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Bleeding with j-pouch

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Ulcerative Colitis
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Posted 12/17/2019 9:40 AM (GMT -5)

Andrina said...
Yes thankfully the arthritis is controlled at the moment with 100 mg of azathioprine since the end of October. I haven't been on it for full 2 months yet so hopefully there is still room for improvement and it will help my j-pouch too.

Why do we get pouchitis? Shouldn't the small intestine not be affected by inflammation or do we have crohn's? And how would a bag make everything better? Because it's no longer attached to the cuff that could still spread inflammation?

They don’t know why we get pouchitis but our pouches start functioning as colons so who knows.

My pouch works great if I treat it with medication but if I do not treat it then I’m miserable. My UC was very difficult to treat but my pouchitis has so far been very responsive to medication.

It’s your first case of pouchitis, I wouldn’t get too upset by it. For most people it goes away with antibiotics.
Posted 12/17/2019 11:07 AM (GMT -5)

poopydoop said...
Hi Andrina I don't think you're a bad person at all! What I do think might be happening is some cultural differences between you and the Americans. I am european and lived in a few different countries...i found that the further east I go the more direct/blunt people can be. It can come across as rude to the uninitiated but it's not intended that way. Perhaps that is contributing to misunderstandings.
Just a thought.
I hope you get some good treatment for the pouchitis.


Thank you. Yes I'm European but my surgeon isn't American. He's Korean. I don't have much experience with people from Korea but I still look up to him and he's my hero. I'm crushed he doesn't want to treat me anymore but my GI said basically he has done what he needed to do. I hope I never need a bag again. J-pouch is better than a bag for sure.

I had a nervous breakdown yesterday. I never have any peace. I'm just always sick. I can't be around people because I can't pull myself together and not be bitter. I've been sick for 17 years and as far as I'm concerned, there is no end in sight.

ks1905 said...
My pouch works great if I treat it with medication but if I do not treat it then I’m miserable. My UC was very difficult to treat but my pouchitis has so far been very responsive to medication.

It’s your first case of pouchitis, I wouldn’t get too upset by it. For most people it goes away with antibiotics.

That's actually reassuring because I had a difficult case of UC too.
Posted 12/17/2019 11:16 AM (GMT -5)
Keith is right, MANY, many people get pouchitis. It doesn't mean you're going to have it chronically. If it is chronic, you will cross that bridge when you come to it. At the moment, I am just thankful you got seen, and that you've got some medication to treat it. Now we know why you're having such a hard time with your pouch.

You also have to stop beating yourself up. You're a lovely and kind person. I've never thought you were rude at all. I think a lot of people live on the surface and don't like when people say things that are not what they want to hear, and you're honest. It's not "rude" - people have different personality types. I do it too... People tend to dislike me because I will say things they don't want to hear. Not my fault the truth isn't as cute as whatever these people's friends and family have been pumping into their heads.
Posted 12/17/2019 11:39 AM (GMT -5)
You should start feeling better in 2-3 days once the cipro kicks in. Sometimes you need to use a different antibiotic or a combination of two antibiotics to treat pouchitis. You’ll find what works best for you. Don’t be scared to ask for a different antibiotic if this one doesn’t work for you.

Once this is treated you won’t have to get up so many times at night and with better sleep you will start to feel better mentally. I recently had a sleep study done and have apnea, now that I have a CPAP machine I am sleeping better and feel better overall.
Posted 12/18/2019 3:27 PM (GMT -5)
Adriana,

Are you starting to feel better?
Posted 12/18/2019 6:51 PM (GMT -5)
Actually yes. I went to have a bm only once today. How many bm's are normal with a healthy J-pouch?
Posted 12/18/2019 7:33 PM (GMT -5)
Depends what and how much you eat. Also, your pouch is new so as it develops it will expand and slow down some of the output.

When I was on antibiotics I would go 1-4 times a day. 70% of stool is live bacteria and if you kill the bacteria with antibiotics then there not nearly as much mass of stool.
Posted 12/19/2019 10:09 AM (GMT -5)
The range of normal is very large, I would imagine it's between something like 4 and 10 a day, with 4-6 being common. The trips should be quick, nonurgent and easy to pass.
Posted 12/20/2019 9:51 AM (GMT -5)
I'm glad you're feeling better! I think I was on Cipro a few times when I had campylobacter.
Posted 12/20/2019 2:32 PM (GMT -5)
That would explain why I don't have as much stool anymore as before. I was wondering where all my food went because I often feel I produce little stool for much food. It's weird.

Sara14 said...
I'm glad you're feeling better! I think I was on Cipro a few times when I had campylobacter.

did it make you feel any better?
Posted 12/20/2019 2:56 PM (GMT -5)
Yeah, but I had an odd case of food poisoning that would go away and then come back when off the antibiotics. Eventually, I think azithromycin was what finally got rid of it after 3 months, lol.
Posted 12/25/2019 7:38 PM (GMT -5)
So tomorrow I'll have a dilation under anesthesia. They said it will help with the pouchitis.
Posted 12/25/2019 7:57 PM (GMT -5)
Are you still feeling well? I am sorry about tomorrow, but thank goodness you will be under anesthesia. Who is doing the procedure, your GI? I hope it is quick and easy, and that it helps for the long-term. I had a mucosectomy with my surgery. I wonder if that helps prevent pouchitis.
Posted 12/26/2019 12:06 AM (GMT -5)
Yes I'm still on cipro and doing well with that. But now that I know I have a stricture, I seem to strain more. My stool is also formed now. I never thought it was possible.

My surgeon didn't do the mucosectomy because he said it was an outdated procedure.

I'm still flaring. I know this because I have mouth ulcers and arthritis. I also have a temperature. It has gotten better since I'm back on azathioprine.
Posted 12/26/2019 4:40 PM (GMT -5)
So I had my dilation today. I'm still feeling the anesthesia. Nobody told me they would numb my anus. I couldn't control the stool and I was on the toilet wiping, wiping, wiping. It didn't stop. Then they told me it was because it was numb and dilated. I asked for diapers. They said I will have control again in 6-8 hours. He wants me to dilate at home with a 18 mm dinner candle. He dilated it to 20 mm. Oh and it's bleeding. Is this normal?
Posted 12/26/2019 7:17 PM (GMT -5)
Also when can I start to self dilate? Right now I'm bleeding and the stool is burning my skin. I still have no control of my sphincter.
Posted 12/27/2019 10:06 AM (GMT -5)
A dinner candle??? Wow, this just sounds horrible. I am sorry.
Posted 12/27/2019 11:05 AM (GMT -5)

Sara14 said...
A dinner candle??? Wow, this just sounds horrible. I am sorry.


He explained to me that the candle wax is much softer than the Hegar dilation device which is a metal and therefore the risk of injury is lower. I will put it in a glove or something in case it breaks and he said to only insert if 4 inches or so. He also explained that when you travel you can just go to a store and get a candle which is much easier to obtain than the dilater. It makes sense to me. I just want to know when I can start and if there is someone who has experience with this. I don't look forward to it but if it makes my pouchitis better I will do it.
Posted 12/27/2019 11:15 AM (GMT -5)
I guess I just hoped if I ever had surgery that would be the end of me having to stick crap up my ass (enemas, doctors' scopes). Good luck! How often do you have to do this? For life? I hope it helps!
Posted 12/27/2019 11:26 AM (GMT -5)
As you know it's not the end for me. I'm still flaring in my mouth, vagina, joints and J-pouch. I'm basically still in the same place if not worse than before surgery. Nobody told me about dilation that I had a numb anus and stool would just flow out of me. When you get the jpouch they also scope you before they reconnect it which I had no idea about. I was made believe if you have ulcerative colitis and get your colon out you're cured. This is not true for everyone and I'm one of them. I'm back on azathioprine and cipro at the moment. I'm not enjoying life. Right now was doing well with cipro but after the dilation hell broke lose.
Posted 12/27/2019 11:35 AM (GMT -5)
Ugh, I hate to hear that. I hope it's just temporary and you get back to feeling well. That all really sucks.
Posted 12/27/2019 11:46 AM (GMT -5)
To be perfectly honest my flare, my auto immune disease, never went away without intervention. I have always needed to be on medication. I'm surprised at people who are in remission without medication. I will never be able to be without meds even after a colectomy. This is just my reality.
Posted 12/27/2019 12:49 PM (GMT -5)
Yeah, I never understood people who didn't need meds either. It's good to accept it, I guess, and just manage it as best you can. Hard to do though.
Posted 12/27/2019 1:22 PM (GMT -5)
Yes I'm already back to work today but I'm sitting here in diapers...
Posted 12/27/2019 2:40 PM (GMT -5)
That really sucks. Glad you're able to work though, I guess. Hopefully this will be temporary and help in the long-term.
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