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Final jpouch surgery in 9 days! Some concerns!

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Posted 2/7/2015 4:35 PM (GMT 0)
So my final jpouch surgery is February 16th. I am so ready and counting down the days. Just wondering if this will influence whether the surgery can happen. Around my stoma I have had consistent skin irritation. Burning, itching, etc. It is very red and there are places where, when I am cleaning it, will start to bleed. It's not very severe but it is still highly annoying and uncomfortable. It is a swollen red ring around my stoma. I have only had my ostomy for 8 weeks and am still very new. I don't think I cut my wafers just right or use the correct tools to help it like paste, rings, etc. I do use stoma powder and it helps a little but it is still pretty bad. I was just worried that it would influence whether I could have the surgery or not because I heard they go through the stoma opening to reconnect everything. I'm so ready for this to happen and just really worried this could mess it up.
Also, I have heard stories of people who had it really rough right after surgery. Saying that it was like they had colitis again. Going 20 times a day, urgent, etc, but then they say it settled after a while and they are all good now. Just wondering if this is common or not after getting your jpouch. if anyone has experienced it, how long does it take to settle (days, weeks, months?) thank you anyone who responds! I appreciate hearing all of your advice!
Posted 2/7/2015 9:58 PM (GMT 0)
I just wanted to wish you good luck. My step 3 jpouch surgery is February 13. My skin around the stoma is not the best either but my surgeon didn't seem too concerned about it. I am not worried about the surgery or what happens after it. I am just ready to move on. I'll be interested in hearing how you are getting along.
Posted 2/7/2015 10:02 PM (GMT 0)
Thank you! Good luck to you as well! :-)
Posted 2/7/2015 11:25 PM (GMT 0)
Not much to offer honey-but my support. My daughter's third surgery is Mar 23. Her skin is funky too, lots of red with the loop.
She too just wants it all over. The ket test is the barium enema to look for leaks in the pouch, if that is clear they go ahead. Ours is March 11- are they doing a pouch check for you? Buckeye, good luck to you too. Next step, here we come.
Posted 2/8/2015 1:22 AM (GMT 0)
The skin around my stoma was a disaster. They will still do your takedown so don't even concern yourself with that. Yes, they will go thru your stoma to do the hook up. I was only in the OR for 30 minutes. I was so surprised when I woke up that it was so quick!

Takedown (for me) was really easy. Minimal pain, bowels woke up within 12 hours of surgery, and only a 4 day hospital stay. I never went more than 10x in a 24 hour period. And within two weeks it was 4-6x a day. And still is four years later. The worst part of it was the gas and the spasms. That lasted about 5 days. As I'm sure you've heard a thousand times, we are all different. We hope for the best but always prepare for the worst.

Good luck!!

PS - Go very slow with food at first. Especially the first week while everything is still swollen and healing inside. Soft, easy to digest foods are the best. I ate scrambled eggs, toast, pasta and yogurt until I felt more adventurous and confident. You will be surprised sometimes at the food the hosptial will serve you while your there. Just use common sense and you'll be fine.
Posted 2/8/2015 1:28 AM (GMT 0)
I think the loop is much harder to manage than the end ileo so the skin is just not going to be as good. During pretesting, I had a barium enema and then the surgeon also did a flex sig because she said she wanted to see the pouch. She was very happy with how it looked and I got to see it too. The tests were nothing compared to everything else we've been through. I continue to be amazed by what the surgeons can do. Katmom I hope everything goes well for your daughter. My heart goes out to the kids and younger people that have to deal with this terrible disease.
Posted 2/8/2015 4:10 AM (GMT 0)
Thank you everyone!
Katmom- thank you for replying! I did have the test but it was at my post op appointment a few weeks ago.
Marianne- thank you for the advice! I'll have to go slow with food. I don't think I did that for the first one and my appetite has never fully gone back to normal. Also, talking about the skin not being a problem definitely eased my mind about it!
Posted 2/8/2015 3:08 PM (GMT 0)
I wouldn't worry about the stoma issue too much, if anything it makes sense for them to go a head and then you won't be having issues with that site. They may however have to do more of a dressing on that area to assist with healing.

As far as after surgery, you may very well feel like it's worse then when you had colitis for a bit, but it gets better. They tell you not to try to hold your bowel movements too long after the surgery, you need to heal and get use to the whole new process. It gets much better, and when you have healed some and are feeling a bit more normal and can hold your movements for longer periods of time it gets easy. There is some work involved in learning how and how long you can hold your bowel movement for, so give it some time.

A tip for at night, try not to eat/drink a lot before you go to bed, I know for the first bit I had to get up at least once every night to use the bathroom. Limiting your consumption in the evening helps. Now I can eat and drink at night to a certain amount and not even need to get up during the night.

I just celebrated my first year surgery date (Feb 6th 2014), my reversal was on May 20th and I feel great. I usually have 4-6 bm's a day and don't usually have any problems holding them when I can't get to a bathroom. I may be lucky with how my surgery went and my outcome but hopefully you will be too.

Good luck and enjoy your new life!
Posted 2/8/2015 5:55 PM (GMT 0)
I had my takedown a little over 2 weeks ago (heading to the surgeon for my follow-up appt tomorrow). Apparently surgeons (even those in the same hospital) close the ostomy wound differently. Mine put a couple of staples on each side (which get taken out tomorrow) and then I pack the middle 2x a day. Hurt quite a bit in the beginning but feels pretty good already. I've been averaging about 10x day since my bowels woke up (within 24 hrs of surgery). But it is soooo different than going with UC. The pouch just empties when I pee...and I'm in and out of the bathroom in a jiffy. I do get up in the middle of the night...usually twice (but I'd been doing that for so long anyway it's no big deal). I have had a couple of nights where I must've been in a deeper sleep and didn't quite make it to BR. I've just used pads overnight...again no big deal. Surgeon said that should go away in time as sphincter muscles get stronger.

Compared to my first surgery, this one was a breeze. I was only in the hospital 3 days (surgery Fri afternoon and home Monday pm). With Step 1 I was napping constantly for the first 3 weeks and did not have much of an appetite. For the whole 3 months, I had skin issues and I think partial dehydration issues as well and pretty much felt exhausted. Can't say I felt like myself until about 2 weeks before takedown! With this surgery, I have never needed a nap after the first day. Have been walking pretty much everyday, getting out for meals, driving, etc. Hope to be back to the rest of my activities as soon as the old ostomy site heals completely.

I did bring wet wipes, soft toilet paper & calmoseptine cream to the hospital with me. Still got butt burn! However I have recently found that what works for me is powder and not cream! I started using corn starch 2 days ago and have almost no irritation today. Still using the Huggies wipes. Feel free to ask me any other questions as it's so recent for me I should remember! Good luck!

Vicki
Posted 2/13/2015 3:29 PM (GMT 0)
Thank you everyone! Only 3 more days until reversal!

Uclogic- congrats on your one year surgery anniversary! Sounds like you're doing well! I'll have to take your advice about not snacking too much before bed!

Vicki- thank you! I will definitely have to remember to get wipes and stuff for the butt but just in case! Do you happen to know if they have stuff like that available for you at the hospital as well?
Posted 2/13/2015 3:38 PM (GMT 0)
The only thing I saw at my hospital (Univ of Fla Shands) was their nasty scratchy TP. I would definitely recommend bringing your own :)! Good luck Monday...it's really liberating to be rid of the ileostomy! 3 weeks for me today and pain at old ostomy site pretty much gone (although I'll still be packing it for a couple more weeks). No food issues here...I've even had a couple of beers! Surgeon said "see you in a year for your pouchoscopy" when I went on Monday so now I'm just looking forward to 3 weeks from today (6 weeks post-surgery) to be back on the golf course! Woo Hoo!

Vicki
Posted 2/13/2015 5:22 PM (GMT 0)
Amanda,

good luck to you. Cant help you with info because i havent had any surgery yet. I am having surgery the same day. hope this brings a great outcome to us both. K
Posted 2/13/2015 8:21 PM (GMT 0)
Thanks again Vicki! I will make sure to get some supplies to bring! Glad that you seem to be doing so well! :-)

Kari7- thank you! Good luck to you as well! :-) are you having the same surgery I am (jpouch) but the first step? Or will you be keeping your ostomy?
Posted 2/13/2015 10:16 PM (GMT 0)
Hi Amanda,

Thank you for the good luck wishes. Hope it goes well for both of us.
After debate I decided to do permanent ileostomy and not do jpouch. My reasoning is that I have other complications related to colitis that a jpouch and more surgeries can negatively affect and I can't risk it. If it was only uc I would do jpouch... Oh why life can't be simple.
anyway I hope next week is a the beginning of much better time for us both.. and our families.
Are you off school or work? Sorry if asking stupid question.
Posted 2/14/2015 6:15 AM (GMT 0)
It's not a stupid question! And I compeltley understand your comment about life not be simple! I often ask myself that question too, ugh! I'm 19 and am in college with two part time jobs. One at a creamery scooping ice cream, other at a daycare. I am on a break from school because of all the sickness, surgeries, etc. I have taken quite a few online classes however to prevent falling too far behind. None right now though, planning to return full time in fall semester. Have not been to work since beginning of December right before my first surgery. Took a while for me to feel right so just took a break until this one. My creamery job is standing for the whole time I am there but I was very fatigued and just would not be able to do it. My surgeon suggested steering clear of the daycare for a while only because kids are so unpredictable and he was worried one would injury my stoma site somehow. Planning on returning to both jobs after this surgery hopefully in March if I feel up to it!
Posted 2/14/2015 12:17 PM (GMT 0)
wow, Amanda, i am very impressed with you. College and two part time jobs. I could see how standing would be fatiguing and being with kids both fatiguing and possibly harmful to the stoma.

its good you can take online classes, what an amazing invention, isnt it? when you take exams do you have to be at the school?

I have taken the next month off. In the past week i could hardly work because every time i ate something i had to run to the bathroom. I am essentially on no meds (am on Uceris but its a joke for my colon) and just waiting for the surgery. In the last year plus i missed work, stuff with my kids, was in bed a lot, and suffered a bad complication of the colitis (which is why i am not going to jpouch). In july i was signed to a continuing education 3 day seminar but could not attend it as i had to be next to the restroom all the time and the prednisone wasnt working. Am now doing only online continuing education units.

this surgery could, after recuperation period, give you the strength you need to continue school, and work your jobs, or maybe find something else. Take your time, dont run ahead. and try to rest :-)
i truly admire you dealing with this and with college and working. Sounds like you are an amazing young woman.

Good luck. May next week bring a new and improved change to both our lives.
Posted 2/14/2015 2:23 PM (GMT 0)
Thank you very much Kari! It means a lot to hear that! The exams depends on the class. One semester for chemistry I had to go in to the school once. My others were just all online quizzes and exams! It's great you are still doing online courses as well! It really is an amazing invention! :-)
I'm sorry, it sounds like you've had a rough time as well having to miss out on some things. Trust me, the bag is hard at first, but I'm pretty much used to it now. I know at some point the pouch could fail or whatever and I'll need an ostomy forever and I am prepared for that. Even though it is a big pain at first, it is still better than before. Prednisone was the only thing that worked for me. I was steroid dependent for two years straight which is why I chose surgery. Now on no UC meds at all with the bag and all is great! Being off pred for the first time in two years feels awesome! I think you will feel so much better after this and I too hope this will be beginning of something awesome for us both! :-)
Posted 2/14/2015 5:09 PM (GMT 0)
I am so excited for you and can't wait to hear how it goes. It seems like you just had your step one. Time really passes quickly. I am sure everything will go smoothly. I have very sensitive skin too. I would imagine if I had the stoma, i would have all sorts of skin problems. At least it's temporary. Good luck!
Posted 2/15/2015 3:43 AM (GMT 0)
Wow you've had quite a few great responses, but I figured I'll throw in my experience as well. So I highly doubt any skin irritation around the aroma site will interfere with the take down, I had a bit of irritation as well, it goes away. As far as the crazy BM's post-op my experience was not in the hospital. On the pain meds and very restricted diet I wasn't going too often but once I got home and got off of the pain meds the frequency certainly went up. So I was/am on regular Imodium and eat my bananas and peanut butter still, anything to thicken it up.

The first few weeks are pretty rough and the butt burn (at least for me) was excruciating and uncomfortable, just get some desitin or calmoseptine ointment and take lots of hot sitz baths (seriously the greatest thing ever). Make sure you follow the dietary orders strictly or you'll regret it. But other than that, good luck with the surgery and the recovery and enjoy your new plumbing!
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