Flagyl 500mg (3/day), Prednisone 40 mg, Culturelle, D, B12, Iron (2/day), Lomotil (2 tsp 4/day), Lortab, Starting Humira 6/28


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/24/2010 8:56 PM (GMT -6)   
Pam: I did see the post :( So sorry for all that you have been through ... how are things now and what's the next step?

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/24/2010 8:59 PM (GMT -6)   
It's ok. I;m just one of the unlucky ones.
I'm still having a lot of problems. Mostly frequency (I go every 1-2 hours all day and night) and rectal pain/pressure. At least I'm not throwing up anymore and am off the TPN. I'm starting Humira on Monday and if I don't see improvement with that, I am probably being sent to the Cleveland Clinic.
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again
6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement
Was on TPN and IV fluids 2/10-6/10
Flagyl 500mg (3/day), Prednisone 40 mg, Culturelle, D, B12, Iron (2/day), Prenatal vitamin, Lomotil (2 tsp 4/day), Lortab, Starting Humira 6/28


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/25/2010 9:31 AM (GMT -6)   
I get treated at Cleveland Clinic Florida and have also been to CC Ohio to see Dr Shen. I stopped taking Cipro, Bactrim, Flagyl. Now trying Tindamax to see if that helps any .... I need to get thru the next month or so until I decide to have the perm ileostomy.

My doc for some reason doesn't want me to try Humira or Remicade ... not sure why ...

Let me know what happens with you ... maybe your experience can help me and vice versa...

ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/28/2010 9:12 PM (GMT -6)   
You wouldn't believe it.
My GI called today, the same one who didn't want to try Humira and said he spoke with Dr. Shen in OH (whom I had spoken with already), and recommends to try the Humira to see if that has any effect first.
So he's going to start me on Humira and he says we need to give it a solid 2 months before we can determine if it's working or not.

So here I was 99% prepped in my mind about going into a surgery and coming to terms with having an end ileo .. and now this! :)
I don't know whether to be happy, sad, or confused hehehehe

At least after this I know I can say we gave it our best if the Humira doesn't work!!!

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/28/2010 10:13 PM (GMT -6)   
Hope it works for you!
I stated Humira today
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Humira


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/29/2010 9:30 AM (GMT -6)   
pam: It's gonna take about a week until they get a prior auth from my insurance and get the meds to me and then there is the loading dose etc ... i hope it works for you .. let me know how it goes please ... I'm interested. :)

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 6/29/2010 10:44 AM (GMT -6)   
I hope the humira works for you. Although 2 doses of remicade did put me into remission I cannot take it anymore due to side effects. I am on canassa for now but have no idea how long this will last. I had an ostomy for a year and hated every minute of it but I'm actually more terrified of having more surgery at this point. Pouch removal is another major surgery and I have had too many surgereis, too many complications, etc, etc. BTW, I also had pouchitis while having the ostomy so I would have to have it permanent at this point.
I'm in G-D's hands and trying to acept it. I have tried everything. I only hope that if it does come down to removal that I don't get rediagonised with crohns and end up back to square one again.
I hate UC or whatever I have-I'm calling it the skinny disease.


UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000
Emergency j-pouch surgery
Multiple complications
J-pouch redo- July 3,  2001
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?

Post Edited (susans53) : 6/29/2010 9:49:00 AM (GMT-6)


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 6/30/2010 11:20 AM (GMT -6)   
Is it totally outlandish for me to be fedup with trying meds and at the point where I don't want to try the Humira anymore?
I mean, I'm fully aware that by getting an ileo with my pouch still intact could possibly give me some grief. I could have symptoms etc but I feel like I just need a break already from all of this.
The past year has been all about trying this med vs that and in and out of the hopital. if I can break that cycle I think I would be totally happy.

Am I going nutz thinking this way?

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/30/2010 11:57 AM (GMT -6)   
It is your body and if you are okay with a permanent ileo diversion...it's your decision.

I made all my choices and did them knowing I was okay (could live with it or sleep at night) with the outcome/course of treatment!

You are NOT nuts:-)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 6/30/2010 12:07 PM (GMT -6)   
No Pam, you are NOT nuts. In fact when I had this last flare up I told the GI to tell the surgeon just take the darned pouch out and be done with it but no........the GI and surgeon were like, you have to try more things. So now, I am suffering from an axiety disorder wondering when the next attack will hit since remi is no longer an option and after that expericence I would not even consider anything else. Personally, in your case with a CD diagoinises I would not leave the pouch in if you go that route. Also, you might still need to be humira anyway so at this point you have nothing to gain by taking out the pouch if intead the humira works. In my case everything is still showing UC but my GI is still looking for that CD marker, if I even have it-lol. Having an endoscopsy tomorrow.-More tests, more tests, can't take it either. It's just sad that we go thru this surgery only to find more problems.
Me, with the "skinny disease"
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000
Emergency j-pouch surgery
Multiple complications
J-pouch redo- July 3,  2001
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 7/1/2010 10:11 AM (GMT -6)   
Ok .. so I'm going to be meeting with my surgeon and will make a decision then. However I'm pretty sure which path I want to go down. You guys have been very helpful so far :)

ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 7/7/2010 11:23 PM (GMT -6)   
pam: how is the humira working out so far?
Met with the surgeon today and he is really a great man. He was understanding and realized that I needed some relief. He did mention to give the Humira a shot in case it does work, but he does understand that I am tired of trying things and just need relief at this point.

He suggested a temp loop ileo to give the pouch a rest and then we can re-evaluate things after the fact.

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/8/2010 7:54 AM (GMT -6)   
I've only done the first 4 shots so far. I do the other 2 loading doses on Monday. I also started Rowasa, so it's hard to tell which one is helping, but I think it's the Rowasa. I didn't do it for 2 nights and I was in the bathroom every 30 minutes to one hour. When I use the Rowasa, I am able to sleep 5 hours or more. I still go a lot in the mornings, but I am feeling better. I don't feel dehydrated all the time and I am getting out a lot with my son and enjoying living.
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Humira, Rowasa


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 7/9/2010 10:44 AM (GMT -6)   
Decision: Getting an ileostomy. Will keep everyone posted. Thank you for all your help!

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/9/2010 2:32 PM (GMT -6)   
Good luck!
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Humira, Rowasa

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