Fistula, incontinence, pouchitis, cuffitis - any hope?

Hey clicky, sorry to hear about your problem. I'm new to this j pouch stuff but if I were you I would find someone you trust to watch your baby for a while if possible and go to the hospital. When I had my takedown I had a blockage shortly after and was vomiting stool. I went to the ER and my surgeon was going to give me a temporary end ileostomy and reconnect it later. I know that's different, but like you I was thinking that it was the end for the j pouch. You just need to go to the hospital and see what they can do before it gets worse.

As for your baby I don't know what to tell you, I just hope you have someone to help you take care of things while your getting fixed up. Even if you have to switch your baby to formula you shouldn't ignore your health. I ignored my health for a while for financial reasons to take care of my son just to find out later I had stage 3 colon cancer. Take care of yourself now so you can be there for your baby in the future. Good luck hope things go easy.

Clicky, I am SO sorry to hear that you are going through this. I just feel for you so much going through this with an infant. I have 2 small children so I understand completely how hard it is to be going through all of this with kids. As if we don't have enough on our plates.

I had severe refractory cuffitis which was so bad, I did end up developing a RV fistula. I recently when through a pouch advancement with mucosectomy but was first given a loop ileostomy to divert for 3 months to give the area a rest before my surgeon did the advancement. As much as I loathe the ileostomy, it did give me tremendous relief and since I was diverted, the fistula was no longer an issue.

For just the diverting ileostomy, I was in the hospital for 2 days. Would there be any way to pump & dump for the first 24 hours after anesthesia? I would assume there would be some breastfeeding safe pain relievers and your pain should be pretty manageable regardless. Then perhaps be able to have someone bring your baby to you for feedings around the clock? I know this would probably be a huge pain but it sounds like you really need some relief. I hate to think of you missing out on such a precious time with your baby because of the amount of discomfort you are in.

Hang in there. Sorry

Thank you both for your replies!

I think pumping and dumping is the way to go.

It's interesting you say that severe cuffitis caused your fistula. Cuffitis has been an issue from the start and I wonder if that has been the cause too.

How has your advancement surgery gone? Are you reconnected yet?

I am relieved to hear its only two days in hospital for an ileo.

I was hoping to get an end ileostomy and either keep it permanently or go for a repair in a year or two.

Can they do an end ileostomy and leave the jpouch there?

Again, I am very grateful for your responses.

Hi Chicky,
First off so terribly sorry that you are suffering like this at a time when you should be busy enjoying your baby and having loads of fun with it...not dealing with leakage and fistulas...
Yes, the temp ileo is a good idea especially at the moment when your energy is down, your morale too and you are leaking constantly...it would take only a couple of days in hospital, you could eventually have your baby rooming in with you after the first night (they allow that sometimes now) and keep up your contact and breast feed while recovering without any guilt or seperation anxiety...
I would say that unless your pouch is very ill that they could allow it to rest for a while, let your fistula close and reconnect you at a future date when you are both prepared for it...
Hang in there..no one should have to go through this at this time of their life.
Sharon

So sorry to hear all this :-( My heart really goes out to you, and I hope you can keep your hospital stay to a minimum to keep up with your nursing. Best of luck to you!

Thank you Sharon and clz. Having moments of feeling sorry for myself about all this but really, my main gripe is that I want to just enjoy this little miracle without all the distraction, pain, etc.

It's very nice having your support though, I really appreciate it.

It seems as if it would need to be a loop -which is a worry given my loop was a bit tricky. I was hoping he could do an end ileostomy and then reconnect later if that's even feasable.

Time to bite the bullet and get it sorted.

Hi Clicky,
You have a right to feel sorry for yourself right now, so don't feel guilty on top of it. I had an RV fistula that I had repaired last year, and opted for an ileostomy until everything healed. I did not have an infant, but two young children, so know how hard it is to leave them. I was so glad I had the temp ileo. I felt so much better, gained weight (which I still haven't lost), ate what I wanted, etc. I was happier, healthier, and a better Mom because of it. It's worth the hospital stay, even if the pumping/dumping, etc. is difficult. You will be glad you did it when it's over. Best of luck!!

Colleen

Yes, my surgeon and GI both believe that the cuffitis was the cause - it was reeeeeally bad. To tell you the truth, I should never have been reversed to begin with and had the mucosectomy right away.
The pouch advancement surgery was actually the easiest surgery I have had yet. I was prepared for the worst, actually terrified of it, but really, it was a piece of cake. My surgeon was able to do it all transanally though which is why I had such an easy time with it. He had initially given me a 50% chance of it going that way and I am so relieved it has. I'll be reconnected on 6/6.

I hope that things are going a little better for you. Please keep us posted on your next steps.
Good luck to you!

First of all Clicky my thoughts are with you. I was not able to have children because of all my scar tissue from surgeries so please, be so thankful for that child, you are very fortunate in that regard. I have been lucky that my vaginal fistula hasn't had any issues yet.
Everyone on this board is so wonderful with sharing and I feel so blessed to have found you all. I just wish there was something more I could do to help everyone else.