This doesn't seem right...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 2/2/2010 6:39 AM (GMT -7)   
Last night I kept waking up with the feeling I had to go to the bathroom. It was really uncomfortable and the pressure kept building up. Then, when I went to pee, a lot of liquid came out my butt. This has happened twice already this morning. This shouldn't be happening when I have an ostomy, should it?
I've also been really sick again and throwing up a lot, unable to eat or drink, and feeling really weak and shaky. And I've been getting sharp cramps.
I swear I am never going to get better. Just when I'm feeling ok, something else goes wrong.
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months until we can try the next surgery again
Imodium (4/day), Questran (3/day), Zantac (2/day), Zofran (as needed)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5696
   Posted 2/2/2010 7:09 AM (GMT -7)   
Pam,

This is totally normal! And don't be shocked if you sometimes see tinges of blood or if you have a small bowel movement with your ostomy! The temp ostomy is created so that half your intestine pokes out your belly and the other half goes down to your pouch. Food will bypass the ostomy and go down the pouch and be evacuated through your new plumbing. Those darn CR surgeons never tell patients to expect this!

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 2/2/2010 7:12 AM (GMT -7)   
Thanks! He never mentioned it at all and just assumed everything went out through the ostomy. I would have tried to "go" if I would have known it was normal. I just kept wondering why it felt like that all night.
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months until we can try the next surgery again
Imodium (4/day), Questran (3/day), Zantac (2/day), Zofran (as needed)


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 2/2/2010 7:39 AM (GMT -7)   
As suebear said - the mucus is totally normal even with your end ileo and there's even more with the loop. However, your pain sounds like a blockage from what I've read of the symptoms of a blockage. I'm sure someone that's had one or has better knowledge will come along and give better information. What kind of output are you having in your bag? Is the pain constant or does it come in waves? Is it moving or in the same place? My understanding is that if it's coming in waves it's a typical sign of a blockage. My partial blockage I could feel it move through as the pain migrated with the blockage. Walk, drink hot tea, drink grape juice, use a heating pad, rub your tummy to try to help move things along, hang over an exercise ball (or anything to reverse gravity), take a hot bath, stop taking anything that slows movement through your GI tract (imodium, metamucil, etc), get on all fours and move your hips from side to side, lay on your back and pull your knees up and rock from side to side. There is a chance that it could be caused by an adhesion. Did you eat anything that could be causing it? How is your hydration/dehydration level?

I hope this is just a partial food blockage and passes soon. With everything else that you've been through already you don't need to have anything else happen.
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


Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 2/2/2010 8:40 AM (GMT -7)   
Oh Pam - Its not easy for you!

I also freaked out completely when I saw mucus come out and SueBear kinly calmed me down too :)

I have discharge every day now - sometimes alot! My stoma nurse said that if there is a lot of blood - or if the discharge smells bad - then you should talk to your doc about it.

I dont know about your other symptoms though - you better get checked. You HAVE to drink - get Pedialyte or something like it - or it will get worse. Hoping that things look up for you soon :)
Diag proctitis 97
Major flare and extension to left sided colitis Aug 2006 - present

I have bled every day since Aug 2006 (I quit smoking in June 2006)



Imuran (Azathioprine) game me liver damage. LDN no luck.

Was on lots Asacol and mesalazine enemas - now seems to be making worse.

Back on Prednisone :(  Valium to control prednisone side effects.

Booked in for JPouch Jan 2010
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 2/2/2010 8:57 AM (GMT -7)   
Thanks.
It wasn't really mucus--just a lot of brown liquid.
I don't think I have a blockage as I am still getting a lot of output from the ostomy. When I was in the hospital, I was also having a lot of vomiting, and I had an upper GI scope that came back fine and there wasn't a blockage then either. My doctor doesn't really know what was causing it. I come home and I'm fine for a few days and then it starts again. This has happened a couple of times. It just gets worse until I can't even drink. Even when I am drinking, it's all coming out so fast, I still get dehydrated and my potassium levels keep being low. My heart rate was 136 when my nurse was here yesterday. I have a doctor's appointment today. I'm just afraid he's going to send me back in for fluids, and i REALLY have to go to school tomorrow :(
The cramping is not constant. It comes and goes and it is the same spot on the lower left
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months until we can try the next surgery again
Imodium (4/day), Questran (3/day), Zantac (2/day), Zofran (as needed)


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 2/2/2010 9:30 AM (GMT -7)   
If it's brown it's old blood and could be from your last surgery. As Clicky said if the discharge doesn't smell and there isn't lots of blood (esp bright red blood) it's usually ok.

Do you have pain pills that you can take that will will reduce the pain so that you can drink and not throw up? I know that after surgery # 1 I hit a point at 5 days out where I didn't feel pain but kept throwing up every 5 hours or so. The NP said - take your Tylenol and ibuprofen on a schedule even if it doesn't hurt and if you feel like you're going to throw up take an oxy and see if it goes away. It worked. I was hitting a pain threshold that I didn't feel but my body was reacting to. I wonder if your body is hitting a threshold and you are feeling it and your body is making you throw up as a result. A friend that had spinal surgery had to take anti-nausea meds as she was having a nausea reaction also - hers was more of a withdrawal symptom.

As Clicky said - you have to drink. Even if you can only take a couple of sips of liquid every 10-15 min that's better than nothing. How long after drinking do you throw up? Do you throw up with nothing in your stomach? Is it possibly a partial blockage (liquids are getting by so you still have output)? I would definitely keep an eye on your heart rate. When I was anemic my heart rate went up and the ER doc said that if it had stayed up I could begin to experience failures in other organs and damage my heart. You probably will need fluids but maybe you can get them today and get to a point where you feel well enough to go to school tomorrow.

I hope that your doc appointment today goes well and they get you fixed up and feeling better.
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


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 2/2/2010 9:46 AM (GMT -7)   
Thanks again for the detailed response! I haven't taken the Lortab for pain in the past couple of days.
I am on Zofran for the nausea and Zantac because my doctor thought it might help, too. Maybe the difference between being in the hospital and home is in the hospital I get all my meds through IV. Maybe I am not absorbing the pills correctly.
I have been trying to at least take sips all day. I don't always throw up immediately when drinking, but my stomach is very empty, so it makes it worse. You know how crappy it feels to drink something on a totally empty stomach. I know the longer you go without eating and drinking, it just makes it worse. I threw up probably 5 times overnight, 5 times yesterday, and already 4 or 5 times today.
My heart rate always goes way up when I start to get dehydrated. When I was in the hospital last time, it was down to the 60s. It hasn't been that low since I had the UC (probably because I was always a little dehydrated). That was on Wednesday. On Saturday, it was 99, and yesterday it was 136. They were worried when it was staying in the 140s one time when I was in the hospital and gave me an EKG, but nothing was abnormal besides the high rate so they said it was just dehydration and gave me more fluids. I also become anemic quickly. I had 4 or 5 blood transfusions during the surgeries and hospital stays.
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months until we can try the next surgery again
Imodium (4/day), Questran (3/day), Zantac (2/day), Zofran (as needed)


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 2/2/2010 11:18 AM (GMT -7)   
Do you have chamomile, peppermint, or ginger tea? They are usually pretty good to an empty stomach in my experience. I always have to drink bouillon after the tea to get the sodium once my tummy is ok with it. Did the nausea start when the Lortab wore off? I hear you on the dehydration/anemia/heart rate issue - I had the same problems at the beginning of the year. Are you on iron pills so that you can keep making blood once they transfuse you or are your iron stores ok? My iron stores were always low when I got anemic so I had to take iron infusions and then iron pills so that I could make blood in addition to drinking to combat the dehydration. What did they give you in the hospital that you aren't getting at home for drugs? Maybe that's what's missing. I got Toradol, Tylenol, and oxy in the hospital. Once I got home I took Tylenol and ibuprofen on a schedule and weaned off of them slowly after a few days home (ibuprofen first then fewer doses of tylenol) to see if reducing them created pain or nausea this time. Maybe you need to take the Lortab to allow you to drink and eat or at least take Tylenol or ibuprofen so that you aren't taking the narcotic but are still getting a pain reliever/anti-inflammatory for a few days. Make sure that your pills are not slow/timed release as you won't absorb them. Ask the pharmacist if you can crush or cut them to ensure better absorption. Are you taking the potassium horse pills to fix your low potassium issues? Did one maybe get stuck in a turn? I'm just brain dumping ideas...maybe one will trigger for you.
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


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 2/2/2010 11:30 AM (GMT -7)   
Interesting info on Lortab - Do not stop using this medication suddenly without first talking to your doctor. You may need to use less and less before you stop the medication completely. Is is possible that this is a withdrawal issue?

Also interesting - both Lortab and Zantac have a - call your doctor at once notice if you experience the following:
nausea, stomach pain, low fever, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes).

I'm not sure if any of these apply to you other than the obvious ones but I thought it was interesting that they both had this which to me would indicate that they could be liver affecting.
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


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 2/2/2010 12:16 PM (GMT -7)   
I'll try to drink some tea and broth tonight. I was vomiting in the hospital, too, and last time I was home, even though I was still taking the Lortab. That doesn't mean it's not due to that this time, though. I get basically the same meds in the hospital (I get Protonix instead of Zantac but my insurance won't cover that), except that everything is IV form. My doctor doesn't have me on iron, but I need to ask about it, because I think I should be (though that will make me sick, too. Ugh). I had also wondered if the sickness was due to one of the meds I was on. I'm not on potassium either. They always just give it to me in IV form, but I should ask about pills, too .
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months until we can try the next surgery again
Imodium (4/day), Questran (3/day), Zantac (2/day), Zofran (as needed)


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 2/2/2010 3:44 PM (GMT -7)   
Well, I saw my surgeon, and, yes, he assured me that the rectal output is normal. He was pleased nothing is coming out my vagina, as this hopefully means my fistula is healing.
He told me to start taking some Pepto and if I still can't keep anything down by Thursday morning to call him and he will have me come into the hospital to see the doctor who did my upper GI scope again, as he doesn't know what the problem could be. He was concerned about my heart rate so he didn't want me to go much longer than another day.
I also have to go in next week to get another suture put in on the tube under my stoma, since it has come loose on one side and can slide through
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months until we can try the next surgery again
Imodium (4/day), Questran (3/day), Zantac (2/day), Zofran (as needed)


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 2/2/2010 4:33 PM (GMT -7)   
Awesome news on the fistula healing. I'm sure it's nice to get some good news.

Pepto - is he thinking that there's an acid problem causing the nausea? Did they give you anything in the hospital to stop you from vomiting? Was he concerned about the pain as it doesn't sound like it's upper GI related? Are you taking any probiotics (wondering if your gut flora is messed up from all the surgeries and meds)?

Did he say anything about iron or potassium pills - or are you at least taking a daily vitamin (when you can keep stuff down)?
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


Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 2/2/2010 5:03 PM (GMT -7)   
I also had fast heart rate in hospital and before (up to 180 when in hospital - which caused all sorts of excitement and cardiologists, etc). They said was due to low blood volume (also needed blood transfusions) and dehydration and poss general inflammation. Because this had been an issue fo me for a long time they had to put me on beta blockers to control my rate - but even on them when my rate creeps up I know I need fluids NOW! And more importantly electrolytes.

So - not to be repetitive - but this is from my surgeon - try Pedialyte or something like it asap - it has sodium, potassium and other electrolytes - it saves children's lives who would otherwise die of dehydration. It is similar to some of the formulations in the IV bags that they give you - and it goes down just fine when you are this sick. You may not even throw it up and you can buy it at any pharmacy.

Yesterday morning I got up - heart rate elevated (even though I am on medication to slow it down!) and I was very dehydrated. I managed to get a bottle of this down me plus water and peppermint tea and my heart settled down. Could you eat banana or a bit of one? That really helps too.

RE DRUGS - I chew mine before I swallow to help digestion!

Also - when you are eating - you should consider eating only REALLY non-offensive stuff for you (for me its mashed potato, homemade chicken broth, etc) and try and get some salt in there - you need it!

Hoping and praying that things turn around for you and that it settles.

And - meant to say that my first few bouts of things coming out my rear were dark coloured stool like - now mucus and a bit of blood!

Good luck to you!
Diag proctitis 97
Major flare and extension to left sided colitis Aug 2006 - present

I have bled every day since Aug 2006 (I quit smoking in June 2006)



Imuran (Azathioprine) game me liver damage. LDN no luck.

Was on lots Asacol and mesalazine enemas - now seems to be making worse.

Back on Prednisone :(  Valium to control prednisone side effects.

Booked in for JPouch Jan 2010
 


privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 2/2/2010 8:30 PM (GMT -7)   
Pam,
I had surgery in late June and I've had the discharge of stool colored discharge last in November but have the pressure making me feel like I need to poop almost everday. Everyone here and the docs say it is normal and can last for as long as a year. I sure understand where you are coming from and what it feels like if that helps at all..

ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 2/3/2010 9:27 PM (GMT -7)   
Pam - I just wanted to check in and see how your day went today. Are you getting better and are you able to get/keep liquids down? Did you make it to school today? I hope things are on the uphill for you and you don't have to go in for fluids tomorrow.
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


Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 2/4/2010 8:42 AM (GMT -7)   
You OK Pam? Hope things are getting better. As ducrudr said - hope things are on the up hill!
Diag proctitis 97
Major flare and extension to left sided colitis Aug 2006 - present

I have bled every day since Aug 2006 (I quit smoking in June 2006)



Imuran (Azathioprine) game me liver damage. LDN no luck.

Was on lots Asacol and mesalazine enemas - now seems to be making worse.

Back on Prednisone :(  Valium to control prednisone side effects.

Booked in for JPouch Jan 2010
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 2/4/2010 1:51 PM (GMT -7)   
Sorry, I was in school all day yesterday and my internship today. I am really not feeling much better. The Pepto (he just said to try that so it would coat the stomach some so I could maybe eat something) did not work and my doctor called in a Reglan prescription today. He said if that doesn't work quickly and allow me to keep more down today, then I will have to be admitted again for IV fluids. He spoke to the other doctor at the hospital again and he said the next thing I need is some more testing on my stomach, as he thinks things may be moving too slowly from there or something. I have been able to drink some liquids, though, so at least I am not completely throwing everything up. I tried to eat some noodles after taking the Reglan and I threw them up.
I'm getting a lot of foot and leg cramps, so I'm pretty sure my potassium is low. My hands keep falling asleep and my face feels tingly at times. I'm not sure what that is all about
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months until we can try the next surgery again
Imodium (4/day), Questran (3/day), Zantac (2/day), Zofran (as needed)


Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 2/4/2010 3:05 PM (GMT -7)   
Hi Pam,

Sorry to hear you are still struggling :(

Maybe you are on too much Imodium? - it causes nausea - see side effects here www.medicinenet.com/loperamidesimethicone-oral/article.htm

Hope that something works out for you soon!
Diag proctitis 97
Major flare and extension to left sided colitis Aug 2006 - present

I have bled every day since Aug 2006 (I quit smoking in June 2006)



Imuran (Azathioprine) game me liver damage. LDN no luck.

Was on lots Asacol and mesalazine enemas - now seems to be making worse.

Back on Prednisone :(  Valium to control prednisone side effects.

Booked in for JPouch Jan 2010
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 2/4/2010 3:07 PM (GMT -7)   
well, I was having the nausea in the hospital before I started any Imodium. It could be a different reason now, but it doesn't seem like it is any of my medications
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months until we can try the next surgery again
Imodium (4/day), Questran (3/day), Zantac (2/day), Zofran (as needed)


Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 2/4/2010 3:16 PM (GMT -7)   
Too bad - its a shame its not something more straightforward!

Fingers crossed for you!
Diag proctitis 97
Major flare and extension to left sided colitis Aug 2006 - present

I have bled every day since Aug 2006 (I quit smoking in June 2006)



Imuran (Azathioprine) game me liver damage. LDN no luck.

Was on lots Asacol and mesalazine enemas - now seems to be making worse.

Back on Prednisone :(  Valium to control prednisone side effects.

Booked in for JPouch Jan 2010
 


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 2/5/2010 2:00 PM (GMT -7)   
Pam - I'm glad you made it to school as I know you were wanting to get there. The tingling and body parts falling asleep I had when my iron was low. Have they checked your iron levels yet? Are you able to keep anything down yet or are you headed for fluids? Have you tried reducing or eliminating your Imodium to see iff that will help w/ the nausea or anything else. I'm sure part of the problem is that everything that you are taking has nausea as a side effect. Is the Reglan helping? I hope things are getting better.
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


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 2/7/2010 2:39 PM (GMT -7)   
I ended up having to be hospitalized from Thursday night until this morning. They gave me fluids and potassium and did a test--a gastric emptying test. I had to eat radioactive eggs and then lay there for 1.5 hours while pictures were taken to see if my stomach empties too slowly. The test was on the slow side of normal, but they had already been giving me the Reglan, which is the drug used to treat it. The nurse practitioner says she would still bet that a slow moving stomach is what I have. Who knows. The Reglan doesn't seem to be helping, so I don't know that I believe it
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months until we can try the next surgery again
Imodium (4/day), Questran (3/day), Zantac (2/day), Zofran (as needed), Reglan (4/day), Probiotics


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 2/9/2010 9:40 AM (GMT -7)   
Pam - Total bummer. I hope you're feeling better after your refill. Did they tell you to take any supplements/vitamins when you get home to keep you going? Did they tell you to stop taking Imodium or other transit slowers or take a look at the potential side effects of your other meds? I know that my co-worker is having transit speed issues but he discovered (after a bunch of GI tests) that it's caused by one of his anxiety meds.
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


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 2/9/2010 9:52 AM (GMT -7)   
He didn't have me change my other meds. The GI doctor just added probiotics. They also didn't add any vitamins or anything. I am still throwing up several times a day with the Reglan, so I don't think they have the problem right. The reason I don't think it's any of the meds is that I was getting sick in the hospital prior to taking these same meds, and I had issues for the past 2 years with nausea/vomiting, which I was always told was due to the UC. Now my surgeon is saying it was likely never because of the UC. But nor do we know what it actually is. I do throw up things that I ate long before, so it does seem right that my stomach empties too slowly. Like yesterday at around 11 am I threw up dinner from the night before. But then I don't know why the Reglan isn't working.
I'm also getting worse cramping. When output finally comes out rectally, it alleviates the cramping, but it seems it has to build up pretty much all day before anything will come out. This is just all very frustrating. I don't know that I should have ever had surgery.
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months until we can try the next surgery again
Imodium (4/day), Questran (3/day), Zantac (2/day), Zofran (as needed), Reglan (4/day), Probiotics

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, November 23, 2017 11:48 AM (GMT -7)
There are a total of 2,897,217 posts in 317,988 threads.
View Active Threads


Who's Online
This forum has 157561 registered members. Please welcome our newest member, jubinars.
286 Guest(s), 8 Registered Member(s) are currently online.  Details
PDL17, 07kr5, Gemlin, LizzyA, adamas, Gewarn, Pumpkinpatch1, Sono


About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow HealingWell.com on Facebook Follow HealingWell.com on Twitter Follow HealingWell.com on Pinterest
©1996-2017 HealingWell.com LLC  All Rights Reserved.