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Hi, I was admitted to hospital as an emergency with sepsis and developed septic shock due to a fistula in J pouch created they think by bad pouchitis.  Had 4 weeks IV antibiotics.  They want to remove pouch and give me permanent ileostomy this week.  What is it like having pouch removed? What is recovery like?  How did you cope with permanent stoma?  Has anyone had pouch redo?  I've asked to discuss this tomorrow with consultant - no idea if this is possible but would be keen to hear of anyones experience.  They are also looking to take remaining ovary with 5cm endometrial cysts at same time which would put me into surgical menopause.  I dont want this but they are keen to do minimal surgery as so tricky / lots adhesions from previous surgeries.  Feeling very scared and freaked out - would be grateful to hear from anyone.

Last edited by EP
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Hi EP,

I am so very sorry...this must be so hard for you. 

I would make a list of questions and ask your consultant all of them and then note down the responses...this is not a little surgery and you need time to comprehend the change that this is going to cause you.

Have you heard about the k pouch? What hospital are you in? (I am supposing that you are in England)...they are doing them there and can occasionally be done using the same pouch without having to build a new could be an opiton for you. You would still have an abdominal stoma but you wouldn't have an outside bag.

It must be done by an experienced surgeon to be tried by someone who doesn't know what they are doing.

If they only have to remove 1 ovary, why would that put you into menopause? If the other one is still intact and functional then you should still have your period...have you had a consult with a gyn? It would be important to talk to one before the surgery...

Stand your ground and ask a lot of questions, make sure, if they must give you an outside bag to discuss the position of the stoma and what is best for You...and talk to your surgeon about a pouch is possible in some cases but not all...and make sure that he understands all of your worries and concerns.

Good luck, my prayers are with you




Anytime surgery is thrown at you as an "emergency" situation, it's scary. I will tell you that I had my j-pouch removed in early January. My recovery was similar to the colon removal-j-pouch creation surgery...sore, tired, slow, achy. My anus was sewn closed and was achy for several weeks. Percocet took care of that and I luckily felt better when they ran out. My energy level went up at around week four post-op. After a settling in period with some leakage as my stoma shrank and my belly swelling went down, I forget about my bag most of the time now. I can't say that I ever felt that way about my j-pouch. I know you're anticipating ovary removal, too. I can only imagine how much more overwhelming that must be. I will share with you a mental trick I used before my surgery: try to keep in mind how healing this surgery can be as opposed to how intrusive it will be. Things that inflame your body will be removed, allowing you to settle and heal. This really helped me (not that I didn't freak out when I had my first major leak!) Please feel free to PM me with any questions. I will check my PMs all this week should your surgery be this week. 

Sharon, I hope my post didn't appear to not consider yours, like my experience trumps all. You are absolutely right - ask as many questions and be your own advocate. This is the time to do it. I just wanted to say that, should surgery happen, there's good quality of life after it. P.S. - your posts have helped me so much! 

I'm sorry you're going through this. I'd suggest adding a couple more questions to the list: 1) has the surgeon done a pouch removal before, and (if so) how many? Pouch removal isn't simple surgery. 2) What are they suggesting for the anus? Do they plan to sew the exit closed ("barbie-butt")? 3) Will they start hormone replacement therapy to address the surgical manopause?


I hope you have enough breathing room/time to thoughfully consider your choices.

Last edited by Scott F

My situation was different than yours, but an ileostomy was recommended by my surgeon at Mayo Clinic.  High grade dysplasia made j pouch removal necessary.  I was strongly against having the bag for quality of life issues, but understand that many folks are satisfied with that option.  I opted for a BCIR (similar to a k pouch) and had my surgery done by Dr. Ernest Rehnke in Florida.  The removal of my j pouch at the same time my BCIR was created was similar to my original surgery in terms of post-op pain and recovery and my bottom healed quickly.   I was completely off of pain medication when I left the hospital and back to normal activities within 3 months.


You should ask if your current infection condition presents any risk to having surgery at this time.  If time permits, I recommend that you explore options available so that you are comfortable with the decision you make.  I am not familiar with surgeons in the UK, but remember that a CR surgeon from the UK spent several months last year with my surgeon, Dr. Rehnke, observing the BCIR surgery and the program in Florida with thoughts of establishing a similar program in the UK.  I have not heard if anything resulted, but I could inquire about his contact information if you are interested.  In the event you have an ileostomy, you could still have a k pouch or BCIR at a later date.  I hope things turn out well for you!


Originally Posted by skn69:


Don't worry...I am not that way...any and all experience is good for anyone in need or in trouble...I figure the more the merry when it come to helping people.

But yes, we all have different experiences and points of view so we can each give a different perspecitve.

How are you doing?


I am doing great! ~Lambiepie

Last edited by Lambiepie

EP, I agree with Sharon.  I would have a GYN consult before I let anyone remove my overy.  Im assuming it's your only one?  I lost one of my ovaries because I had a 6 cm cyst over a tumor that was engulfing the overy.  I still have my other one.  But doing all this surgery at once sounds like a lot to do and a lot of possible complications.  Have them peel back the cyst.  It should not take very long, maybe an extra hour or so.  And I'd have my GYN do it, not a colon/rectal surgeon do it.  I'm very picky about my body parts and don't like having doctors just take them just because its convient for them.  Ask questions and keep pushimg until you get ones you clearly understand.  Good luck and feel better.



Dear all, thank you so much for taking the time to share your thoughts and experience. Been a roller coaster few days!!
My gastro consultant and gi surgeon have been amazing and discussed my situation with Gynae surgeon who would do any surgery. Their preferred and safest option is pouch out but they have agreed for me to have less major surgery with end ileo with a small risk of sepsis re-occurring from pouch fistula. Although small there could be hope of a redo pouch in the future - right now hanging on to that hope is important for me. They have also agreed to monitor my remaining ovary / cyst and hold off surgery at the moment as no longer doing big gi surgery.
Would seem that being brave enough to express my feelings made them stop and rethink and offer other options even though not their preferred choice. The team really listened and offered treatment which met physical and psychological needs. Very grateful for this.
Surgery much smaller so recovery anticipated quicker and hopefully only a week post op in hospital. Thanks again for support - much appreciated.

Stop the fear! I had my pouch removed in January. I am a new person! You will be so grateful that you chose to do this. It will be tough at first but so worth it. I was back at work 6 weeks after surgery and had a total abdominal hysterectomy with the pouch excision (uterus, tubes and ovaries all adhered to pouch). You will wonder why you didn't do this before. And don't fear the ileostomy - small learning curve and you will be a pro. It is so much better than a toilet!!!!! Hang in there!!

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