Requesting advice about surgery

This message will be my first post, though I've been reading the posts on here for months. I have had UC for the past 6 years and after the typical struggle that UC'ers face, I've decided to do the J-Pouch surgery. I'm scheduled for the first one in June and am just trying to stay as healthy as I can until then. I have never met anyone with either Crohns or UC, so I have never had the opportunity to talk to anyone about the surgery or the disease, etc. I like my surgeon (I will be having it at UNC-Chapel Hill), and I am confident that the surgery will go as well as it can. I'm not sure what to expect. Can anyone provide some advice? Particularly anything that surprised you...info that they wished they had known before their surgeries.

What is recovery like? How much weight did you lose post surgery? How long until you feel better? And this is a silly question, but do you miss your colon? Can you feel that it's gone? Is your abdomen smaller after the surgery? I know that's a strange question, but I've done a lot of yoga, and I'm worried that I will be weirdly aware of my colon's absence:):)

Thanks for your posts throughout the past few months; I'm grateful to have found this forum.

I haven't had my reversal, but I can answer what I have experienced so far.

I have lost 20 pounds since surgery...much needed. I had gained about 35 since using prednisone and have lost 30 pounds sine I've been off of it. I look to see if I can notice it's not there, but can't tell. Just know it's not there because I feel better.

I went back to work part-time after 6 weeks.

I am glad you are confident in your surgeon you need to have one that does a lot of j-pouch surgeries every year because it is such a complex surgery. I think a lot of the problems people have stems from having surgeons who only do a few a year. Mine does them almost weekly.

My only surprise was how hard of a time I had getting used to the temp illeostomy. So many different sizes, brands and types. I now have no issues just in time for my reversal.

Walk, walk, walk. It will help you get better faster. It took me about 6 weeks to feel like myself again.

Pain can be controlled with meds so don't worry about pain.

Good luck and keep us updated!!

I had the three-step surgery and had my takedown in mid-December. I would normally lose maybe 5-7 pounds after each surgery, mainly because I wasn't eating that much but then I would put it back on once I started eating normally again. I think I read somewhere the colon weighs close to four pounds??? So, I should be four pounds lighter - but that's not the case . You won't physically "miss" your colon. I work out frequently but because I've been taking it easy on the abdominal exercises, my stomach is still pretty flabby. My recoveries weren't that bad. There is an adjustment after each surgery, for sure. The bag takes a while to get used to and I'm still getting used to the j-pouch. In the beginning, you'll have to go to the bathroom a lot - and those urges will remind you of your UC days. I still get those - though not nearly as often - but they pass. I just have that uncomfortable feeling for a few seconds. Hoping over time those end as well. I definitely feel better now then when I was flaring. I would rather have a healthy colon than a j-pouch but it has given me a life back. Good luck!

What is recovery like?
I was back to work at eight weeks, but not fully healed until four months because my incision kept opening back up due to a poor reaction to the suture material in my abdominal wall. Once this was fixed though, I healed pretty quickly with the help of a wound vac.


How much weight did you lose post surgery?
I am 5'8 and lost 25 pounds (20% of my body weight) in the hospital due to a UC flare in September. I managed to put 15 pounds back on before my surgery in November. That is where I have stayed since... so I haven't lost any but haven't gained any either. I don't worry about it though because I feel really strong and healthy.

How long until you feel better?
Even though I had surgical pain, I felt immediately better after surgery. Now that I am about 5 months post-op, I feel better than I have in about 6 years. I have sooo much energy and just feel revitalized in general.

And this is a silly question, but do you miss your colon?
I don't miss it at all. It hurt and bled all the time and I am glad my body isn't constantly wasting energy trying to heal it.

Can you feel that it's gone?
Right after surgery, things felt like they were sloshing around in my belly. When I would roll over in bed I swear I could feel everything flop to the other side. I asked my surgeon about it and he said it was quite possible that things were moving around a bit due to the extra space, but that it should go away once things settled. It has, though I still wonder if when I start up jogging again things are going to slosh around:)

Is your abdomen smaller after the surgery?
I wouldn't say it is smaller, but I used to get really bloated with UC and looked like I was 6 months pregnant sometimes. That has gone away and my stomach is nice and flat now.

I know that's a strange question, but I've done a lot of yoga, and I'm worried that I will be weirdly aware of my colon's absence:):)
Again, I think you will get used to its absence once everything settles. So far I haven't noticed anything weird, though I haven't started up most of my sports quite yet.

Things do move around in the early days, but it doesn't hurt just feels weird! I don't miss my colon and I don't feel any different without it...I do have a permanent ileostomy, not a j-pouch. I wish I could say you loose weight when they take it out, but you don't!

How many steps will your surgery be? What meds are you on right now?

Welcome to the forum, too, I am glad you found us...any I bet you have met people with UC/Crohn's but most don't talk about it!!

That is interesting. We should keep in touch..update each other. Are you doing a J-pouch? Do you have to do it in 2 steps? What are you doing until then? I've been trying to meditate and walk and exercise (though, I haven't started doing any). Part of me just wants the day to be here...and isn't it funny, I've started feeling better.

First of all Good Luck. Let us all know how you're doing after the surgery and you are up to it.

Insofar as "feeling better" when my husband made the decision locally in June and due to various logistics with Mayo Clinic, a prostate issue, the surgery was set for mid December. A certain feeling of peace and acceptance I think makes the entire situation a bit different even though he didn't really feel better physically but emotionally he did.

As a precursor to June his pain meds (on pain management) needed to be increased which also played into the decision for surgery.

We are in a bit of a learning curve at the moment but honestly he has not regretted it for one minute the choice to have the surgery. To be out of pain, not living in our bathroom and always needing to know there was a men's room nearby etc. has given him so much freedom now. He is back in control now instead of the UC controlling him and life is one heck of a lot better now without a doubt.

To answer some of your questions, the only thing that surprised me after surgery is that I developed an abcess in my pelvic area about a week afterwards. I guess I shouldn't have been surprised...they do warn you about infection as a complication. I had to have a transgluteal drain (a tube thru my butt cheek) put in to drain the abcess. Problem was it had to stay in for 6 weeks! Looking back on it now, it really wasn't that bad. I just wasn't prepared for any complications. Everything else went really well and the surgery has been a huge success for me. I would do it all over again in a heartbeat.

No, I do not miss my diseased colon at all! You won't feel it's gone. I have to say my stomache has an odd shape now....kind of hard to explain. It's not flat anymore. But that's a small price to pay not to be sick anymore! I lost about 20 pounds after surgery(s) but I have since gained back 12. I love my weight right now so I am trying to maintain it.

Best wishes to you!

 

hey its the last prep you ever have to do!

Sorry...I didn't want to scare anyone with the abcess and drain thing! But it's always good to be aware of these things. I kind of wish I knew about the complications first hand before surgery because when I was going thru it I felt really alone...like I was the only one to have complications. I wish I found these forums before my surgery to comiserate with folks in the same boat. I didn't find the forums until after surgery when I was sitting around re-cooping. It's so nice to know you are not alone.

Bottom line is don't worry about things and go in with a positive attitude. I really believe that helps so much! Even with the complications, the surgery is so worth it!

I'm happy that you're feeling so well 5 months post surgery! I'm sure that I'll face whatever comes, as I have before. It's a different ball game with infection and fever, however...I'll just remind myself what your husband told you...my body is just trying to heal.
I'll keep you all posted...thanks for sharing your experiences.

where in your butt cheek is this drain? How do you sit? I just can't imagine it! I have a big ol butt cheek, seems like a lot to go through to drain the stomach? lol
I'm so paranoid!

Am I getting confused....were the drains in the butt cheeks due to my husband's anus and rectum being removed and everything sewn up internally and externally and those drains were for that purpose???

The tube in the nose goes to the stomach correct? He was on liguids in a couple of days, then very soft food and with the stoma working well the tube in the nose was taken out and he was very happy about that and then the butt drains were not long after that.

His back was thrown out of whack as well due to lying and sitting in an awkward position even after the drains were removed as it was tender and sore. Soft pillows and that inflatable egg crate pillow (called a waffle cushion) really helped. Once he was able to sit more normally it got better but the back was definitely weak and took awhile for his to straighten out. He was careful to be sure it didn't actually go out on him but it was weak.