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Reversal in 2 Weeks!!

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Posted 8/2/2011 8:01 PM (GMT 0)

Hi All,

 

First off wanted to say you guys are great. I am often a lurker on this forum as well as the UC forum but have decided to post because I had some questions/am up for any advice!

 

I had my colon removed as the first step of the J Pouch surgery May 3 2011 and am going in for my second surgery on August 16th 2011. I am excited! However, just some questions. Unlike a lot of the people who get the J Pouch surgery I did not have the pouch constructed in the first surgery because my surgeon said that my bowel was too diseased, so this will happen in my second surgery as well as reversal of my ostomy. I still am getting the surgery in 2 stages, just two major surgeries instead of the one major and the less major takedown. Does that make sense?

 

Question 1) I was wondering if anybody had any experiences with this? What is the recovery like? Should I expect to be in the hospital longer?

 

Question 2) I am entering my 4th year of university and classes start 3 weeks post op for me. Should I be able to successfully return to school and not have to worry about bathrooms/urgency? Don't get me wrong I know all the locations, but it is a worry of mine!

 

Question 3) How much weight should I expect to lose after surgery?

 

Your responses would be greatly appreciated!

 

You are all wonderful!!

!
Posted 8/3/2011 12:57 AM (GMT 0)
My situation was different, in that I had a volvulous (twisting of the sigmoid colon) that resulted in the surgeons having to take 18 inches of it out. I had a temporary ostomy for about 2-1/2 months. I would have had the reversal done sooner, but I had a couple of unfortunate setbacks, one of which was dehydration, which resulted in a blockage. In taking care of that, I had an NG tube and my guess is, when they inserted the tube, I ended up aspirating some kind of material into one of my lungs, which caused me to get pneumonia.

When I went in for the reversal, I weighed 189 pounds. When I got out, I was about 175. I was on a liquid diet for three days (including the day before surgery). One thing to expect is a LOT of gas. I was pretty well medicated the first day and night, but the second night after surgery, I couldn't sleep because of the gas, so I did lots and lots of walking. I finally passed some gas about 4 in the morning, then started with bowel movements at about 6 in the morning. If my memory serves me right (the reversal was just a little over 12 months ago), I had 15 bowel movements by the time 6PM rolled around. My surgeon finally took pity on me and let me have some medication to reduce the frequency.

The pain from the surgery was pretty much a non-issue from the very start. If I got in the wrong position while I still had stitches, certainly it would hurt, but nothing major. I didn't have to take any kind of meds for the pain. I kept the walking up until I was cleared to go back to the gym.

Good luck with the reversal and I hope this gives you some of the information you wanted.
Posted 8/3/2011 1:50 AM (GMT 0)
I also have my take down in two weeks Aug 17th! I am so happy to get this temp illestomy removed--i've had nothing but problems with leaks and burning but I'm also anxious/nervous of what is to come. My surgeon said to expect to be in the hospital 3 to 4 days and said everyone is different on their recovery. He did say to expect frequent bowel movements and gas. I've asked for four weeks off from work so hopefully that will be enough time to recover somewhat.

I'm interested as well on people's experiences with the reversal and any suggestions.

We should be recovering right around the same time so I'll say a prayer for you/us and wish you a speedy recovery.



:-)
Posted 8/3/2011 11:38 AM (GMT 0)
Sagal: Be ready to walk, walk, walk and walk, because you do get quite a bit of gas and that's one of the best ways to get rid of that gas.
Posted 8/3/2011 12:33 PM (GMT 0)
I have met a lot of 2 and 3 step j-pouch patients and they all say that the surgery when the pouch is created is the hardest. I don't say that to scare you, just to let you know what to expect cool

Yes, walking is your friend, so be ready to walk a lot!

Recovery is always individual so you will really have to wait and see how you feel. You are going to have to experiment again with foods and how they do with you for a while...so unfortunately, you may have to know where the bathrooms are for a little while.

Have you asked your question at www.j-pouch.org? There may be more folks there that have had a two step procedure like yours :-)

Good Luck!
Posted 8/3/2011 8:27 PM (GMT 0)
Hey!

Congrats on your reversal surgery! I also had my J-pouch surgery on May 3!! I had emergency surgery last October, so I went through the 3 steps as well. I had my reversal last week. Just got home from the hospital yesterday!

For this final surgery, I was in the hospital for 5 days. I had been told 3-4 days, but some patients have been in for two weeks (although that's rare). You are young, so I would expect you would be out of the hospital quickly. I would also assume that you'll recovery quickly. How was your recovery for the j-pouch? I had some complications following the May 3 surgery, but still seemed to recover within the 7-8 week estimate.

My time in the hospital for the reversal was decent. I had surgery on Thursday and began liquids on Sunday, then quickly transitioned into soft foods. I didn't really have problems. I had a lot of gas pain, so like everyone has mentioned, WALK WALK WALK. Some people have difficulty having bm's right after surgery, but that wasn't a problem for me. My ileostomy was closed loosely with staples, so I keep gauze on it for the draining. I had a lot of nausea in the hospital. But after all I've been through, this surgery was the easiest. I'm going to the bathroom a lot now (surgery was 6 days ago). I thought I became constipated before leaving the hospital, but now I can tell it's just severe rectal pain so I have a call into the hospital to see what I should do.

I'm not far enough in the recovery process to be able to tell you about bathroom and urgency by the time you start school. However, I have a feeling that it will still be an issue. I've gone through that with college (had to withdraw from school last fall when I had my emergency surgery - then graduated last spring). But I think bathrooms/urgency will be a problem for a while. My doctor estimated that everything should be more normal in about 6 months and should be almost completely normal in a year. I'm sure different doctors tell you differen't things.

I don't know about weight either. I lost about 10 pounds with my j-pouch surgery and didn't really gain much of it back. I'm underweight, but can't seem to put on the weight. I have to slow down my output so the calories can stay in my body longer. It seems as though I've lost a little weight, but I don't have much to lose.

Good luck with surgery and with school!!! Let us know how everything goes!

Posted 8/3/2011 9:12 PM (GMT 0)
I know you're excited and a bit anxious too....best of luck and I hope it all goes well for you. It is best to be as prepared as possible so in the event something is amiss you are somewhat prepared too. But hopefully it will go well.

Hubby had hoped for shot at it but it wasn't meant to be for a lot of reasons. He/we are doing quite well and have adjusted to the permanency of it, but I do wonder for him from time to time if he was able to have the pouch created how it might have gone for him.
Posted 8/4/2011 3:04 PM (GMT 0)
Thank you for all of your responses! I will no doubt remember to WALK, as that seems to be the key to a quick recovery and less gas pain.

Sagal: It is crazy that your reversal is so close to mine. I will be thinking about you the day after my surgery. Best of luck with it. We should talk while we are recovering. It would be a good support! : )

CtrySinger: Again, kinda neat that you had your surgery on May 3rd as well! I appreciate the honesty of your answers letting me know that urgency will probably be an issue. I had pretty high anxiety when it came to bathrooms before, so I am kind of expecting to get this back after surgery. I did recover quickly from my first surgery, and I am going into this surgery healthier so I hope that will come into play!

Thank you everybody again for sharing your advice and experiences. I will let you all know how it goes!
Posted 8/5/2011 2:02 AM (GMT 0)

Hi. My daughter, who goes by ElddireMsihT on here, is having her reversal on August 24 so she'll have to check in with you all to see how things are going. She had to leave her freshman year of college 7 weeks into the school year last fall because of a bad UC flare. She is going thru 3 step surgery. Her colon was removed in January and her j-pouch was created on April 20. She did well with the first surgery though had lots of skin allergies to various ostomy products. She had a very rough time recovering after the second surgery and had to be readmitted to the hospital a week later due to failure to thrive that included nausea and total loss of appetite. We were told that the formation of the j-pouch is the tougher of the surgeries. She suffered from malnutrition and a couple of weeks after the second surgery her abdominal incision came open. We are still dealing with trying to get that sucker to heal up. It took quite a bit to get her appetite to come back and she went from 93 pounds before the second surgery to 79 pounds. It took about 3 months to get her appetite and strength back and her reversal was pushed back an extra month due to that.Thankfully, she is now feeling well, eating great, going for long walks, and putting on weight. She's now up to about 86 pounds and we hope to get her close to 90 before take-down. I'm hoping she does a lot better with the take-down surgery than she did with the second one. She is not planning to return to college until B term in October, or C term in January depending on how she is doing.

I'm not trying to scare you because everyone heals differently but make sure not to return to college until you feel capable. You can always sit out a semester. It's better to go back strong and healed than to try to juggle classes, college diet, and all that goes with it while struggling with health issues. Good luck to you! I hope it all goes well and that you can move forward. We'll be thinking of you - keep everyone posted.

~Lynn

Posted 8/5/2011 2:49 PM (GMT 0)
    Congratulations on your upcoming reversal.  Mine is scheduled for late September.  My surgery is just the opposite of yours.  I had the j-pouch created during the first surgery, so I think we will be going through the same thing just in opposite steps.  The first four weeks were very rough and after that I started feeling a lot better, although I did have a complication which extended my recovery.  I lost about 13 pounds during my hospital stay.

 

Posted 8/5/2011 4:11 PM (GMT 0)
Rachels Mom: It always breaks my heart to see young people going through such a horrible time. I am sorry that your daughter had to leave university due to her UC flare. I, myself was officially diagnosed in my second year of university (18 y/o) and have spent the majority of my post secondary education fighting this disease. I am stubborn and a classic over achiever, so returning to school is a no brainer. I have accommodations as I am registered as a student with a disability, so I have had the ability to tailor my schedule to my needs as well as receive an accessible parking pass just in case I have any urgency.

I am also going back to living in a house with a couple of my best friends who are great for support and are in the same program as me and always offer any help I need if I miss a lecture or need a hand finishing an assignment. I hope that your daughter is able to return to school, as it is such a great experience.

I have heard that the surgery where they create the j pouch is the most difficult and I will definitely keep this in mind going in. Although I did recover quickly last time, I need to keep a level head and remind myself I am not superwoman.

I will defiantly try and keep you updated on how this second surgery goes and will be thinking about you and your daughter at the end of August. Where abouts is she getting her surgery done? I am having mine at Mount Sinai Hospital in Toronto.

Crimsonfury: Thanks for sharing your experiences! Four weeks is not a bad timeline! Have you started counting down the days til your next surgery? I have! Today it is 12! : )
Posted 8/6/2011 10:31 PM (GMT 0)

Glad to hear you are using the disability accomodations - we found it so helpful. Rachel was able to reduce her course load because of disability status which was really helpful. They bent over backwards to help her make it through the 7 week term. When she returns they will continue to make accomodations for her. She was diagnosed in her freshman year of high school when she was 14 and the disease was pretty brutal. She missed a lot of school and it was a tough time. Like you, she's very driven and it has been hard to be at home. She did manage to do an online class this summer which was very satisfying. She's having her surgeries at the Cleveland Clinic, which is a bit more than a 5 hour drive for us but worth it for the experience they have with j-pouches.

Will be rooting for you! Hope all goes very well - do keep us posted.

~Lynn

Posted 8/7/2011 9:03 AM (GMT 0)
Hi,

I'm totally excited for you, now it's only go to sleep nine more times and then you'll be re-connected and bag-free.

If I understand right, you had the collectomy and now you're pouch will be formed and taken down in the same operation? You must be really fit! My colon was removed in April, and I have to wait six months for forming the pouch in the second operation because there was to much prednison in my system at the time. Then my doctor wants to allow four weeks after pouch formation before  take down, which I thought was quick because from all my reading around, there's usually three months in between formation and take-down.

What I'm still not clear on is if recovery from pouch formation is going to be the same as after the collectomy. I had 8 days in the hospital although I could have gone home on day 7, and then another 8 weeks at home. (I'm in Germany, and here they keep you in the hospital until they can rule out any possible complication happening).

My doctor said I shoudl reckon with 2 weeks in the hospital, 2 weeks at home and then then the take-down. I know this sounds silly, but I dont want to be away from work that long, however, I've also found that the things I've worried about the most regarding the entire process turned out not to be a problem at all.

Please do let us know how it goes and how you're doing.

All the best,

Posted 8/7/2011 5:59 PM (GMT 0)
1.) well, me I was out on day 3 post take down, but given the nature of your surgery I'd say 5 days is more likely. That's how long I was in after my J-pouch formation. But don't be surprised if its up to a week either.

2.)I had my take down 8 weeks ago and based on what I experience from my second and third surgeries, 3 weeks may not be enough time to recover to go through a whole class, but you may be able to get by. Here's my suggestion. talk to each professor on the first day of class and let them know you had surgery 3 weeks ago. You don't need to go into details if you aren't comfortable with it. Just tell them that you are in a position to need to use the restroom frequently because of the nature of the surgery, and so you may need to leave class to go, but it will get better with time, and shouldn't affect your ability to preform in the class. I've learned from lots of bad experience that you just need to be up front with your issues when it comes to school. If in doubt (like you have a butt for a professor like i did) go to the office of disabilities since you are a registered student already, with a letter from your surgeon or GI doctor explaining that you may need extra bathroom trips because of surgery. I did this at two colleges and had no trouble with any professors, but at my at my first college (I have 2 degrees) I didn't and I had a hell of a time with one particular professor. He failed me for things when i was in the hospital saying it wasn't an excuse and crap like that, so better to be safe than sorry. My experience with the pouch straight out of the hospital was the first 3 weeks were the hardest, but since you are also having yours formed at the same time, it may be a little longer. However, when sitting down, I was able to hold my bowels for 3-4 hours like 3 days after surgery. Its walking and standing that made me feel like I needed to go. SOOOOO, Provided you are sitting in your classes, you probably will be fine most of the time, but it doesn't hurt to let your profs know that you may need to dash out of class.

3.) I lost only 5 pounds from the liquid diet in the hospital after both my second and 3rd surgeries and promptly put it back on once I was eating again. Weight loss wasn't an issue for me with any of my surgeries really, just my flares. I actually would have liked to lose more weight since I am 30 pounds over weight so I was kinda bummed about that. In general though I've read that after take downs and such weight loss is minimal and you'll gain it back quickly with regular eating.

Good luck with both your surgeries and your last year of college!!
Posted 8/30/2011 6:15 PM (GMT 0)
This website is chalked full of info on reversals that may help a lot.

www.freewebs.com/ileostomyreversalsurgery
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