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After 11 months of post op complications I've been advised by my surgeon to remove my pouch Frowner
I initially had an infected wound which took about 4 months to heal completely, then I had this internal infection which just wouldn't shift.
From what I understand of it all I had a hole in the pouch which wouldn't close and after being sent home to wait while it closed the area got infected. I was put on antibiotics (augmentin). Well the infection kept coming back every time I finished the antibiotics.

I developed a hard sore patch in my buttock which started to get bigger and bigger. But I couldn't be seen by my surgeon because he was too busy and was advised to check in via A&E.
I was admitted and had an operation to cut a hole in my buttock to drain the infection which was collecting.

Obviously it was very sore but I thought it would be a means to an end.
Then I went back to see the registrar in clinic and mentioned that another lump seemed to be forming not far from the hole which was surgically cut to drain the infection. the regestrar said she wasn't worried about. Well that lump burst open and presented itself as a fistula so I now have 2 vey sore holes which are weeping infection.

I've just been back to see the surgeon after a heated conversation with his registrar as I was getting concerned with how my treatment and how my care was being handled as I never really knew what the next step would be. I was concerned that every time i stopped taking the antibiotics this infection would come back, and I felt kind of abandoned once I was sent home. I know they are really busy and they always do their best but it's just how I felt.

So after agreeing to see me the surgeon has now recommended that I have the pouch removed and go back to a permanent ileostomy as he thinks its the pouch thats causing this ongoing infection, and as its been surrounded by this infection for so long now it would never ever function properly if at all as the infection would have damaged the tissue of the pouch.

Obviously I'm absolutely heartbroken as I never even got as far as getting the pouch connected.

I'm not sure whether I should get a second opinion or not. I believe my surgeon is one of the top surgeons in the country if not the world but I had it in my head that I was finally going to get rid of the bag.

It's been really hard physically and mentally over the past year and I lost about 4 stone (but put 1 back on) but don't know whether I should give up, or whether I have a choice, because the way my surgeon put it to me was I didn't have a choice, plus I'm absolutely petrified of the surgery and the recovery as I'm bearly over the last surgery.

Sorry for the rant but any advice would be great!
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I am so sorry to hear about everything you've been going through. It sounds like you got the short end of a worst-case scenario... I feel for you and would also be heartbroken if after going through all that my pouch was never even connected.

I'm sure your surgeon knows what he's doing, but I would definitely also get a second opinion before undergoing any additional surgery. It's just always a good idea to cover your bases before doing something that can't be reversed, especially if it's not the outcome you want.

Good luck. We're here any time you want to vent. Keep us posted.
Dodge,
You were not operated in Oxford by some chance?
PM me if you were....
In any case there is no reason to accept the decision as final unless you are in a life threatening situation...for now I would try to speak with another surgeon and ask if there is any way to keep the pouch and if not then to clean you out and in a while build a new one if feasable...do not give up the fight for your pouch unless you are certain that you are ready...even the best surgeons can have a failure or 2 but it is unfortunate that it has happened to you...
Sharon
I was operated on at St. marks in harrow.

I've already been in for a clear out and I'm due to go in and have a seton put in to help drain the infection while I await the op to remove my pouch.
I'm booked in to have it done towards the end if may as that's the next available time my surgeon can do it.

I don't really know what to do if I'm honest. I have two great kids and a fiancé and this has been such a strain on all our lives sometimes I think I should throw in the towel and try and get our lives back to normal, go back to work and put and end to all this hardship.

My original surgery to form my ileostomy back in 2006 was tough too as I had epidural complications and ended up being told I'd probably never walk again. I did recover but spent a year in a wheelchair.
That was so hard I can understand why my family didn't want me to have this op on the first place. And now I feel like I should maybe of listened to them. Mentally it's taken it's toll on me and although I wouldn't say I'm depressed I'm struggling to hold it together at times.

It's having such a strain on my relationship and I feel guilty for being ill and can't do the things I should be doing.
My fiancé can be so supportive but I get the feeling that she's had enough of it all too.
But I'm just not sure I'm ready to give up on my pouch. I don't think a redo is possible because I know there was a problem withe reach last time.

My whole family think I should have my pouch removed, well we've told it HAS to come out.
Boy, with all this disease and trauma, it is beginning to sound like your original diagnosis of Crohn's could very well have been correct. Indeterminate is not far off either, as both Crohn's and indeterminate diagnoses increase the risk for pouch failure. It must be heartbreaking to even have to consider it after all you've been through, but sometimes accepting reality is all you can do. But, you do need confirmation of what that reality is first.

That said, I think you do owe it to yourself to get a second opinion to see if there are any viable options for you. But, this ongoing infection thing sounds pretty overwhelming. I am not even sure you are a candidate for a Kock pouch with your unclear diagnosis.

Personally, if it were me, I'd probably be making plans to give up on it and focus on my family. Good luck whatever you decide.

Jan Smiler
I agree with Jan but have another question. Have they determined what kind of infection you have and are they sure they can remove it by taking out your j-pouch? You still have the fissures and infection in your bottom area. I hope they have the correct antibiotics fighting your infections.

I bring this up as I'm not sure it's good to cut you open without figuring what the bacteria is in there and fighting it with the correction antibiotics. My dad's had a lot of wound infections, including staff, and they are having a hard time finding him antibiotics he can take.

It's hard to smile with all of this weight on your mind. Plus not knowing how treatment is really going to affect you.

Please take care and time making this major life experience. Plus let us know how you are doing.
Hi

Well last Thursday I had surgery to open the fistula to the previous surgically cut hole and have had a seton put in, so I now have an almighty gash just to the left o my perineum......ouch!

The surgeon has said that he scraped out all the infection inside and given the area a good clean out.

I'm feeling a million times better now but still weeping a greenish type discharge which I can only assume is infection. Should this still be coming out of me?? Or is the pouch still producing this infection??? The surgeon did say that there should not be any infection left in there and nor should it come back???? Confused?????

He did say that I had about a 10% chance of the pouch working when I asked him again if I had any hope of getting it connected.
10% is still a chance.....right!......hmmm not really Frowner I suppose I'd better get used to the idea of the permanent ileo as the operation to remove my pouch is scheduled for 23rd May.......just not sure I'm ready to give up on my pouch yet.
I don't really see what other options I have except maybe to wait.

Any suggestions would be we'll received!!!

On a positive note though, I seem to have pulled myself out of the dark. I think I was pretty depressed and didn't want to admit it, but I'm not feeling so sorry for my self anymore!!!!
Last edited by dodge
So sorry you and your loved ones have to go tgrough this. I would look into an actual Colin and rectum treatment center. I've heard, in the US, that mayo clinic has very positive outcomes. Not sure where you are from though. I was having complications with I infections and a leak at the anastomosis. I was in so much pain and I too wanted to give up as I have two small children and a husband who need me. I'm 31 and felt I was a burden on all of them.

I'm feeling much better, after getting a second opinion and a new regimen of meds.

Look into all the options you can and be ok with your decision. I pray for the best outcome for you.

Heidi
Thanks Heidi

The only meds I've ever been on since this all started has been more or less constant Augmentin and a brief spell on metronidazole.

I'm in the UK and dont really know where else or who to turn to. My surgeon is highly regarded and im not sure where else to go.

Whenever I've stopped the antibiotics the infection just gets worst. I've been told to stop them after today (7 day course).

I just want to connect my pouch to at least give it a chance!
I understand! It is very difficult for one to go through such major surgeries just for it to not even work in the end! I was on metronidazole and cipro up until about a month ago. So about 2 1/2 months on and I did notice a big difference when I would stop. Full blow flare ups it seemed like... I really thought I was going to be going back to an ileostomy and was thinking, that would be better than what I am going through right now... the pain was so severe, I had to keep myself drugged up every 4-6 hours. BUT I am glad my Dr. didn't give up on me because i sure was ready too!

Just shy of my 4 months out, I FINALLY started to see a difference, and this was just 2 weeks ago.

Have you researched your symptoms and complications on the internet to see if there is others out there with success stories, other than here in this site? I just feel so sad for you, especially if you are not ready to give up the fight.

Keep me posted!

Heidi
Just because the surgery is scheduled doesn't mean you should stop fighting to get rid of the infection. Some people here in the USA have pouch repair surgeries. I don't know if it is possible in your case but if just a small part of it is bad, there was a leak or hole in it (?), maybe that could be removed and the pouch closed - made smaller, or something like that. It's my understanding that pouches stretch some with use.

Even if that can't be done you have right up until they start to take you to surgery to change your mind. I see nothing wrong with keeping up the infection and fistula fight as you have 2-3 months before the surgery anyway.

There is nothing wrong with using an antidepressant for 2 good reasons. First of all you are and have been chronically ill. You probably are situationally depressed which happens because of the situation you are in and you may need to take medication for only 6 months or so. The second reason is the mind gut connection. There is great research on this. I think I'll always be on some kind of antidepressant because my mind is missing the necessary chemicals to get the job done without my colon furnishing them. Hopefully I'm wrong but I'm no longer upset I might need to stay on them forever.

Hang in there!

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