I'm a chronic, severe, UC Wifey and I have surgery questions (colectomy, ostomy, j pouch, etc.).

My hubby has been suffering with UC for several years. He got his DX shortly after we were married (I think he was DXed mid-2011). It has gotten so bad that he has gotten blood transfusions and we are meeting with a surgeon soon. I've been supportive and he's been strong, but, I'm an obsessive researcher when I'm stressed (and, BOY! Am I ever stressed about this!). I know the surgery can be done in 1, 2, or 3 parts, but, what I'm having a hard time finding out is, what needs to happen to get the 1-part surgery? DH is the sole breadwinner and he's thinking that he's going to be back to work in 2 weeks (is that realistic?!). I know he's going to push himself and, to be honest, I'm afraid he's either going to refuse a second surgery, and/or, push himself into going back to work too quickly and have serious problems.

So, enlighten me, please! Pour out your crappy wisdom on my open ears and mind. Give me your experiences, your warnings, your insights, and your tips for what to do/look out for. I'm yours to educate.

Some specific things/areas I'm wondering about are:

-Realistic recovery time from surgery (to back to desk job, back to active lifestyle, back to sex, back to ????)
-What to expect, prepare for, etc. with young children (multiple kids under preschool age)
-How long do most people spend in the hospital?
-Anyone here had the 1-part surgery, or, is that more like a majestic unicorn (everyone hears of it, but, no one ever experiences it)?
-How can I best help with recovery and support/what was most helpful for you after your surgery(surgeries)?
-What was the worst part for you?
-What was the best part for you (other than not having the pain and inconvenience of UC anymore)?
-What is something you did NOT expect to have to deal with?
-What is something you prepared for that didn't happen?
-If your spouse/significant other/family members could give me and/or other spouses/SOs/family members one or two pieces of advice, what would it be (or what would you want it to be)?
-What else would you tell someone who is about to go through a colectomy and what would you tell their spouse?

Thank you in advance!

A consultation with a colorectal surgeon is probably best. It's a no obligation question and answer session where you can ask questions just like this.

I don't think many surgeons would touch a 1-step jpouch procedure. Why? It's much better putcome and safer to do things much more slowly in multiple steps, allowing more time for healing, verifying the integrity of the pouch before using it, etc. Multiple steps keep in mind the best possible odds of j-pouch outcome and least risk of complications to the patient. With a 1-step, a leak in the new and untested pouch could result in stool leaking into the abdominal cavity causing a life threatening sepsis blood infection that increases mortality risk.

Although NSSG's case was picture-perfect, I've read many other cases where an abscess or slow healing slowed recovery from each surgery, and delayed subsequent surgeries. Patients on corticosteroids (prednisone) heal slower as due those in poor health due to low body weight and malnutrition due to prolonged uc flares. So in a less ideal case, I'd expect a much slower and drawn out timeline.

There's a lot of blogs of uc patients who've been through the procedure, of current and former healing well members that are a great resource of what it's like. Some examples:

ronnielee-fightingforit.blogspot.com/2012/08/coming-to-terms.html

itslikethisuc.blogspot.com/

Just tell your husband to forget about the 1-step procedure: it's never going to happen and I wouldn't trust any surgeon who would be prepared to try it (not that I think you'll find one).

I'm assuming he's tried all the main meds for UC - including a couple of biologics - and they've not worked?

My surgery was akin to a 2-step procedure, only instead of having a j-pouch I was reconnected to my rectum - Crohn's made me ineligible for the j-pouch. The first surgery was piss-easy: I was eating like a horse on day 2 after my operation. The bad times hit several weeks later, when I had to get off prednisolone and oxycodone (don't ask). The withdrawal(s) were hell on earth. My main advice is to get off the strong painkillers ASAP (morphine, oxycodone) after surgery. After a week, you shouldn't need them, particularly if the op is laparoscopic. Pred withdrawal symptoms will depend largely on how long your husband has been on pred for.

The second surgery was hellish. I developed an ileus, which lasted a good 10 days. I couldn't eat and even drinking was difficult. I was nauseous 24/7 and had 1-2 vomiting attacks a day. I was frequently in bad pain - the pain relief at times didn't touch the pain. Was in hospital for almost two weeks, 'cos my inflammatory markers were sky-high and I think my docs were a tad worried by it - not that they let me know, but I don't think they would have kept me in for so long if they weren't.

Also, my wound healed up fine after my first surgery but healing was more troublesome after my second surgery, particularly the ex-ileostomy wound. My surgeon left it open. In retrospect I wish she had just closed it, although technically there is a higher risk of infection that way.

This never happened to me, but I've seen several other people post about developing a stricture after surgery and needing it dilated (sometimes several times). Weirdly enough, even though I had Crohn's and a stricture before my first surgery, I never developed one after being reconnected. Quite ironic, really.

I can't give you much other advice, because your husband's surgeries could go off like a dream or he could develop every complication under the sun. If I had to give one piece of advice, then it would be not to sweat the short-term stuff. It's the long-term outcome which actually matters and I hope your husband has a successful one.

Forgot something else earlier: There is Jpouch.org you can refer to and if you're on Facebook I highly suggest doing a search for The J-Pouch Group and asked to be added. The admin will add you. (It's a private group so nothing ends up on your FB page feed). It's a great group of people there that will guide and help you and your hubby. There are 3000 members there so you get replys quickly and lots of them. There's only a handful of us that still post here.

One of the admin on J pouch.org is a nurse and she had a 1 step procedure some time ago. She could help answer some of your questions about that. Her name is Jan.

I agree with what everyone else said.

Definitely check out j-pouch.org

I wanted to add, just because a surgeon is willing to do a one-step procedure, doesn't mean you should use that surgeon. You should choose based on their qualifications, referrals, experience. You want someone who has done a lot of these procedures. 100s or 1000s.

Now to be fair to the poor one step procedure, it is still done. You just have to be the right candidate. I've chatted with quite a few people who had UC and had it done. As I stated earlier, I wouldn't want it for myself. I was too ill at the time anyway. No surgeon in their right mind would do a one step on a severely ill patient, on steroids, immunosuppressants, Ect. I think that goes without saying.

iPoop said...
The majority of uc cases are 3 step surgeries

Actually (according to my surgeon and the other surgeon I interviewed) two step procedures are done in the majority of patients. It may not seem like it from what we read but that seems to be the bigger picture. I was pretty darn sick and I had a two step. I was not on steroids though for quite some time because they had stopped working on me. I was also off immunosuppressants for a few months before surgery.

But hey, I also developed an abscess. Maybe that wouldn't have happened if I had a three step. You just never know....anything can happen.

ks1905 said...

ByeByeUC said...

But hey, I also developed an abscess. Maybe that wouldn't have happened if I had a three step. You just never know....anything can happen.

I had an abscess with a 3 step.

Well then there you go. As I said, you never know.

^I don't know anyone who "rushed" into surgery. Myself included. I was about two years overdue for it but I was stubborn. Having said that though, maybe some folks don't want to wait until they're half dead before opting to have surgery. Or maybe the thought of the heavy meds turns them off. There's nothing wrong with that. To each their own.

I think my GI fully expected Remicade to work for me and wasn't prepared for the possibility that it wouldn't. When I was first hospitalised (a month after starting Remicade - had my 3rd infusion as an inpatient), my surgeon wanted to operate on me then but he argued for giving Remicade longer to work. Didn't know any of this at the time of course - I hadn't even met the surgeon, she must have reviewed my notes behind the scenes.

I still think if I started Remicade a few years earlier, I might have been able to avoid surgery. It's not my GI's fault; he was the first GI I saw to actually get me onto Remicade at all, and he did it as soon as he could too. My previous two hospitals were jokes, unfortunately. That I do regret. Oh well.

Pancolitis means the whole colon is effected. With his ongoing debilitating symptoms, polyps and precancerous pathology, surgery is definitely a good option. I did what you described, I got it all done in one plan year to avoid paying the deductible/coinsurance two times. I don't think it's selfish at all, it's just common sense to do it that way if possible. I had the slowest of procedures (the three step). I had Step one in June, Step two in Sept and Step 3 in November. Barring complications, this should be possible. It is likely he will be able to do two steps, which would speed things up. I was concerned about having the final surgery in November and needing to go back to the doctor for follow up in 2016, but I really haven't gone. I went for one follow up, which isn't the end of the world for the deductible situation. Since surgery, I've spent so much less on medical care. I am off all drugs and I don't have health issues, so I don't go to the doctor.

I think it is common to be med free after surgery. My surgeon told me that some people take imodium or similar medication to slow the bowels, but it really depends on the person. I haven't really felt the need to take anything since my takedown, but it is something I would consider if needed. I know a few members have continued taking iron, probiotics or other supplements too. My situation now is MUCH easier to manage than it was with chronic severe UC.

That's great! Best of luck to him. I had a two step procedure as well. If you have any specific questions please feel free to ask!