Skip to main content

Thought it might be helpful to share my experience with jpouch removal as well as anus and rectum removal with new end ileostomy. The procedure itself went fine with no complications(Mayo Clinic). Post op I felt pretty good for a couple days then struggled a bit with an ileus and NG tubes twice as I started to vomit. I was amazed that there are no diet restrictions post op other than no fresh fruit/veggies. They actually want you to eat right away to help wake the bowel. The bad days in the hospital I remember feeling bloated, pain and exhausted. It's hard to sleep when you have extreme nausea/vomiting. On those days I'm not exaggerating when I say I would have welcomed death. The important thing is it got better and exactly one week after surgery I got to go home.
As nice as it was to get home, the first 2 weeks were a struggle. When I ate, things weren't moving through my system well and I'd get really bloated with lots of pain. It honestly felt like something was going to burst in my abdomen. Diet didn't seem to matter, it was a very frustrating time. At the one month mark this straightened out and continues to be working well. My advice from a diet standpoint would be to eat small frequent meals(every 2-3 hours) and to eat bulk forming food such as peanut butter toast, al dente pasta, potatoes...
My stoma has been easy to care for. Every 3 sometimes 4 days I remove, shower and replace my hollister appliance. I did have super watery output for a couple days which led to some skin breakdown but it's getting better as my stool thickens. Initially there's a lot of trial and error as my stoma shrinks and the swelling goes down you have to cut your wafers to different sizes. Eventually it should be more precise and wafers can be ordered to size eliminating the cutting part.
My abdominal incision has been pretty much worry free.
My bottom didn't hurt as much as I thought it would. It drained bloody/yellow fluid for 3 weeks then I thought it had healed. A couple days later it started draining bloody fluid again only this time it was nasty smelling. Started a couple antibiotics and within 2 days the smell was gone but it continues to drain. When this finally heals I'll be very thankful as its kinda creepy.
Keep a food journal if you're having difficulties. Track what and when you ate/drank and any meds you take. It may help you determine what food worked well or potentially caused a problem.
I had some extremely tough days while in the hospital and at home but almost 1 month to the day post op things really started to improve for me. Use your natural supports on the tough days. Whether it's family or friends don't be afraid to ask for help. I know I needed to lean on my crew a bunch!
Jed
Original Post

Replies sorted oldest to newest

Wish I did. I always sit on a pillow. Change my dressing every couple hours. Try to eat a high protein diet to promote healing. Keep it clean and my surgeon told me to use a hand held shower head to spray right up in my crack. Finished my antibiotics today and have very little discharge from the wound so I'm keeping my fingers crossed.
I was treated for UC for almost 20 years but about a year ago Mayo suggested that I most likely had Crohns all along. I just finished up a week course of Flagyl 500mg bid and Levaquin once daily. It took the smell away by day 2 and just about dried things up. I have minimal drainage presently and am keeping my fingers crossed it'll finally heal up.
Hi guys, I am almost two weeks out of my perm ileo surgery. My question to you is: did you feel sore enough to the point that you were still taking pain meds at two weeks? After my first three surgeries four years ago - colon removal, jpouch creation, takedown - I recall only needing Percocet for a few days at home. I feel like I still need it this time around. I'm still pretty sore "inside." The outside of my butt surprisingly doesn't hurt as much as I thought it would, but I feel sore inside my butt. Butt stitches come out tomorrow. Energy level much better than earlier surgeries. I'm just hoping for some feedback from those who know. Thanks, and hope you're continuing to heal and gain strength.
Lori,
So glad you're on this side of the surgery and on the road to recovery! I needed the four different prescription pain killers for 4 weeks, then it was dramatically different at that point. Before that, I needed as often as I could take them (like 4-6 hours, or nightly to be able to rest). They were so strong that I felt like I was floating off to sleep! Or so drowsy I just slept it off during the day. Either way, the pain (for me) was that intense. My bottom really ached.

My doctor said that most pouch excision patients needed the pain killers for 3-4 weeks. It does get better! Make sure you're comfortable to sleep and rest- no sense being a martyr and enduring all that pain if you have meds to help you through it.

Are your pain pills helping?
Be well!
Laura
Hi, I would have to agree with the previous post. I was on Dilaudid for the first 12 days and my surgeon added Gabapentin 5-6 days after surgery. I was able to switch to Norco and stayed on the Gabapentin and then dropped down to Tylenol all over about 2.5 weeks. I had developed an abscess by the 3 week mark so I needed to go back on Dilaudid. But I've been told the same-- 3-4 wks on painkillers is normal after j-pouch excision. I would ask your doctor about maybe adding Gabapentin. My surgeon gave me a small dose of that because he said a lot of the soreness is from nerve pain and that Gabapentin would help me wean off addictive painkillers. He was right.
Thank you for your responses. Ok, so there's something different about this procedure that makes us ache longer. Laura, I remember you writing about needing painkillers for about four weeks. Percocet works beautifully to take my pain away. I've been taking it upon awakening, around dinner time and before bed. DesisnOOps, that's an interesting suggestion. I was on gabapentin for migraines a few years back. I will mention this to my surgeon tomorrow. At least I know I'm not being a baby about the pain.
You're definitely not being a baby about the pain. My doctors at Weill Cornell and at the Cleveland Clinic both told me that j-pouch excision could be the most difficult surgery yet for me and it really has been despite me being so much healthier than prior surgeries. The pain was incredibly excruciating so cut yourself some slack. You've gone through a lot.

In addition to the Gabapentin, I would highly recommend a high-quality gel cushion to sit on at home and in the car to help alleviate pressure down there.

Feel better,
Tina
I actually found a microbead pillow at K-Mart for $12. It's cushiony but has a lot of give. I bought four of them. My back has been sore, so I can sit on one and lean against another....Tina, I have had the same experience as you. I was very healthy going into this surgery, at a good weight, etc., that's why my soreness was a little surprising. The good part is that I was completely mentally ready for this. It took the fear away and let me plunge head first into the challenge. Thanks so much for your feedback.

Well, I saw my surgeon this afternoon, mentioned that my Percocet is helping but will run out in about five days, and he said, "OK, use it sparingly." He was rushed since he was seeing a new patient but I'm disappointed in myself that I didn't stay on topic and a little put off by his dismissiveness. I'm not totally freaked out because I have an appt with my neurologist tomorrow and am going to ask for Gabapentin again. This will hopefully help my migraines and the nerve pain from surgery. If it doesn't, I will call my surgeon and ask for more Percocet. Why am I letting him make me feel like an addict or something? 

I know this is an older post but I am wondering how everyone who had their pouch removed and got the end illeo are doing now that some time has passed.
I may be going through it..... I will be in a few months and I had a horribly painful 3 surgeries to get the Pouch almost two years ago.  I am not looking forward to this and I need to hear something good. 
Have you all adjusted well to having to wearing a bag?
I had one a short short time and didn't like it at all but I am at a point where I have to get my mindset on it.
It will take me forever to get used to one.
Please give me good news.... Lol.  Bad too.  I mean that.  I am in the need to know.

I could go on and on but I will highlight one thing since it was part of tonight's dinner conversation. I was talking about what I did today and my son said, "Do you remember when you couldn't do a lot and you missed a lot? I mean, look what you did today." I replied, "I do remember and I am grateful every day since my last surgery." And it's true, I say thank you each day for having my life back. I can't get those missed days back but I say yes to as much as I can now. I'm not in pain anymore. I can't say I'm in love with my bag and I only freaked out when I experienced some leaking almost six weeks post surgery. Once I got those leaking issues under control with the help of my hospital ostomy nurse and found a nice, easy, quiet bag and some pretty bag covers, I haven't felt so free since I was diagnosed with UC in '08. Sooo, a j-pouch may look better but an ostomy feels better (and is on a person who radiates better health.) Good luck!

Mysticobra, although the circumstances involved in the need to have my j pouch removed differed from yours, the CR surgeon I saw at Mayo Clinic for a second opinion only recommended an ileostomy.  I had similar, and probably much stronger feelings, about having an ileostomy and fortunately looked further into options that avoid the need for an external bag.  These options are the k pouch and the similar BCIR (the option I selected).  There is a lot of helpful information for both of these procedures on the internet and they both have a high rate of success and patient satisfaction.

 

In my case, the surgery to remove my j pouch and create the BCIR went very well and I was on my way home (12 hour trip by plane and car) three weeks after surgery.  Recovery went smoothly and I was soon able to resume my normal activities.  I can eat almost anything I want, have no lifting restrictions, can empty my pouch at my convenience, have no pain or skin irritation, no leakage or “accidents”, and no one knows I have it unless I tell them.  The button hole size stoma is flush with my skin and located below my belt line and covered with a small absorbent pad. Unfortunately, many doctors are not knowledgeable about these procedures and there are not a whole lot of surgeons who do them.  There can be complications with k pouches and BCIR’s (just as there are with ileostomies), but I and those who have them are willing to assume the risk in exchange for the quality of life provided by them.  I wish you the best of health.

Thank you for the info.
I am writing down alot of stuff to take with me to my next appointment.
I will bring these procedures up. 
One thing is I need to be fixed rather quickly.
I have lost and cannot gain weight.  If I wait too long the toll that that is taking on me will eventually.... I think be irreversible.  I have a serious weight problem.  It has gone so long I now unconsciously do not want to eat.
I am not hungry.  I need to fix that.  I do not know if the illeo will but I can hope it brings my appetite back.  Weight too. 
But... As I said I will get her opinion on both.  Once it's out.  There of course is no going back.
Thank you.
P S
I go through these bouts every nite.  I work afternoons and get home at 11 30 pm.  I spend an hour and a half almost nightly trying to eliminate.  Little comes out most times.  But once it seems I hit a gusher... Sorry.... I am ok to go to bed.  I don't want to spend the rest of my time doing this.  It's painful and take up alot of time.  Time that I cannot even sit and relax after work before I go to bed.  I worry that if I don't get that one out I will have urges all night that will keep m up. 
And the cycle starts all over the next day.  I am tired.
Last edited by Mysticobra

You are all brave.  We have to do what we have to and a good attitude helps alot.  After discussing it with my mental health professionals I have decided to leave my j-pouch in place and am getting a permanent ostomy at Mayo's 8/31. My surgeon is more optomisitic that I am.  She said this was the right decision.  I'd heard that removal surgeries were as pad as our colonectomies.  I ended up with a nice case of PTSD after my surgeries.  I'm hoping all goes well and I adjust to the bag in the 2 nights planned to be in the hospital.  I'm going to stay in Rochester, MN for an extra night as I had so many problems with my temp ileostomy I'm afraid of that happening again.  16 days in the hospital as I had dehydration problems.  The medical professionals that help us recover are wonderful.  No way could I do their job.

 

I didn't have my j-pouch surgeries at Mayo and ended up there because my cuffitis wouldn't go away.  One of my doctors there told me to order a lot of different things and to only eat a bite or two of them.  She even checked my hospital tray after I ate and nodded her approval.  I too am leary of eating everything right away.  I've been on a soft food diet for 8 months and nothing else appeals to me. I hope that will change after my diverting to perm ostomy surgery on the 31st.

 

Thanks for this post ISUJed!  From yours and others here I feel more prepapred for my upcoming surgery.  I am glad I'm not haveing it removed at this time.  I don't need any more hell days.

Last edited by TE Marie

Thanks Frosty,

I wish you well with your surgery.  I don't understand why some doctors ignore the feelings of their patients. I don't know what is wrong with your j-pouch.  Maybe there is something horribly wrong and it is a medical necessity for what your surgeon is doing.  I'm fortunate that my surgeon is considering more than my j-pouch.  They need to look at the entire person, mentally and physically.  It's your body so hopefully you can get your surgeon to listen to you.  So what if you have 2 surgeries instead of 1 - or something  like that. You are the one that is going to recover from the surgeries and you know yourself better than the surgeon does. 

 

 

desisnoo, I would love to meet you!  Please PM me if you are still there.  I will t ry to remember to PM you as well. I've never met anyone with a j-pouch......because people usually don't tell others that they have a j-pouch or stoma. I've met people havng stomas but none due to UC.  I hope all goes well for you!

P.S. Desisn00,ps

My surgeon is Dr. Kellie Mathis. By any chance is she also your's?  My dad's been on wound vacs before so I know a bit about them. I hope you don't need it too long. 

 

I'm not going to go home, 3.5 hrs away, the day I'm released. If there's a problem I want to be there. We are going to stay an extra night in the motel.  I had complications with my temp ileo  She said the stay at the hospital would probably be 2 nights and I hope she's right.

You were really sick before your conversion AllyKat.  It doesn't surprise me that you were in the hospital longer.  After all it took them weeks to figure out what to do!

 

I was in the hospital 16 days, after my first surgery and temp ileo, because I kept getting dehydrated.  I really hope that doesn't happen this time.  That's why I'm planning on staying in town for an extra night after I'm released.

I appreciate having this thread to read. Big plus for this support group it the ability to do so. 

My ileostomy is ok but my surgeon was right. I should have had my j-pouch removed along with my ileostomy back in 8/31/15.

I'm scheduled for removal of my j-pouch and anus on 3/24. They scheduled me for the first day she has open as she doesn't do other surgeries the day she does these. At least I am use to the ileostomy and she's already been in there and lysed my adhesions. My ileo surgery took 4.5 hours vs the 1.5 expected as she spent 3 hours on my adhesions. 

Thanks all

For all who are on the ileo side.  Including me.  Welcome. 

Life is good again.  Pain and worry free. 

And I had both... Now.  I have neither 

I still don't like change day.  But that time will come where it's nothing but a chore.  Today was change day.  

Sunday and Thursday... Providing no problems arise. 

Half hour of time... Including a good shower. 

Richard. 

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×