Skip to main content

Hello Everyone. I am a 60 year-old male and after approximately 3 years of severe chronic ulcerative colitis and failing on 6 or 7 different drugs, my entire colon was removed. I am now three months post-surgery with my ileostomy which is apparently Stage 1 of a three stage procedure called a Total Proctocolectomy with J-Pouch Reconstruction. Stage 2 has been delayed because of COVID. I am concerned about the future 2 stages, and I was hoping to get some advice from people who have been through the 3 stages of the procedure and can tell me what I might expect and maybe answer some questions such as:

How old were you and how was your overall health when you had the surgery? How long and how bad was the recovery period between the Stage 2 J-Pouch construction surgery and the Stage 3 attachment surgery? How long have you been living with the J-Pouch Reconstruction? How many bowel movements a day do you have and has it decreased over time? Can you control them (ie. get the sensation with enough time to find a toilet)? Or do you have to wear adult diapers? Has that improved over time? Have you had any/many complications? If so, what were they? Do you feel like your quality of life has improved measurably beyond life with an ileostomy? Would you do it again? I really appreciate any responses.

This is my second attempt to post this. I thought I posted it earlier, but now I can't find the post and I never received any notifications, so maybe I didn't do it correctly, but if anyone has seen this previously, please let me know how to find it again. Thanks all.

Original Post

5 years since my takedown surgery (attachment) and life’s wonderful.

No urgency whatsoever, 3 to 4, something 5 bowel movement (BM) per day. not every day, it varies but never less than 2 and more often than not,  very rarely more than 4.

Never any nighttime BMs either; no need to wear a diaper and no leakage or accidents.

Hours and hours between BMs, on average 3 to 4 hours, sometimes 6 or maybe 8.

I’ve never experienced the dreaded butt burn either.

The sensation to empty is just like it was prior to the removal of my bowel, you just kinda know.

I was in my late 30’s when I had my Bowel removed. I was initially told reconnection would occur some months later and the ileostomy  was temporary; although, it was then decided I had Crohns rather than the Ulcerative Colitis, thus not suitable for a J pouch.

However, after 9 years with a Colostomy bag and not prescribed any medication to treat or prevent a flare up; my Consultant and his Pathologist decided I had Indeterminate Colitis; which meant I could have a J pouch, yeah.

I was in my late 40‘s when I underwent J pouch creation surgery.
I had open surgery, which was by far the most difficult of the 3 stages; there was even a time when I’d thought i’d made a huge mistake, although this was short lived.

Ensure to acquire ilex paste and apply around your stoma; this will make one hell of a difference, especially if your Temporary Loop Ileostomy leaks .
I didn’t have ilex initially and due to leakage, the skin around my stoma became a painful, festering and oozing mess; luckily it was easy and quickly resolved by the application of Ilex paste.

  

 

Hi, I am 65 and completed my surgeries with the three step process.  Recovery between Steps 2 and 3 was much easier than Step 1.  The temp ileo was a little more difficult than the end one but I only had it for 8 weeks. 

I will have my j-pouch 4 years in August.  I started the process when I was just 60, with my first surgery in 2015.  

I did have butt burn for a few months after takedown but never have it now.

I have rarely had to get up at night to use the bathroom, no adult diapers, about 6-8 total bm’s a day,occasionally a little leakage(usually my fault).

All my steps were done laparoscopically any recoveries went very well.

I keep pretty active and use Lomotil usually once during the day and at bedtime.  

I was diagnosed with UC in April 2015 and had my first surgery in November, I was very sick going into my first surgery, but recovered well.

Good luck with your decision.  If things didn’t work with j-pouch I could manage with the ileostomy, but it wouldn’t be my first choice.

 

Hi pzzzzs, I turn 65 this month and had step 1 of 3 on an emergent basis in October 2016. Recovery from step 1 was the most difficult for me since I was anemic and had been hospitalized for 6 weeks. My step 2 was 9 months later. I prepared for it by gaining weight and was able to get into the gym for 3 months of strength training prior to surgery. I recovered fairly well but my main complaint was not the temp ileo but rather anal mucus discharge—very annoying, unpredictable and unstoppable. I wore a pad at work. I had high hopes for step 3. Surgery went well but I’ve been plagued with chronic cuffitis and occasional pouchitis. Fortunately I retired in January this year and don’t have the added stress of a workplace environment. I’m on Canasa and just finished a regimen of Cipro, which keeps my BM frequency around 7-8x. Butt burn—or anal pain—was/is a factor for me. Never strain while on the toilet and get a toilet seat bidet. 
Diet has a significant effect on my pouch and is a long process of trial and error. Everyone is different though, you just won’t know until you’re past step 3. All in all, I’m still glad I don’t have the unpredictable flares and swings of UC nor a permanent ileostomy. 

Absolutely a bidet!  As an example of how I am doing, went on a 20 mile bike ride today.  I had a good breakfast, took 2 Lomotil, made sure I emptied my pouch at around 9:00 this morning and it is almost 2 and I still don’t have to use the toilet yet, though probably in the next hour or so.  I typically find that I am in the bathroom more from mid afternoon to later evening. I also made sure I stayed away from my morning coffee. With Covid, no toilets available on the bike path!

I had the three step in 2004 at 42 years old. I had been very sick for about 7 months, had been on lots of steroids and was overweight. Go figure, sick as a dog and still overweight. Such is life. Anyway, all those meant I had open surgery and three step. After step one, I woke up feeling fantastic. That colon had been really making me miserable and having it gone made such a difference. Two months later, I had step 2. That was rough because I got an internal abscess, insurance insisted I go on a month long regimen of this $800.00 a day IV antibiotic and I was very sick for that time. The day my insurance okayed the surgery to drain the abscess, my surgeon called and scheduled for the next day. Things were rough from then on. I had been very, very sick. All I could do was lie in my recliner and look out the window.  I think the only reason I did not get blood clots is my dog refused to leave my side and I had to take him out to go potty. I remember standing waiting for him to go and thinking, "I could just lay down right here and sleep." I had takedown a month later. 

My surgeon would not write a note for work after 8 weeks post takedown, so I went back teaching when school started. He was an awesome doc, but I still think he should have written the note. I was so weak, so exhausted and kids just take it all out of you. They don't understand and they should not have to. I remember falling asleep at stop lights on my way home from work. Very scary. Now I know I should have napped at work before driving home, but hindsight..... It took a year to recover fully.

After all that, I have no doubt I would do it again and apparently I might have to as I have active UC in my retained rectal cuff. I have had pouchitis since about a month post takedown, but that has been well managed by antibiotics - thankfully. I am now on Humira and may be switching soon to something else as the UC is flaring again. I am allergic to Canasa, so that is no longer an option.

This all sounds horrid, but really, life has been good. UC hit me hard and fast and it was no way to live. I remember screaming on the toilet because things hurt so badly. Since I recovered from all the surgeries, I have worked full time, traveled whenever I could and felt pretty normal. I have had a few blockages, but they have resolved themselves. I have never leaked and can hold it for hours, even now with my cuff giving me issues.  I can eat almost anything I want. Until recently, the pouch has not stopped me from doing anything I want to do. 

Use the best surgeon you can find, get a bidet and put on your patience hat. It will be hard, but most of us come through it just fine. This site saved me. The people know so much and are always willing to help. Because I read almost all the archives before surgery, I was prepared and knew what to expect. 

Thank you so very much to those of you that took the time to reply. It gave me the information that I was looking for at this point which was basically the answer to the question, do I give it a shot, or do I just resign myself to living with the bag for the rest of my life? I was leaning towards the surgery because life with the bag has been less than ideal for me. Now I'm hopeful, almost anxious, to have the surgery. I'll hope for the best outcome, and get on with my life. 

I do have a few questions from some of your posts if anyone wants to answer. I could probably Google answers, but know you guys will answer in the right context.

1) What is "butt burn" and how do I avoid it? Is it like diaper rash?

2) What are cuffitis and pouchitis?

3) Am I correct in assuming that a "toilet seat bidet" replaces a regular toilet seat and has a water feed of some sort like a sitz bath? I don't think I have room to install a bidet.

 

Yes the toilet bidet does replace the toilet seat.  Mine requires an electrical outlet, so we needed to have one placed in our bathroom.  Mine is a Coco bidet, but there are lots of brands out there.  My sister has a Bio Bidet.  Her’s is better than the one I have and easier to clean,  You can check Amazon and Costco for bidets.  There are also less expensive bidet attachments.  I guess you could say butt burn is like diaper rash so you will need ointment.  I used Calmoseptine when I needed it.  I haven’t experienced cuffitis or pouchitis but it appears to be inflammation in these areas, with different symptoms and treatments.  There’s lots of information on this site that can give you more information.

I had to have the colostomy bag for roughly 9 ½ year and I never want to go back to that, although having to have my colon removed gave me my life back and I should have had the surgery when suggested years earlier, I hated it (the colostomy bag) but it was better than suffering from colitis and the unpredictable flare ups; although, if need be, and if there was no alternative, I could live with a colostomy again; I guess I would have to.

However, as I’ve said; its been 5 years since my takedown surgery and during that time, I’ve never experienced “butt burn” or had the need to use a bidet.

I use the toilet just like I did prior to  the colostomy, even using regular toilet paper, although initially I did use wet wipes and still keep some handy but don’t actually need them.

i cleanse/wipe as normal and don’t need to apply any creams or potions to prevent butt burn.

Although, I do keep ilex paste on standby to apply should I feel the slightest itch, irritation or burning sensation but very rarely use it.


You need to remember that people find this forum; either because, like ourselves, they’re considering J pouch surgery or they’re experiencing difficulties.

Forums such as this, don’t reflect the true complication free success rate of J pouch surgery.

After all, if surgery was such a success, why would anyone be looking for a J pouch forum, unless looking for support or answers etc. 

My J pouch Surgery has been a tremendous success and complication free.

Initially I had my reservation and feared the worse but at least I gave it a shot.

It was the biggest and best decision I’ve ever made, which I’m reminded of every time I use the toilet.

 

 

 

 

Add Reply

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