Hubby had surgery Monday

I don't post much, but I read a lot, and find lots of good info here that I share with my hubby. Sometimes it's helpful info, sometimes it's just nice to know that we're not the only one's going through all the junk that comes with UC and the meds!

Anyway, after battling an almost constant flare for nearly a year, his doc recommended surgery. On Monday he had his colon removed at UCSF, and is doing very well! The surgeon planned to remove the colon and set up the jpouch, but since hubby's been on the pred for so long, and still at 30mg, the doc decided to just remove the colon, set up the ileostomy of course, and wait a few months for him to heal and drop the extra pounds he's acquired from all the extra snacking while on the pred!

The morning after surgery (Tues) he was still in pain, but not nearly as much as the night before. He was able to get up and go for a short walk that first morning, and aside from being tired and some pain from he surgery, he felt pretty good. On Wednesday the doctor ordered him back to a clear liquid diet, and he tolerated it with no problems. He walked some more, and with the addition of the liquid diet his output increased and everything seems to be working well. Today is Thursday and the doctor has moved him to a full liquid diet, so he got some hot cereal and yogurt for breakfast. He said it felt weird and almost painful as the cereal moved through, but it was only temporary and he's doing well. Pain meds have been decreased, IV fluids have been stopped, and the doctor said we might get to go home tomorrow!

So far so good - it's been so nice for him to be free of the UC pain that has plagued him for so long, and to know that the pain he feels now from the surgery is only temporary and will heal! Our goal now is to get home, get healed and taper off the prednisone, which the doc said would take about 5 weeks. As he gets better I'm hoping we'll be able to be more active, which will help him to drop the extra pounds, and in a few months we'll be back for the jpouch surgery.

I've read so many varying accounts of people's experiences with surgery, and I think it helped us to be prepared for what to expect. I hope our experience might be helpful for anyone who is considering surgery as well. Surgery certainly wasn't how we wanted this to go, but life has been pretty chaotic for the past year with his cranky colon dictating where and when we go places, kept him off work all that time, and basically made life miserable, especially for him. I am so gthankfl for the option of surgery, and for a good hospital and a great surgeon here at UCSF - we have been very pleased with the whole staff here - as far as hospital stays go, this one has been very pleasant compared to some.

If anyone has any questions about our experience, I'd be happy to answer them as best I can - just ask!

Thanks quincy! He did say that his colon was inflamed, and the resident who assisted with the surgery took some picutres of his colon after it was out - he said he would email them to us, but we don't have them yet. He did show them to us and showed places where near the upper end you could see healthy 'folds' and near the lower end it was all smooth, signs of damage from the flares. If we ever do get them, maybe I'll post them.

He also said that he left the rectum, and it was inflamed as well, but that it usually goes down on it's own when there's nothing passing through it any longer. If it is a problem, he said it's easily treatable with suppositories. So far it's not bugging him at all though. :)

I will keep you posted!

Rhubarb,

Glad to hear your husband is doing well after surgery. How is he dealing with the ostomy? I know for myself it took me awhile before I could get accustomed to it. If you have any post surgery questions you can go to the ostomy boards and there are a lot of people that can help. There are a couple things doctors don't tell you to expect after surgery that are completely normal, but can send the patient in a tizzy if not prepared. Any questions you have, feel free to ask.

All my best to your husband. He is in good hands, the CR surgeons at UCSF are top knotch!

Sue

"He also said that he left the rectum, and it was inflamed as well, but that it usually goes down on it's own when there's nothing passing through it any longer. If it is a problem, he said it's easily treatable with suppositories. So far it's not bugging him at all though. :)"


That's great to hear he's doing well. My husband and I are almost at your point and are looking into surgeons for the surgery. Did you surgeon or GI try to talk you out of getting the surgery because he had colitis in his rectum as well? Ours is trying to tell us that the J-pouch isn't an option.

Best wishes to your husband and well done to you too for being such a supportive wife.
Marty

Rhubarb, glad to hear your husband is getting better. Hope he keeps feeling a bit better each day! Keep us posted on how he is doing and let him know we are thinking about him.

I think laying around can make anyone hurt. And the more he can get up and move around, the more it will help that gas pass.

Have you visited the j-pouch site? They have all sorts of information about the procedure and recovery, adapting to life without a colon, etc. You may want to approach their message boards cautiously; just as here, the people who are there posting are the ones having problems. The majority of people are out living their lives and dont' need the support board. Here's the link"

http://www.j-pouch.org/

Thanks Judy and Sue. I have been meaning to check out the jpouch.org boards, but just hadn't made my way there yet! I will definitely do some reading there as well. Sometimes it's just nice to know that whatever you (or hubby in this case) is going through has been experienced by someone else, and you're not alone.

He had been walking quite a bit at the hospital - the resident who assisted with the surgery was surprised that hubby had been out of bed and down the hall by 9am the day after surgery. Now that he's home, the pressure to walk in order to get out of the hospital isn't there, so I am trying to get him out the door for a walk today! Our weather is gorgeous, so no excuses!

As for food, the dang prednisone still keeps him very interested in it - he's hungry all the time. But the tastes being off bugs him...bugs him, but doesn't stop him from eating!

Thanks for the info - I'll keep posting progress (or questions) here.

Thanks princesscolon - it might be the same thing...he hasn't said anything about nightmares for the past few nights, but he says things are still off as far as taste. Hasn't slowed him down in eating though! LOL It's only been a week and half since surgery, and he's supposed to be on a low fiber, low residue diet, but he's been eating pretty well, and so far no problems. He makes me nervous, but he assures me he is chewing everything very well.

Sine we've been home I am seeing great improvements in his mood, how often he's awake, how much energy he has etc. - it's great! I think I'm starting to get my hubby back! He got his staples out yesterday, which made him feel much better - the staples, especially on the largest incision, were starting to irritate his skin and he had red marks around each one. No infection, just irritation! I'm so pleased that he has done so well so far - we had so many terrible experiences and setbacks with the UC over the years - it was always two steps forward, three steps back.

Last night I told him that if it's nice weather tomorrow (now today!), we really need to get out and walk some more and he agreed. He's lost about 5lbs since the surgery, which is great, and he will taper to 15mg on the pred on Saturday. I will be sooooooo glad when he's DONE with prednisone!

Just wanted to give an update - thanks for the support, answers etc - as many have said, this forum is a God-send! I hope our experience with surgery might be helpful for those who might be considering going that route. So far so good, and I will continue to post progress (and setbacks if they happen, but I'm really hoping I won't have any to report!).

Grrrr....well, the past two days have not been so good. I swear, it's like the ghost of ulcerative colitis is haunting us - hubby is wiped out again, has pain after eating, sleeps 10 hours, wakes up, eats, takes meds, goes right back to sleep again. He has once again become a permanent fixture on the sofa. :(

I have no idea what to attribute this to - he was doing so well, had more energy, feeling better, and now he's back to being so tired and feeling yucky - he had to skip his uncle's funeral yesterday, and we just canceled the plans we had for today as well.

All I can figure is it's either -
a) part of the healing process and adjustment to an altered digestive system
b) he felt so good he started adding foods he shouldn't have - or just too much too soon - prednisone still has him hungry all the time
c) lack of walking - the weather has been bad for the past few days, plus he felt yucky
d) tapering the prednisone - he's been on 20mg for a week after months of 35mg

I feel like such a whiner today - but I am SO SICK OF THIS! I want my husband back, I know he wants his life back! I know and expected healing to take time, but after such a great start, having a few days that are so much like 'the old days' is really, really frustrating.

Blah - I just needed to vent. I know no one understands like you guys - those of you who have been through this and the spouses/family members who love and care for a loved one. It just makes me feel so helpless and frustrated sometimes.

Thanks for reading my rant.

It sounds like he is making quick progress. Thanks for sharing your accounts as it makes it seem like not such a big deal as one would think. I would try to be really patient with him and not place too much expectation for things to get back to normal too quickly. He has been battling a major disease and just went through a major surgery plus he is still on some heavy duty drugs (eg Pred). Give him time to heal and be patient; he needs time to heal on many levels so rest is a most important "activity" to get him to the next level of wellness. It sounds like you are a great supporter and he's very lucky to have you by his side through this. Much luck for continued progress through this recovery.