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Question for J-Pouch/Surgery Veterans

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Ulcerative Colitis
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Posted 3/30/2014 1:56 AM (GMT 0)

Indycat23 said...
If it got me into remission, I'm ok with taking vedo or another drug for the rest of my life. I do understand it is a bit of a gamble with long term side effects but I am ok with the risks.

I'm just curious since I'm out of the drug loop....how is vediolizumab different from the rest?
Posted 3/30/2014 1:21 PM (GMT 0)
Indycat, I know what you mean about being tired of the whole mess.... I'm in a bit of a different spot than you because even if I go into remission on another biologic, the stricture is still there. I don't have the patience to wait until it's absolutely necessary to have surgery, I do not want an emergency "anything"! I'm ok with my upcoming surgery, truthfully... I like & trust my surgeon, I am mentally ready to do it, I have all work/family details ironed out.... It's going to be a relief, in all honesty! I'm looking forward to the car ride home from the hospital & not CARING where or when I get to a bathroom! I haven't been following the new biologics much, but is vedolizumab not approved for UC use yet? Why the delay in trying it?
Posted 3/30/2014 2:15 PM (GMT 0)
Vediolizumab is not approved yet. Hopefully this summer. It's gut specific and works in a different way than tnf blockers. It's seems to be the last drug on the horizon for a couple of years. I have no desire to go another 2-3 years of suffering with this disease and consider this my last option drug-wise.

Eva-good luck with your upcoming surgery. A small Part of me hopes my surgeon will offer a compelling case that will convince me to get the surgery right away.
Posted 3/30/2014 5:42 PM (GMT 0)
Thanks! That statement right there, your last few sentences- that alone is reason enough to move ahead with it! I had surgery scheduled 7 years ago & cancelled it, and once more since then. And every time I think of it, cancelling it, I wish I had gone ahead with it- because then I'd be this much further out, this much better, etc. That feeling of regret has been a big factor in my decision to just go ahead with it.
Posted 3/31/2014 1:33 PM (GMT 0)
I guess the only thing holding me back other than the potential of Vedolizumab is the general fear of surgery. I think I want to be out of options so I can reconcile the fact that I gave it everything and surgery was my only option left.
Posted 3/31/2014 2:24 PM (GMT 0)
I had surgery in 2001 when the last drug of choice was 6MP. Since that time a host of maintenance medications and two biologics have come on the market for UC. I'm glad I didn't wait for those drugs to be introduced as I have now had 13 years of excellent health. I lived in a 2.5 year flare when I ultimately decided on surgery; I wished I had opted for it earlier in that period. I've learned these past 13 years that I still can't get that 2.5 years back and it makes me sad. I missed out on so much during that time because of UC. Post surgery I take advantage of every opportunity I get; life is very very good and I have no regrets on moving on from UC to a life that is free from disease, diets, and medication.

Sue
Posted 3/31/2014 3:01 PM (GMT 0)
Sue-I can definitely understand having regret about missing out on things because of UC. I certainly regret not having the ability to fully engage with my children. I feel like a 80 year old because I run out of energy pretty quickly.
Posted 3/31/2014 4:09 PM (GMT 0)
Indycat, will you give the "drink your own pee" option a go before surgery?? haha...
Posted 3/31/2014 4:11 PM (GMT 0)
LOL it's an interesting morning here on HW.
Posted 3/31/2014 4:24 PM (GMT 0)
Ha ha. I'll pass on the urine therapy for now.
Posted 3/31/2014 4:26 PM (GMT 0)
I was just released out of the hospital from step-2 of a 3 step j-pouch surgery on Saturday afternoon.

I found that having Family & Friends visiting me really wore me out after their visits. It was really nice to have company before I went in for surgery and after I got out from the operating room but it was really draining on me physically to have visitors while I was recovering in the hospital. If people insisted on visiting I made them come in groups, not individually because I couldn't deal with people showing up all day long.

I was well cared for, I had a private room with nurses who specialized in dealing with post-surgery ileostomy patients and doctors visiting me at least twice a day. Once my family and friends realized that I was receiving top quality care they were not so insistent on visiting as often as they wanted.
Posted 3/31/2014 5:22 PM (GMT 0)

Indycat23 said...
Sue-I can definitely understand having regret about missing out on things because of UC. I certainly regret not having the ability to fully engage with my children. I feel like a 80 year old because I run out of energy pretty quickly.

I missed out on so much time with my boys as they were little when I was dx'ed with UC. I was even hospitalized on my youngest's 5th birthday and couldn't celebrate with him. I'm so glad to be done with this disease!
Posted 3/31/2014 5:23 PM (GMT 0)
K, I did have a horrible time with dehyrdration, as Liz mentioned. I was readmited twice, and was getting about 1.5-2L of output even with max doses of Lomotil and on IV pain meds. It was awful. And to make it worse, the liquid output was causing leaking issues for me, so my skin was a mess. The tincture of opium finally did the trick for me - but it is hard to get a prescription for it filled. CVS and Walmart and the local grocery stores wouldn't even touch it. Finally, I got a Rite Aid to order it for me - but nobody else would, so I got dehyrdrated again while I waited for the order to arrive. So they discharged me with a PICC line, which I kept for a month at home and did daily IV treatments. Not fun, but it worked.

Indycat, I have no regrets about the surgery. I am coming up on a full year from my colectemy this week, and while there were rough moments, the ability to live my life normally, play with my kids, go for a run (a new hobby I couldn't participate in with UC), ride the Metro to work without fear .... I wouldn't trade it for anything. The meds were not a fix for me, and the surgery was a godsend. I feel so good now. My pouch works great, and I no longer have any issues. Life is good.

Good luck!

Posted 3/31/2014 6:58 PM (GMT 0)

PSUDOC said...
K, I did have a horrible time with dehyrdration, as Liz mentioned. I was readmited twice, and was getting about 1.5-2L of output even with max doses of Lomotil and on IV pain meds. It was awful. And to make it worse, the liquid output was causing leaking issues for me, so my skin was a mess. The tincture of opium finally did the trick for me - but it is hard to get a prescription for it filled. CVS and Walmart and the local grocery stores wouldn't even touch it. Finally, I got a Rite Aid to order it for me - but nobody else would, so I got dehyrdrated again while I waited for the order to arrive. So they discharged me with a PICC line, which I kept for a month at home and did daily IV treatments. Not fun, but it worked.

Good luck!

took 7 pharmacies to find one in NYC that had tincture of opium. ugh

I am currently on Loperamide 2mgs x 2 every 6 hours, Diphenoxylate x2 every 6 hours, Tincture of Opium 1ml every 6 hours and Metamucil twice a day.

I'm not sure it is working because I'm still around 1.5 liters of output, I also ended up vomiting last night at 1AM. Maybe it was from all the meds, sleeping all day and not walking around enough.

My surgeon said if things don't change then he might schedule step 3 the reversal right away instead of waiting 3 months. They did the enema pouch scan and there were no leaks....this would not be what I want but it might be my only option and I trust my surgeon.
Posted 3/31/2014 9:34 PM (GMT 0)
Is it just me, or does it seem like most of the dehydration/high output issues come with the loop ileos? The ones with end ileos seem to go on their merry way, & deal with output simply by eating different foods, to thicken or loosen as needed. But all those on Step 2 seem to have a real tough time with the loop's... I'm freaking out, I want my little end ileo to be a trusty partner!
Posted 3/31/2014 9:41 PM (GMT 0)
Eva, it is solely a loop ileo issue. End ileos rarely have these issues, and when they do it is almost always temporary. Loop ileos are a necessary evil towards getting a j-pouch.
Posted 4/1/2014 1:23 AM (GMT 0)
And many of us that had loop ileos never had an issue with hydration.

Sue
Posted 4/1/2014 1:31 AM (GMT 0)
I never had any dehydration issues with my loop.
Posted 4/1/2014 3:47 AM (GMT 0)
A loop Ileostomy is still better than having a colon with aggressive UC. No pain, no running to the bathroom, no arthritis, and I expect to have more energy once I recover in a few weeks than I had while flaring with UC. I will just have more predictability in my life with a loop Ileo for 3 months than having UC.

My end ileo was great, I could eat and drink whatever I wanted... I felt so good about a month before I went for my loop ileo with J-pouch construction I almost didn't want to go for the surgery.

Eva, I think that you'll like your End Ileo once you adjust to having an ostomy. The toughest time that I had was learning how to change my appliances but once I found the products that I liked it was much easier and they preformed better than the products that I started with(Hollister). I really recommend Coloplast ostomy products with a belt and brava strips, they are very comfortable and have good wear times.
Posted 4/1/2014 1:13 PM (GMT 0)
at this point I can't wait to jsut get going with it! Yes, I'm dreading the pain associated with the surgery, & am a bit nervous about it. But every AM, when I'm sitting on the toilet for the 5th time, I think "Not much longer!". Every gas twinge, every mess in my pants, etc. I'm even looking forward to trying different products. Maybe it's unrealistic to be looking forward to a life-changing, body-altering surgery like this, but it's been a LONG 10+ years of UC hell. I know that meds & diet are not working, and have not worked, for a long time now- I need to try something else. I can't be thankful enough to all the surgery vets on here & the ostomy forum- everyone has been so supportive & informative. I'm not scared about an ileo at all!
Posted 4/1/2014 3:01 PM (GMT 0)
Eva,

I surprisingly had very little pain my first surgery, they couldn't do it laproscopically so they had to cut me open (29 staples). I did have an epidural for 4 days for pain management followed by Oxy & Tylenol for 2 days while I was in the hospital. I was released with 2 weeks worth of Oxy and Tylenol for pain, I probably used it for about 7 days before I didn't need any pain meds.

The time that I had the most pain was getting in and out of bed when I didn't have help.

The best thing that you can do for pain is get the epidural for pain management and walk as much as you can after surgery.
Posted 4/1/2014 3:17 PM (GMT 0)

ActiveUCer said...
Are you ready to take vediolizumab for the rest of your life?

Why on earth wouldn't you be?

Personally I'd rather be on Vedolizumab for the rest of my life than have an ileostomy/j-pouch. Only if it kept me in remission obviously. But if it did, the choice would be a no-brainer for me. I'd rather take my chances with the rare serious side-effects of biologics, than suffer from the unknown side-effects of losing 90+% of my gut bacteria and serotonin.

(My former hospital, St. Mark's, apparently have some study on the go about the changes in metabolism post-colectomy.)
Posted 4/1/2014 3:40 PM (GMT 0)
Thanks ks! Mine willbe part lapro, & part open- the "top" of my abdomen will be lapro, but the "bottom" has got to be open, mainly due to repairing the RV fistula & removing the rectum & anus. Gross. You're like the 3rd person who recommends an epidural- I've got to go meet with anesthesia on Thursday, for pre-op stuff- pain control is my MAIN subject to discuss! For Indycat, I'd be ok with being on a biologic long-term, but only if it helped amazingly- like, zero symptoms, clinically or anectdotally.
Posted 4/1/2014 5:18 PM (GMT 0)
Eva,

I never wanted the Epidural prior to surgery, it actually scared me. 4 days after my first surgery I didn't want them to take the epidural out because it was working so well and I didn't want any pain.

By the way, the epidural to put in is no big deal (30 seconds) and removing it is just as easy. They will give you a mild sedative to help prior to the epidural.
Posted 4/1/2014 5:51 PM (GMT 0)
After my experience with an epidural, I am never having one again. It worked brilliantly for the time it was in, then started to fail in the middle of the night - the 2nd night after surgery. It took about 2 hours for the effects to wear off completely, during which time I went from 0/10 pain to 10/10 pain. (Maybe 9, but whatever it was, it was not tolerable.) It took the staff hours to fix me up with more pain relief. I was crying with pain and anger; the rest of the ward must have been kept up all night along with me. It was an absolute disgrace.

If you have competent night staff who can cope with an epidural failure, then go for an epidural. For me, that was one of my most horrible and degrading experiences in a hospital, so no, I'll never be having an epidural ever again. From now on they can give me a self-administered morphine drip - where I have control - or they can just jog on, the useless bunch of incompetents.

Post Edited (NiceCupOfTea) : 4/1/2014 11:54:23 AM (GMT-6)

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