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Reversal complete - whew!

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Posted 5/16/2008 1:10 AM (GMT 0)
Well, I did it. I went in for my reversal last Friday the 9th and came home yesterday. The hospital stay went okay except that I had a reaction to the general anesthesia and was sick for a few days. Why do you suppose that happens one time and not another? Anyway, so far my experience doesn't have me jumping for joy, but it's early and I'm being impatient (and feeling a little down at the moment - sorry). The plus sides - the pain from the surgery is a lot less than the first time. The incision and eventual scar is relatively small -- my surgeon cut around the ostomy, pulled out the loop, stapled it together, shaved off the top (excess I guess?) and then dropped it back in and closed with "purse string" sutures - imagine pulling a drawstring closed. Oops - was that TMI? Sorry. Anyway, it looks like a bullethole which is pretty minimal after taking care of my little ostomy friend for the last 6 months.  Oh - and the bag is gone! That's a pretty big plus!!  The downside is the dreaded diarrhea is back and I've been living in the bathroom again. No painful explosions or painful colon like with the UC, just lots of "butt pee." Very sore and tired bottom already.  I knew to expect this, it's just depressing after being away from it for awhile. And as a result, I'm afraid of food again. I know I shouldn't be, but I am. The "scary" feelings came back like they never left. I want to go to my son's DARE graduation tomorrow and I'm afraid to leave the bathroom. So that's where I am. It's probably not as negative as it feels, and I don't regret it - yet. I just need to find a happy place and be patient. It's been less than a week!   -Laura
Posted 5/16/2008 4:07 AM (GMT 0)
Laura,
Congratulations on getting through surgery! :-) You are only one week post-op, so I wouldn't make any plans to go anywhere. Maybe someone could video your son's DARE graduation, and you could watch it at home.

Everything will get better. It just takes time. Remember, you are UC-free, so it's not the disease causing the frequent bathroom trips. It's just your intestines having to get used to working that way again.

Some foods that might help bulk things up are bananas, peanut butter, bread, rice, and potatoes. Please don't be afraid to eat. Just stay home, take your pain meds, and rest. It will take at least a month before you get your full energy back. Please keep us posted on how you're doing.

Take good care,
Cecilia
Posted 5/16/2008 11:57 AM (GMT 0)
Cece - Thank you so much for your kind and encouraging words. Would you believe I cried?? I feel so goofy! I know it will get better, I just feel like I've been sick forever. I want my life back! I will definitely try your suggestions at bulk-up foods. I already sent my husband to the store to get some bananas. Yum - I avoided those with the bag because they were TOO bulky. :-)   Anyway, thanks again. You're a wonderful person to care so much for people on this site. You're a Blessing to so many!
Posted 5/16/2008 1:07 PM (GMT 0)
You are going to need to work on patience to get through this part of recovery. I found reversal surgery/adaption far more difficult than the colectomy. Things that can help you are bulking up and slowing down your frequency. Along with the foods mentioned you might want to use fiber to supplement. Either Metamucil powder or crackers before each meal. If you use the powder be sure to only mix with 1/2 cup of water. Do not follow directions on label. Also you may want to purchase a tube of calmoseptine for your butt. You can buy it wherever you purchased ostomy supplies or you can order it online at www.calmoseptineointment.com It's the world's best angry butt soother. Keep a food journal to see how foods affect you but remember if something doesn't work too well try it again in 2 weeks. Don't feel you have to limit you diet for life, most of these adjustments just take time. It took my body about 6 months before I could comfortably eat fresh fruits and vegetables. Today that is about 90% of my daily diet. Be sure to get exercise in daily. Start slowly but do walk and increase that.

Recovery is two steps forward one step backward for about the first year. Have patience, rest when you need to but start enjoying life again.

Sue
Posted 5/16/2008 4:11 PM (GMT 0)
I'm glad to hear things were successful and you're on the road to recovery, Laura! I go in for step 2 of 3 for my j pounch in two weeks. So, I have been following you very closely!
I have a question for you, if you don't mind! How is the urgency? I know/ have been told that after reversal frequency is back up and diarrhea is back, but can you comtrol it? Are there lots of "accidents"?
I am looking forward to hearing more of your story, so keep us posted. :)
Posted 5/17/2008 4:46 AM (GMT 0)

Hi Sue,

Just read your reply and must say you did really well after 6 months from rejoin.  It is 12 months in June since I had my bag removed and still have hit and miss BMs it seems to go quite good for a couple of days, then whammy! I'm running back and forward to the loo 7 - 8 times withing about 4 hours, then end up with a really sore butt.  I keep looking on the positive side though and know that it can't go on forever.  (hopefully that is) eyes    Another thing I don't enjoy is the bad odour from wind that sneaks out just before I begin having a run of BMs, it can get really embarrassing if I don't make it outdoors in time.

Good health and much strength to all of you.

This is a wonderful way to find others in the same or similar situations.

Cheers

Annie in Oz

Posted 5/17/2008 9:19 AM (GMT 0)
Thanks, Laura. I'm glad we have this site where we can encourage one another.

I recently had surgery for a small bowel obstruction caused by scar tissue, and you all helped me get through it. Peggy posted that I was in the hospital and then read me your messages over the phone. They were so sweet that I cried, too. You've been through a lot, and sometimes a good cry just makes you feel better. :-)

Hang in there, it will get better!

Cecilia
Posted 5/17/2008 2:48 PM (GMT 0)

Cece - I'm so sorry you had the trouble with the bowel obstruction. I know you were doing so well. I hope you are feeling better now. And Peggy has been a huge help to so many people and then to have her husband dx'd with ALS - where's the justice in that?? It just seems like we can barely catch our breath before another wave comes to knock us down. It's wonderful to have a place to come where people can listen, understand, help, sympathize, commiserate, etc. I've browsed some other forums, but the people on this one are real standouts! yeah

So yesterday I found the courage to eat a little more substantially. Over the course of the day I had 1/2 sandwich (turkey on white w/ mayo), 1/2 banana, some pasta and potatoes. An Atkins Diet killjoy!! Anyway, things thickened up a bit and even quieted down for a 1.5 - 2 hr period during the day. But there is still a lot of very loose stool, some pain and incontinence. I also pushed myself a little hard yesterday getting out and about. I'm going to try and rest a little more and see how that does.

Sue - I found the calmoseptine ointment and am using it. Thatnks for the tip! It definitely feels a little better and if the D would clear up for a day, I'll bet the sore bottom would too. I wanted to ask you about gas. There seems to be a lot of gas involved with the jpouch and it's very painful. Sometimes it's just gas and sometimes it's ahead of a bm. I can't tell which and it's driving me crazy! I'm going to keep the Always (pads) people in business for a long time at this rate.

SfgJo - frequency and diarrhea are back with a vengence and I'm sorry to say the control has been difficult. I've been to the bathroom 3x since starting this post and had to change my pad twice. That said, it's not explosive or bloody like with the active UC and part of the problem is this gas thing. Also, like Suebear always says, it's different for everyone. My sphincters are in good shape so I'm not sure what the problem is. I have a followup next week and believe me, it's at the top of my list of q's. I think it's just hard trying to fool your small intestine into believing it's a large intestine.

Posted 5/17/2008 11:28 PM (GMT 0)
Hi Laura:

Thanks for keeping us all posted on your progress. I'm up to bat for my reversal on the 28th. My surgeon won't commit to the size of the incision he will need to make. I had problems with fistulas in the past plus he said he may need to adress some potential hernia issues so I guess I'm looking at a much bigger incision than yours even though I also have a loop ileo.

Since my ileo was not the result of UC and/or Chron's, I don't know if that means my recovery will be less challenging. However, I have had the ileostomy for 3 years, so my large intestine (I have about 60% left) may take a while to "wake-up".

I also second your thoughts regarding Cecilia & Peggy. They don't know what a tremendous help they have been to me. I think about and pray for Peggy and her husband every day.

Here's hoping that the Big Guy is watching outb for us all!

Richard
Posted 5/18/2008 1:55 AM (GMT 0)

Laura,

What you are experiencing is normal for recovery.  In time your gas will subside and you will better predict when it's just gas and when you need to empty your pouch.  Hang in there.

Sue

Posted 5/20/2008 3:25 AM (GMT 0)
Just a quick update. First let me say THANKS for all of your support. I'm having a much harder time with this than I did with the colectomy and have been getting depressed. I think because it's supposed to be the "end of the road" of this crazy journey and I want it to be over so I can move forward.  But it is what it is and what it is, is hard!  So yesterday I experienced what I believe to be my first, and hopefully last, blockage. I've been working so hard to bulk up my stool that I think I overdid it or something. I hadn't been using the bathroom much and was having horrible gas pains that just kept getting worse and more frequent as the day went on until finally I was vomiting from the pain. Fortunately that seemed to loosen something up and I was able to go to the bathroom a couple of times and then I felt better. I still got up several times during the night, but at least there was no more pain. Of course, I was afraid to eat again today, but I'm trying to deal with that. Also, still having control problems about 1/2 the time. I know this gets better - right? I need to find the patience this is going to take. It can't be helping to get upset. Looking forward to my followup appt. on Wednesday. Maybe Xanax....?

Richard - I'm excited for both you and sfgiantsjo. Despite the troubles I'm experiencing, I still think this is an exciting option for those who qualify and are willing to give it a shot. Are you also getting a jpouch? The statistics are really good that it will be successful or at least offer a better quality of life. I want to say it's 95% successful which are great odds.  I can't wait to hear about your experiences as well.  I hope it goes easier for you, but most importantly will be the eventual outcome. You, especially, have been thru so much. You deserve to have a good turn of events - as do all of us. :-)

Posted 5/20/2008 4:40 AM (GMT 0)
I just thought this post needed a positive side to the reversal. I had mine on April 14th and am already back at work and finally feeling energy that I didn't have while I had the loop! My hair is growing back and I've been able to add a much needed 10 lbs, food is not running right through me like it did before. The only complaint I have is the dreaded butt burn which I am trying to control with the calmoseptine, water bottle for rinsing, softest toilet paper and soaking in a tub when it's really bad! I am keeping a food diary but still can't figure out which food could be causing it. It's not as good as when I was in remission (which I was most of the 17 years) but I am slowly getting used to my "new normal". I always have gas at the end of a bowel movement and boy is it loud, so I will fear public toilets! And I do get up 1-2 times in the middle of the night but it's usually quick and I do eat late at night (sometimes right before I go to bed).

Anyway, I just want to wish those who are having upcoming surgery well and hope that things get better for those who are having a difficult time after their reversals. And also for any who have had recent surgery to adjusting to your "new normal" whatever the case may be.
Posted 5/20/2008 5:27 PM (GMT 0)
EEk! I am still excited about my jpouch, but scared, too. For those that have dealt with it for awhile, does the gas calm down?
Posted 5/20/2008 7:07 PM (GMT 0)
Yes, the gas is temporary and is a imbalance of bacteria. It can be extremely painful and the best treatment for it is walking. OTC gas reducers, with the exception of beano, work on stomach gas and they won't be successful. My surgeon was opposed to the OTC products as he says they stick to the intestine walls. Walking is what he recommended. Also until you are a few weeks out of surgery eliminate all carbonated beverages, sugars, and other high gas producing foods. Keep a food diary to find foods that might cause you problems and start taking probiotics. I take a probiotic daily.

Sue
Posted 5/21/2008 8:47 PM (GMT 0)

Good news! There's a reason I've been having so much trouble. I went for my post-op followup today and told my surgeon what's been going on and he pinpointed it immediately. It turns out I have a stricture where the pouch is joined to the rectum. It's supposed to be open about 2.5cm and mine is only around 1cm. It's preventing the pouch from emptying the way it's supposed to and causing the majority of the problems I've been having. I go in for an outpatient procedure tomorrow so he can dialate the affected area and then my pouch should start acting the way it's supposed to. YEA!!! Who would've thought I would be so happy about a complication? yeah

BTW - for those of you who are in the bullpen for your reversals (Richard, Jo and others), my dr. said the reason this happened to me was because the reversals are generally done around 3 months after the jpouch is created, but I got pneumonia about that time and had to wait about 6 months and it closed up over the extra time from non-use. He said that only happens about 30% of the time in those cases.  So the lesson learned here is don't let your kid give you the flu! :-)

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