Slowing down output

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pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/10/2010 9:01 AM (GMT -6)   
There has got to be something to control this. I am desperate. My doctor thought that once I had the takedown, things would slow down because my ostomy was high in the small intestine. It is not slowing down. I was told to expect up to 12 BMs a day. I go 1-4 times an hour around the clock. I get NO sleep. I go to the bathroom, lay down, and already have to go again. It is painful when I have to go. I CAN hold it, but it hurts. If I go anywhere, I have to go to the bathroom before leaving, go when I get there, go in the middle of shopping, go again before leaving. I can't be in the car too long. I can't wait in lines. I can't do this anymore.
We've tried 8 imodium a day (capsules and liquid), Questran, Lomotil (capsules and liquid), and Octreotide (Sandostatin) injections and infusions. Nothing makes any bit of difference. Honestly, I go just as much on all these meds as when I take nothing. Diet doesn't matter. If I eat a banana and rice, it goes through just as fast as if I ate something like a taco. I doubled my Lortab one day, and I made it 3 hours between going for most of the day. I told my doctor that Lortab seemed to help, so he prescribed me 5 days of it a couple weeks ago. It seems he doesn't want to prescribe it again. I have to be hooked up to IVs 19 hours a day to make up for what I am losing and I STILL end up in the hospital every other week for 4-5 days. Being hooked up all the time makes it really difficult for me to take care of my 13 month old son because he wants to pull at the lines.
How is this better than having UC?

Oh, and my doctor started me on a gluten free diet last week.
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 with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet

Post Edited (pam222) : 5/10/2010 8:21:43 AM (GMT-6)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/10/2010 9:51 AM (GMT -6)   
Ask for tincture of opium.

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/11/2010 8:51 AM (GMT -6)   
wow thats horrible!
I hope you get this fixed!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 5/11/2010 9:45 AM (GMT -6)   
Please let us know what happens. I don't know what can help you .. I wish i could

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/11/2010 2:04 PM (GMT -6)   
Well, I'm going back on the Lomotil instead of the Imodium to see if that helps anything. If anything, it's $3/month for 10 bottles for the prescription versus spending $3.99 every 3 days for Imodium bottles
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 with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 5/11/2010 5:42 PM (GMT -6)   
    Oh Pam...I am soooo sorry you are still suffering so much.  I wish there was something I could do to help you.  I just keep praying hoping God will hear me.
    I am going ahead with the ileostomy.  First I have to have a stress echo because of my age I guess.  I call Dr. Fry's office (he's going to do the surgery at Pa Hospital..I would have preferred Univ of Pa Hospital but his office is at Pa Hosp) tomorrow to set up the date.  Most likely it will be in about six or seven weeks.  He wants me off the Humira at least six weeks and my last injection was Wed.
     Are you still on all those meds listed at the bottom of your post?
 
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days.  Prednisone, Asacol, Rowasa enemas.  Two year remission. Flare..switched from Asacol to Colazal.  Two year remission.  Started 6MP in 2002.  Flared yearly from 2003 to May of 08.  Hospitalized for ten days in May of 08.  Flaring more often since.  Off 6MP. Remicade failed. Now on Humira, Colazal, 10 mgm of prednisone, Calcium with D, cort enemas and suppositories, Canasa.  Doesn't seem like Humira is working.  Surgical consult on May 11th.  Sick of being sick.

 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/11/2010 7:08 PM (GMT -6)   
Thank you, Christine. I hope your surgery is successful and you can put all the suffering behind you.
Yes, those are my current meds, except Lomotil instead of Imodium
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 with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Lomotil 1 Tsp. (4/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 5/11/2010 9:20 PM (GMT -6)   
Pam - It's horrible that you're going through all this and I have to give you kudos for having such a great attitude with everything that you're going through.

Just out of curiosity, what type of pain do you feel when you try to hold it? Is it a sign of something more? I wonder if you can hold it for a little bit longer if you would absorb at least a little more and not get dehydrated which leads to all sorts of other fun issues for you.

I know that compared to you I've had a picture perfect experience but my surgeon told me I had to hold it for the first week for at least 5 minutes and for the first 4-6 weeks for at least an hour if I could so that my pouch would expand. It was really hard at first but has gotten easier although I still have what feels like abdominal twinges and sometimes worse when I hold it. He said that your pouch grows within the first 4-6 weeks (maybe a little more/less depending on the person) and if you don't get it to expand during that time frame you will be stuck with however many bm's you have/day because of your pouch size.

What are you eating when you eat? Do you maybe need to solidify things more or have a higher sodium intake since you're getting so many fluids so that they absorb and don't just flush through your system?


Those are the only thoughts that I have as I know you're trying anything you can. I hope that you can find a solution and get this resolved so that you can have a wonderful summer!
Ducridr - 36 - female

Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.

J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 on 1/4/2010
Surgery #3 scheduled for 3/23/2010


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/12/2010 7:27 AM (GMT -6)   
Well, my surgeon told me to go as soon as I feel the urge because he was so worried about a reoccurence of the fistula. At first, in the hospital, I couldn't even go and had to be drained by catheter every 4 hours and my pouch was holding quite a bit. I am trying to hold it now and can for quite a long time. I always wait at least a little while so that I am letting it stretch some. It can hold a good amount. Sometimes when I go it's a small amount, but there are times it is a lot of liquid. The pain is a terrible cramping and pressure feeling. The pressure gets very bad when I have pouchitis, which I have had 3 times already and am still on Flagyl for.
Now I'm concerned because my surgeon has never advised me to try holding it. He just said "pamela, if you get another fistula that will be the end of your pouch."
I've tried low residue foods, which didn't make any difference. Now I'm on a regular diet, except gluten free, so I can't eat breads and crackers and things like that. I do eat fruits and veggies, which is probably not good, but with gluten free it's hard not to. I eat mostly chicken for meat. I eat potatoes and bananas and rice, and those don't slow anything down either. Right now, I typically have rice chex for breakfast, and some sort of meat and veggie for lunch and dinner with yogurt or fruit for snacks.
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 with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Lomotil 1 Tsp. (4/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/12/2010 8:52 AM (GMT -6)   
Pam,

Don't worry about the hold it/ no hold it philosophy. My surgeon was of the "no hold it" technique and I am just fine. The pouch will expand on its own. Each surgeon seems to have their own preferences for recovery; some encourage the use of metamucil and imodium from the get-go (mine did), others prefer their patients wait and let the system adjust on its own. There is no right or wrong.

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


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/12/2010 9:15 AM (GMT -6)   
Thanks, Sue!
My surgeon doesn't normally advise imodium immediately, but he did for me because of how severe my output was with the ostomy and how dehydrated I get
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 with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Lomotil 1 Tsp. (4/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet


Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 5/12/2010 12:37 PM (GMT -6)   
Pam, I am on gluten free too. Try making your own gluten free/yeast free rice pancakes and yeast free rice bread - you can buy the mixes from the health food shop. Rice cakes are good - potatoes (I keep mashed in the fridge most of the time). Rice itself helps too (I eat the gooey white kind!).

These help slow me down - as does metamucil - as does codeine phosphate. I cannot believe he will not give you codeine phosphate or tincture of opium when you are on a home IV - that seems mad to me (not as a pain reliever, but to slow you down - it has saved many people's pouches and quality of life). What about another opinion? If I forget my codeine and metamucil, I am very quickly stuck in the bathroom and on the road to major dehydration and tachycardia. It might not work for you - but it seems very odd not to try.

Also - why has he not suggested metamucil or a similar fiber product? According to the boards, almost all surgeons prescribe this at some point - particularly if you are struggling to this extent. It literally absorbs water in your gut - which is what you need.

I tired immodium - but it barely made any difference and seemed to mess with my bladder.

Good luck - you must be pretty frustrated!
Diag proctitis 97 - major flare and extension to left sided colitis Aug 2006 - present.

I bled every day from Aug 2006 (I quit smoking in June 2006) to Jan 2010.

Imuran (Azathioprine) game me liver damage. LDN no luck.  Asacol and mesalazine enemas - seemed to make worse. Lots of Prednisone :(  No luck on drugs!

JPouch, total colectomy and ileostomy (part 1) completed Jan 2010 :)
Takedown (part 2) April 15 2010.

UC no more!!!
 


Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 5/12/2010 12:44 PM (GMT -6)   
Also - have they thought about pouchitis?
Diag proctitis 97 - major flare and extension to left sided colitis Aug 2006 - present.

I bled every day from Aug 2006 (I quit smoking in June 2006) to Jan 2010.

Imuran (Azathioprine) game me liver damage. LDN no luck.  Asacol and mesalazine enemas - seemed to make worse. Lots of Prednisone :(  No luck on drugs!

JPouch, total colectomy and ileostomy (part 1) completed Jan 2010 :)
Takedown (part 2) April 15 2010.

UC no more!!!
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/12/2010 12:59 PM (GMT -6)   
I've had pouchitis 3 times already where it was really inflamed. Last time I was in the hospital, he did another scope and there was still slight inflammation.
I'm going to ask him again about codeine or something else because the Sandostatin is not doing anything. When I was in the hospital last, my surgeon was out of town the first few days and I talked to the surgeon who was on call for him and seeing me and he told me that it wouldn't do anything. He was like "well, it can constipate people" and I said "well, yeah, that's why I want it" and he said "it acts on the colon."
My surgeon will probably call me tomorrow because I had my blood drawn today and he usually calls when he gets the results. He has never suggested Metamucil, but the Questran is supposed to absorb the liquid
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 with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Lomotil 1 Tsp. (4/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/13/2010 2:13 PM (GMT -6)   
Well, good news, my surgeon just called and the blood tests and recent biopsy showed no indication of Crohn's, which my surgeon had began worrying about. He is contacting my old GI doctor to see if he has ideas
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 with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Lomotil 1 Tsp. (4/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet

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