Hi all!
I had my 2nd and final jpouch just removed on 10/5/09 (now post op day 6)and I am home. I am in alot of pain just like I was in the hospital. Unfortunately, I am allergic to almost every pain med so immediate post op was a true nightmare for me...total agony! I am allergic to dilaudid, fentanyl, morphine, demerol, percocet...list goes on..only thing that kinda helped me was iv toradol with liq vicodin when I could take po. I had 2 allergic reactions in the hospital to dilaudid and fentanyl...very scary...hives, itching from head to toe with drug fever and heart rate to 140! Some of the nurses made me feel crazy but otherwise my surgeon and the rest of the staff believed the meds were only making me worse and not even touching my pain..at times I felt like I was going in to shock and with shallow breathing because the pain was so bad..worst I have ever felt!!! Not trying to scare people here...it's just my genes...my Dad, his mother and my brother all react the same way..not fun!! Anyways....I have some questions...I am feeling very frustrated to say the least...I can't sleep and I have the worst reflux ever ever since I had the ngt (in for 3 days)! I expect my throat to be sore..can handle that, but I can't lay even half propped up with pillows or I feel like I'm gonna vomit..I have this constant feeling of swallowing something in my throat and coming up my esophagus which of course is gerd..I have been on protonix for years but never had these symptoms..still taking the protonix along with tums, pepcid complete...nothing helping!!!! Any ideas? NOt helping my already not too great of an appetite to begin with! My abd is very swollen and to be expected for many weeks...I had lots of adhesions removed that is why the ngt had to be put in to begin with. My next issue is that my stoma is ok but the spout is pointing downward into my skin...never had this with my loop ileos...nervous it's gonna break down my skin..my ET nurse told my not to worry unless they are worried but I am of course still upset about it!! They said the swelling will go down which it has already and might tip the stoma upward to bring the opening more to the top? I guess that makes sense. My last issue is that I chose to not have my butt sewn up for now because my surgeon said that wound can be very painful on top of everything else I'll have to deal with...all I was looking forward to after 6 years of rectal leakage, was to wear my underwear without a pad!!!!!!!!!!!! Not there yet because now I am having pinkish mucous drng rectally on top of bleeding vaginally (not my period...surgeon said it's from all the work he did inside and drng has to go somewhere)!!! So frustrated...I know I am strong but I just sit and cry and wonder when I will truely feel good!!!! seems so far away! So now if the mucous rectal drng continues I have to go back outpt to have my butt sewn up...more pain I'm sure!! So sick of this!!!!!! I have to take it a day at a time but I just feel awful!!! Really need some encouragment right about now! My friends, boyfriend and family are amazing so I know how lucky I really am but all of you are the ones who REALLY understand!!! Please help..need some sunshine!!!!

yike! Allergic to pain meds. I feel for you! I wish I had some solutions but all I can say is "you are strong and you will get through this!" I would suggest having a whole lot of distractions. Rent a whole bunch of movies, or get addicted to a tv series you never got a chance to see...I recommend 24 or Lost on DVD. I had my pouch and bum removed last year and the healing has had some major bumps along the way, but it has been soooo worth it. My ostomy points to one side and that is usually where the wafer breaks down first but I change it every 3-4 days and the skin is fine. Good luck. Keep venting until you don't need to vent any more.

I had my rectum removed and a hernia repaired last December. It was not considered an outpatient procedure for me, in fact I was told to expect to be in the hospital 7-9 days. I felt very lucky when I was released after 5 1/2 days. I had vaginal drainage that continued for almost a month. About 12 days after surgery I developed a high fever and abscess which threw me back into the hospital for a couple of days. I empathize with the pain you are going through and hope that you heal quickly.

How about having an epidural when you have your rectum removed? Or have you had bad experiences with that too?

Jan

So, so sorry. Have only had one semi-allergic reaction to pain meds and it was terrible. Hang in there, hang in there. Get something beautiful for you to look at brought in: gorgeous flowers or an absolutely stunning book of photography. Laugh, try to laugh. Get old sitcoms or whatever makes you laugh now and gorge yourself.

Blessings,
Gin

Porsh I'm glad to see you here; I've been wondering how you were. Sorry the surgical stuff was so hard.

Can't help on the reflux side, but don't panic about the stoma. Mine points straight down and always has. Also, is fairly short. I use Convatec convex moldable wafer with an eakin seal and have never had a leak, except when I have forgotten to snap my appliance together well enough (can't really blame that on the appliance or my body, just my absent mindedness).

Let me know if you need to chat.

I have same issue but if I take high dose's of bendryl SP? it works great still itch but no where as bad same with hives etc I have gotten used to it I think also since 06 I have had 14 surgeries and all of them hell, always stayed there for months after surgery.

But try that tell them every 4 hrs give ya that if ya have not tried this....

Hey porsh22...What was the final straw for you to give up the J Pouch and go for the permanent Ileostomy? I was originally diagnosed with UC in 1999 and had the J pouch surgery and takedown in 2000-2001. Now they say I have Crohn's! Anyway, I am on a tremendous amount of meds (prednisone, Cimzia injections, Lomotil, Flagyl, and other as needed prescriptions). My problem is chronic pouchitis, 15-40 bathroom trips a day and a very irritated and inflamed "bottom". I am 39 years old and have dealt with the pouch for 9 years now and am very reluctant to go with a permanent ileostomy, but everyone tells me how much better my life would be! I guess my vanity is the main thing holding me back! I will take any advice from people who have "been there...done that" to help me make this decision. Thanks

Tarynnjosey,

I had my pouch for 3 1/2 years and had chronic pouchitis the whole time. I was on 1000mg of CIrpo daily and weighed only 98lbs. I couldn't go out, had to go to bed by 9pm I was so exhausted, couldn't eat a normal diet, couldn't do anything a 30 year old would want to do. I was married and wanted to have children, but couldn't while on Cipro. I never had a remission.

I decided to have the pouch out (at 30) but got talked into just disconnecting it. While my ileo worked great, my pouchitis never went away. 18 months later I had the pouch out and have been 100% healthy and happy since! Pouch was removed in April 2003.

I take no meds, eat what I want, when I want, sleep if my kids do (yup, two kids post pouch removal!) and do all of the things I used to do. IN fact, I do a lot more than before because I have such a sense of freedom with my ostomy. I now appreciate being able to do things, so I've been hiking and kayaking since the ostomy, things I'd never done before.

There really is no way to describe how different life is, except to say that my life now is incredibly ordinary and boring. No one would ever know I'm different in any way. Sometimes I meet new people and think, "if they only knew..."

Everyone has different experiences with this, but for me, for my husband nad the rest of my family, this was the best decision. We don't worry about health stuff any more, or where bathrooms are. We just live. And that was what made the decision for me - I was spending more time working around my pouch than living my life. That was not okay with me. THis is much better and I've never regretted the decision.

Please don't hesitate to contact me with ANY questions.

Hi there,

Firstly, Porsh, I can sympathize with what you went thru, and I hope you are feeling better now. In developing an allergy to pain meds, I have had the same issue - now every time I go to the hospital for one thing or another I need to get loaded up on benedryl so I don't become "one big itch"!! Also my ilio is also pointed downwards, but once I got the right supplies and mastered the use of an eakin seal, I have had no issues.

Just also a quick note to Tarynnjosey, I opted for a perm ilio / jpouch disconnect (I still have it in) 10 weeks ago after dealing with UC for 8 years and a dysfunctional J-Pouch for 14 months. It was the best decision I have ever made. I truly believe that I have gotten my life back, after all this time and I think it is amazing. I can take walks, shop, go to the movies, hang out with friends, go out for dinner - all with no problems, no meds and hardly any restrictions. I honestly hardly even think about the bag anymore.
It's funny because I talked to my Dad today, who has spent the past 8 years beating up on me "for doing nothing but sitting around the house and going to work" - and he said that now I run around too much and the only way he can find me is on my cell!!
Going for a perm is not for everyone, but it was the right decision for me.

Good luck, and if you want to chat, feel free.

Thank you all so much for sharing your stories. Deep down I know that things will be better if I wasn't constantly dealing with a sore bottom or scoping out the closest bathroom. I guess I have to deal with the vain part of me that does not want to deal with an ileostomy again (the 9 months prior to reconnect were only bearable because I knew it would be gone one day). My surgeon did tell me that the end ileostomy is much easier to deal with versus the brooke ileostomy. My other concern is the fact that they now think I have Crohn's... could I have the pouch removed and then the dreaded disease would just move on to another part of my gi tract? I have an appointment with my gastro Dr in 2 weeks and my surgeon on Feb 2. I guess I will be doing some soul searching from now to then

Hi Terynn, just read your post, I also am now considering going back to the illeostomy after18 years on J pouch. Sick of pouchitis and Flagyl, the costs of meds and everything else, especially the pain. When I had UC I was on the bag for 9 or 10 months, and although it was a pain in the butt(haha), there was no physical pain, absolutely none, but it was very watery. You mention an end ileostomy is easier to look after than a brooke ileostomy, do you mind explaining the difference in them, is the brooke the looped ileostomy? Therefore more watery? Thanks for your help and hope you get everything worked out soon! Heather

Dear hever...Thanks for your input. My surgeon is the one who told me that the end ileostomy was easier to manage then the Brooke or Loop ileostomy. He said that it is smaller and doesn't have the small stint holding it up and out. I am still going back and forth with my decision. I always have several good days and think...NO I can do this! But then one BAAADDD day will come and I am praying for it to end and ready to call my surgeon! I know that the time will come when the choice will be easier, but for now I feel that I am young and still like to wear a two piece bathing suit!! Stupid reason...I know, but I am being honest!! The pills and bottom irritation often get to me and maybe I will put my vanity aside sooner than later...but it is good to hear so many people say that it was a good decision that they don't regret!

Tarynn - in order to help you make a decision why don't you do a surgeon/ostomy nurse visit and see if you can have the end ileostomy placed fairly low. I don't know if that's possible but if it is, you could still wear those two-piece suits.

PM Jill because she does everything - including the bathing suit thing. I think I recall that she wears a one-piece system (appliance, not suit) when she's swimming and she says no one ever notices a thing.

And of course you can always do the tankini thing which is sort of two-piece. Or.... you can do a thong suit with a high front and you KNOW no one will be looking at the front side.

Good luck with the decision-making. And I know it's not an easy thing to decide.

kathy

I can tell you that having a loop compared to having an 'end' is, to me, the difference between night and day. (I have to explain that I don't have a true end, it is a little higher then would be typical)
With the loop my output was mostly just fluid, and had to empty up to 10-12 times per day. With the end, it is alot easier and I am down to emptying 4-5 times per day, which I am told will lessen even more with time, the output is thicker, and therefore much easier to deal with.
With the end I change my assembly less frequesntly (every 5-6 days). I am comfy wearing skirts, jeans... just about anything.
Severls companies make one piece swimmers bags that are small and inconspicuous. I know ppl who wear those without an issue.