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surgery in the next few days, do I go jpouch or not?

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Ulcerative Colitis
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Posted 7/19/2015 4:31 AM (GMT 0)
Hello, I joined this forum a year ago but have not been good about posting. I am 49 and if you see me in the street, you think I am still competing in powerlifting. Internally, different story as Remicade ran its usefulness after 8 years. Switched to Entyvio and felt great for 12 weeks until the colonosocopy showed high dysplasia and the specter of cancer is real.

Now, I am freaking out with anxiety over the coming surgery. Is it vanity? The thought of waking up from surgery and not having my "normal" parts working is difficult for my mind to wrap around. Fear? Anger? Depression? I have all of these ruminating in my brain.

With a jaded eye, I read the problems that J pouchers encounter, wondering if this will be me. I feel shallow in not wanting even a temporary ileostomy let alone consider having one permanently. Then the thought of yet another surgery to add a j pouch has caused me to pace the kitchen floor for hours the past few nights while my family sleeps.

Am I just venting or looking for advice? Some of the former, but looking for encouragement. thanks, john
Posted 7/19/2015 4:50 AM (GMT 0)
Is the plan right now to do a permanent ileostomy? Either way, the prospect of surgery is scary to the hardiest of people, so what youre feeling is certainly normal. If I were in your shoes Im sure Id be going even more crazy.

While I dont know your full medical history, I dont see why you wouldnt be able to get a j-pouch, if that is something you would prefer. Many (most?) people have great success with them. The primary down side if that you will need at least 2 surgeries rather than one. The up side is that should you tire of the j-pouch or it just doesnt work for you, you can always go for an ileostomy at a later date.

Not sure if that is what you were looking for, but I hope it helps. Keep us up to date with what you decide though!
Posted 7/19/2015 4:55 AM (GMT 0)
Hi john, sorry to hear you're go through this. As you know, both j pouch and osteomyelitis have their pros/cons and you have to try to figure out what's best for you and your life. It's unfortunate the colon has to come out, but it sounds like your health is dependent on it. My advice to you would be to make your decision, and move forward with it and not look back. You will adjust to your new normal and be able to move on with the rest of your life. We're here for you
Posted 7/19/2015 5:08 AM (GMT 0)
It is funny in that my friends are telling me that this is a positive step that in one year I will look back at this moment as some kind of victory. After all these medications ( massive doses of Prednisone, Asacol, 6mp,Rowasa, Remicade, Entyvio) stopped working it is hard to envision success even from surgery.
Posted 7/19/2015 10:39 AM (GMT 0)
No one can tell you which option to chose. You have to do the research. The j pouch procedure has a very high success/satisfaction rate .....somewhere around 93%. I went with the odds and I'm very happy with my j pouch. That's all I can really offer to you....sorry you're in such turmoil. I remember all to well how scared and freaked out I was right before my surgery. But it's true what your friends said....it will all behind you before you know it and you'll be enjoying life UC free no matter which option you chose. All the best to you.
Posted 7/19/2015 8:08 PM (GMT 0)
I understand your feelings completely and it is exactly how I feel after I met with a surgeon earlier this month. For now if Simponi continues to improve me my Dr is willing to let me put it off but if my upcoming scope shows any abnormal cells like yours she says I have no choice. So now I am terrified to schedule my scope!!!

I honestly feel like I can't handle an ostomie and dread that part and like you I worry about the results of the jpouch. What if I still go 8 times a day??!!

My friends and family are all for it and have similar sentiments to yours as they keep saying in one year this will be over and you will be cured. But in my head it isn't that easy!!! I wish you luck with your decision, it is not easy!!!
Posted 7/19/2015 8:18 PM (GMT 0)
Going 8x a day with j pouch is NOTHING like going 8x a day with a diseased colon. Just FYI.
Posted 7/19/2015 8:24 PM (GMT 0)
I'm facing the decision for J-Pouch surgery as well. I've run all med options. My sister had her J-Pouch 22 years ago and has been doctor, med and issue free ever since. Yes she goes to the bathroom 4-5 times a day but it's just to "empty" her pouch, it's not due to any type of disease. She said her stool is pretty much soft / liquid as you don't have the colon anymore to absorb the excess water. She said if she feels the need to go she can hold it, sometimes for hours till she can find a bathroom. She virtually eats what she wants with no issues. I've had a colon resection, removing 15 inches. I had a bag for 4 months and yes it can cause you some mental stress about having one, I went through it, but after I got the hang of it, it was like second nature. I know exactly what to expect coming up with the bag)
Posted 7/20/2015 1:33 AM (GMT 0)
John, it's a serious surgery with risks and it's perfectly normal to be nervous, I am sure everyone is. It's the unknown, and. 95 percent of patients are happy with their jpouch, and many wish they'd had it sooner. Uc urgency is gone, as are medications. Jpouchers poop 4-6 times a day, a quick process done while they pee.
Posted 7/20/2015 1:51 AM (GMT 0)
How can the surgery already be scheduled and the decision about j-pouch not already be made? Isn't the pouch formed in step 1?

I figure the ostomy is the same temp or permanent, but they have to be planning for what else they will do in there. I assume the ostomy-only surgery s shorter and the room is not booked for a long.
Posted 7/20/2015 3:20 AM (GMT 0)
I had a perm ileostomy installed 4 months ago. A j-pouch was not recommended because I am on lifelong immunosuppression because of a liver transplant, and leakage/infection could go bad and endanger my liver. The surgeon would have done it, but I wasn't an ideal candidate. Plus, I have had more than enough surgery in my life.

I did not have any dysplasia. My UC was just really bad and would not respond to anything, including Remicade. If I had been a good candidate for the j-pouch, I would have gone for it. I do fine with my bag, but would get rid of it in heartbeat if given the opportunity. It is life-altering, and it is forever, for me.

Yes, the unknown is scary as hell. Everyone is different, but for me, not trying for the j-pouch if I had the option would have led to regret and a lot of "what ifs". I still have days when I wonder if I should have tried it anyway, but realize that I made the best decision I could make at the time.

Without knowing your medical history, it's hard to make a recommendation, really. But, if you were a friend of mine asking for advice, and your surgeon says he is comfortable with doing a j-pouch, I would say give it a shot. You can always go to a perm ileo if needed.

Post Edited (k-del) : 7/19/2015 9:25:53 PM (GMT-6)

Posted 7/20/2015 12:04 PM (GMT 0)

DBwithUC said...
Isn't the pouch formed in step 1?.

In a two step procedure, yes. In a three step procedure, no.

Two steps:
1- proctocolectomy and j pouch creation. Temporary loop ileostomy is placed.
2. Takedown (ileosotmy reversal)

Three steps:
1- colectomy and end ileo placement
2- rectum removal, j pouch created, temporary loop ileostomy placed. (replaces the end ileo)
3- takedown/ ileostomy reversal.
Posted 7/20/2015 1:14 PM (GMT 0)
You can always stick with your temp ileo, give yourself some time to get healthy, do more research and make a decision later. You do not have to decide this right now.

Sue
Posted 7/20/2015 1:20 PM (GMT 0)
I just got confirmation of the dysplasia from a second pathology reading from a colorectal pathologist. The surgeon in AZ that I am using has been doing this surgery for 40 years. So I meekly said to go ahead with the jpouch.

Laying in bed last night, I felt ashamed that I did not have more conviction. I also suffer from anxiety/panic attacks ( who knows, with the colon gone, these may lessen ?)
Posted 7/20/2015 1:40 PM (GMT 0)
Good for you! I think you're making the right decision in your case. You said that the thought of the temp ileo scares you, having it probably isn't going to be any easier. Knowing that it's temp, even if you choose to keep it for a while, will help you through. I know multiple surgeries is not ideal but there is a light at the end of the tunnel. Good luck :)
Posted 7/20/2015 5:09 PM (GMT 0)
You'll get through this! Think positive thoughts. I've been there and I know how you feel. You'll do great!!
Posted 7/20/2015 5:25 PM (GMT 0)
SO will it be 2-step or 3-step j-pouch. The 1st surgery is different depending. This is why I am confused that it is already scheduled.

Whatever, I hope it goes very well for you. Log in for support during your recovery.
Posted 7/20/2015 8:07 PM (GMT 0)

johnlamb said...

With a jaded eye, I read the problems that J pouchers encounter, wondering if this will be me. I feel shallow in not wanting even a temporary ileostomy let alone consider having one permanently. Then the thought of yet another surgery to add a j pouch has caused me to pace the kitchen floor for hours the past few nights while my family sleeps.

John,

I'm going to say something that is maybe provocative but the few vocal critics of J-pouches that currently have j-pouches I would say that they are not getting proper treatments for their pouches and most likely have untreated pouchitis, or haven't found the right antibiotic(s) yet.

I am in the unfortunate small minority who have chronic pouchitis and need to take daily antibiotics. If I properly treat the pouchitis then I don't even notice it. Finding the right mix did take me trying a few different antibiotics but pouchitis symptoms are nothing even close to UC.

The other thing is that the end ileo will be a bigger surgery than most of us have for our step-1 because they will probably remove your rectum, anus and sew you up during the procedure.
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