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Ulcerative Colitis
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Posted 2/15/2016 7:21 PM (GMT -5)

ByeByeUC said...
blksteeda,
I had my fair share of complications too from this procedure and I always say I would do it again in a heartbeat because the end result is worth all the discomfort I endured during the process.

I'm going to try your Pepto tablet trick!

I had read it over on jpouch.org about the pepto. One serving is two tablets for adults. I figured it wouldn't hurt to give it a shot
Posted 2/15/2016 10:10 PM (GMT -5)
That's great!!! I am so happy you're doing well. I am very happy I did this too. I realize it's not something you want to jump up to do, especially if there is hope of controlling the UC, but since that wasn't in the cards for us, this is definitely the next best thing. 6x is incredible. At the beginning I was emptying ALL the time. I wouldn't even try to pass gas without going to the toilet. I was just not familiar with what was going on and I had no confidence. I am thankful things have improved. I am thankful your story is coming to a happy ending :)
Posted 2/16/2016 7:32 AM (GMT -5)
Glad you're doing well blksteeda! For what it's worth, "junk" food has always agreed with my pouch best -- it's stuff like granola, salads, fresh veggies etc that I really had to work at incorporating into my diet (all are fine now though).
Posted 2/16/2016 2:10 PM (GMT -5)
I'm loving your updates and play by play. So many good tips for everyone thinking of surgery.. I'm really really happy for you. If I have surgery I'll be reviewing your posts over and over.

Congrats!!!
Posted 2/16/2016 3:23 PM (GMT -5)

Kulinarykidz said...
I'm loving your updates and play by play. So many good tips for everyone thinking of surgery.. I'm really really happy for you. If I have surgery I'll be reviewing your posts over and over.

Congrats!!!

Don't hesitate to ask any questions you may have
Posted 2/16/2016 3:43 PM (GMT -5)
I understand; I am at the 15 year mark as well. Last scope detected polyps. I have been on prednisone most of the time for the last 8 years and have gained 50 lbs. I now have high blood sugar and diabetes. This means the end of prednisone for me as it has poisoned my body. My current flare is getting worse and I have to get rid of prednisone - currently at 15mg tapering 5 mg every 2 weeks.

Does anyone out there have any last suggestions?

I have tried everything as far as pharmacy... Prednisone,Asacol, Lialda, Uceris, 6MP, Humera, Remicade, Simponi, Entivio, etc
Posted 2/16/2016 3:51 PM (GMT -5)
"Does anyone out there have any last suggestions? "



shoot the misguided individual that prescribed pred for 8 years !
Posted 2/16/2016 3:52 PM (GMT -5)

Help8675 said...
I understand; I am at the 15 year mark as well. Last scope detected polyps. I have been on prednisone most of the time for the last 8 years and have gained 50 lbs. I now have high blood sugar and diabetes. This means the end of prednisone for me as it has poisoned my body. My current flare is getting worse and I have to get rid of prednisone - currently at 15mg tapering 5 mg every 2 weeks.

Does anyone out there have any last suggestions?

I have tried everything as far as pharmacy... Prednisone,Asacol, Lialda, Uceris, 6MP, Humera, Remicade, Simponi, Entivio, etc

sorry you're having a rough time. Sounds like you've tried them all and from personal experience, I don't have much faith in homeopathic treatments. Perhaps start a new thread for yourself. You'll get more responses it think. Best of luck.
Posted 2/17/2016 7:03 PM (GMT -5)
Well I'm hoping this is just part of the adjustment period. Monday night around 9 the flood gates opened up. I probably went to the bathroom another 10x through the night and it was nothing but watery. By the early morning hours what was coming out of me was clear like I had taken a colon prep. The same symptoms continued Tuesday and through Tuesday night. Some abdominal cramping and nausea went along with all the trips to the bathroom. I was losing easily 8-16oz of liquid every bathroom trip. Today I went to the hospital to get fluids before anything got too serious. I got two bags of fluid and my surgeon gave me a script for Lomotil. I see him on Friday morning for my drain and I'll see at that time if I'm any better, if not I'm sure I'll be in the hospital for a couple days.
Posted 2/17/2016 7:21 PM (GMT -5)
Ugh! Sounds like a crummy way to spend you day. Hope the lomitil slows things down for you and you can avoid a hospital stay.
Posted 2/17/2016 7:44 PM (GMT -5)

blksteeda said...
Well I'm hoping this is just part of the adjustment period. Monday night around 9 the flood gates opened up. I probably went to the bathroom another 10x through the night and it was nothing but watery. By the early morning hours what was coming out of me was clear like I had taken a colon prep. The same symptoms continued Tuesday and through Tuesday night. Some abdominal cramping and nausea went along with all the trips to the bathroom. I was losing easily 8-16oz of liquid every bathroom trip. Today I went to the hospital to get fluids before anything got too serious. I got two bags of fluid and my surgeon gave me a script for Lomotil. I see him on Friday morning for my drain and I'll see at that time if I'm any better, if not I'm sure I'll be in the hospital for a couple days.

There is a nasty stomach bug going around where I live. It went through my family....I had it last week. Unfortunately for us colonless people, things like that are bad and it wipes us out. Hopefully it settles for you and it's just a bug.
Posted 2/17/2016 8:49 PM (GMT -5)
That stinks. I have to say, early on, I had some of those nights where I was going a LOT. I didn't count, still don't... My surgeon asked me how many times I go a day and I seriously have no idea. I bet I've gone 4 or 5x today. Early on, I had a few times I had that water output where it was like I had drank a colon prep. I notice things get more formed as time goes on (TMI, sorry). I have also had what you describe with a bug. I would imagine it could potentially be both. You're not even home a week, you're in the earliest phases of healing. You can expect your butt to be on major fire, and output to be loose and frequent. I never had cramping or any amount of output that would necessitate a trip to the hospital :( Sounds more serious than normal healing. I never measured either, lol, I have no idea what 8oz looks like. When I was in with my ileo, I remember having to drain into a measuring thing but I never looked at the #s. I hope you can get through this without having to stay over night.
Posted 2/18/2016 12:36 PM (GMT -5)
Hope this setback is short and the lomotil helps. Let us know regarding yout appt.
q
Posted 2/18/2016 2:27 PM (GMT -5)
The colon prep description makes me think that it is a bug issue too.

I hope that you feel better soon, stay hydrated. I know that you just got out of the hospital but maybe it's the best place for you to be since you are recovering from surgery and have a bug.

Don't you have that Hospitalization Supplemental Insurance policy?
Posted 2/18/2016 2:39 PM (GMT -5)

ks1905 said...
The colon prep description makes me think that it is a bug issue too.

I hope that you feel better soon, stay hydrated. I know that you just got out of the hospital but maybe it's the best place for you to be since you are recovering from surgery and have a bug.

Don't you have that Hospitalization Supplemental Insurance policy?

I'm much better today, I know the initial test for C-Diff at the hospital was negative. It would take longer to get test results for the rest of what they were looking for. I do have the Supplemental Insurance and thank god for that, it payed me 5k so far. My surgeon called to check on me and will be set to see him tomorrow at 11.
Posted 2/18/2016 3:10 PM (GMT -5)
Bet ya it was a bug. Glad you're better today.
Posted 2/19/2016 2:02 PM (GMT -5)
Saw my surgeon today, he's very happy with the progress and everything we discussed is within the normal aspects of recovery. He said I was probably hit with a bug on Monday and Tuesday and thanked me for going to the ER for fluids. Below is an image of my takedown site with the drain now removed.

VIEW IMAGE
Posted 2/19/2016 2:18 PM (GMT -5)
That is wonderful news! You are a trooper and doing great inpite of it all!

Many great days ahead as I bet the worst is behind you!
Virtual hugs!!
Posted 2/19/2016 3:06 PM (GMT -5)
Hope everything is smooth sailing from here!! I had a stomach bug that I caught from my son a few weeks ago and it was a real doozy--one of the worst so there is something going around. Glad you are on the mend!
B
Posted 2/20/2016 11:15 AM (GMT -5)
Good to hear you're imoroved since midweek and that the surgeon is pleased with how things are going. How long will it take for the ostomy site to heal? And to you do anything special for its healing process?

q
Posted 2/20/2016 12:36 PM (GMT -5)
How are you today G? My site looked a lot like yours right after they removed the packing. After that, it shrunk and dried and eventually it ended up a straight line.
Posted 2/20/2016 6:26 PM (GMT -5)

quincy said...
Good to hear you're imoroved since midweek and that the surgeon is pleased with how things are going. How long will it take for the ostomy site to heal? And to you do anything special for its healing process?

q

I'd probably give it a couple weeks and it should be almost done I'd say. All I do is wash it in the shower, let the water and soap run in and out of the hole then just cover it with a gauze bandage and tape :)
Posted 2/20/2016 6:34 PM (GMT -5)
I just looked at the pic. Looks like it's healing nicely. My stoma site was loosely sutured closed so it healed really fast. I have a nice thin line scar there now. It's interesting how different surgeons have different ways of dealing with the old ostomy site. Some leave it open and some close it.
Posted 2/20/2016 7:55 PM (GMT -5)
I'd say my bowel movements have started to become more soft/formed in the last couple days. There are sometimes I empty my pouch and I'm surprised at how much I pass lol. My rectum has been pretty sore the last couple days as well. I occasionally have a slight leak or two but nothing bad at all.
Posted 2/21/2016 2:25 PM (GMT -5)
Good news all around. Can you do sitz baths for the butt burn or use a barrier type cream?
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