Newbie facing surgery

Welcome to the forum!

I had a two step (proctocolectomy and j pouch creation at the same time) then the second step was takedown (ileostomy reversal). Are you having a three step procedure?

I had some complications after my first step (abscess/infection) so that set me back a bit. My recovery from that was slow. It took a couple of months before I felt human again.

Takedown was much easier for me and I recovered very quickly. Three weeks after that surgery I was back to my normal daily routine.

At the time I wasn't working (stay home mom) so I didn't have to worry about returning to a job outside of home. Six weeks is what they told me to refrain from driving. Mostly because I was on pain meds.

To answer your stoma question....I had a really, really hard time with my ileostomy. Major skin problems...itchy and painful. So for me absolutely no question the j pouch is a blessing and I love it.

My first surgery I was in the hospital for 10 days and for takedown I was in for 4 days.

You should inquire about any possible complications just in case so you aren't surprised (like I was!) if something pops up.
Also ask if there will be a stoma nurse to help you. And what is their pain management regimen after surgery.

Best of luck!

Thank you so much for the response! Right now, it seems as if it will be atwo step procedure. I have my preop on Feb. 14 and will have more answers at that time.

I am more nervous about the STOMA . My sister had one due to complications of ovarian cancer and her quality of life diminished greatly at that point. Infection; difficulty with emptying and reconnecting ; it got infected; she was in pain. I am not sure I am prepared for that. I am already thinking that at 42 does this mean my life will be short?

Last year I had a dermoid removed from my ovary. I learned that I ave a fibroid in my uterus and a spot on my adrenal. Feeling.....scared. Uncertain. Negative.

Is it worth it?

It's well worth it for me - I got my life back. It's probably easier to face the need for surgery if you feel like hell, but it's easier going if you're healthy going into it. In any case you will have some challenges ahead; that's the hand you were dealt.

****ty hand....no pun intended but it is what it is. Trying to be as healthy as possible going in to it all. Stress about not working is troubling me.

Ostomy technology has improved a lot just in the past few years. I really didn't have trouble with my ostomy... so much so that I considered keeping it instead of getting the j-pouch. In retrospect I do prefer the j-pouch over the ileostomy but it was not bad at all. The important thing is to have a good stoma nurse and to not ignore the first signs of irritation.

But you don't have to worry about that yet -- take things one step at a time.

I am currently considering going to a permanent ileostomy to fix a different problem, and I have to say I am really not liking the possibility because I love my pouch!!! I've had 4 stomas (one end, three loop) and Liz is right. Ostomy materials are sooooo much better now, and a good nurse and being on top of things helps immensely. I have a loop stoma right now while I heal from another surgery and I go & do & eat what I want, when I want, where I want. No problems. Everyone is different and your sister's very unfortunate experience does not mean yours would be the same.

Having said that, the "everyone is different" is important to keep in mind. Healing times differ for everyone. A lot of factors come into play: general health, attitude, support, etc.

And, btw, I am 42 as well. Have had other health issues besides the UC and my surgeon keeps assuring me that I have a LOT of life left! Of course, that might just be because I'm a stubborn smartass...

Best to you as you make this decision,
Gin

Thank you, everyone. I am really enjoying hearing from others and each of your individual experiences. One of you mentioned 10 days in hospital following first surgery; anyone else? What was your time in hospital following first surgery? And what about return to work?

I also appreciate the info on the STOMA nurse. I would have never thought to ask that. I am nearly 2 hours away from my surgical team so I am hoping they will set me up with someone close to home. Maybe I should check in with my GI Dr here for that info?

Thank you again. Knowledge is power and I need all the power I can get right now!

Best,

K

I was in the hospital for a very long 10 days, but that was after a one-stage procedure. It was a long ten days, but it's all the hospital time I've had to do for pouch-related health care.

You can probably find an ostomy nurse at the hospital nearest you. Although I've not had an ostomy (a benefit of a one-stage procedure), I found an ostomy nurse at the local hospital when that seemed likely to be in my future. I admire many kinds of nurses, but that seemed darn close to sainthood. It is the only health care encounter I've ever had in which no payment was mentioned. I'm still flabbergasted 12 years later at being treated that kindly and generously, and I hope the hospital administrators never figure out how to ruin it. I hope you have an equally nurturing encounter.

Thank you Scott. I am hopeful my local GI doctor can help.

If not the local GI doctor, see if there is a local colorectal surgery practice. They will usually have a WOCN (wound, ostomy, and continence nurse) either on staff or someone they can refer you to.

I agree with Scott, all the WOCNs I've ever worked with have been absolutely top notch.

I had an ileostomy formed in May of 2012. Most of my colon was removed and believe me, that ostomy gave me my life back. I did not know it was possible to feel so good! I had a great team of WOCN's which really helped.
I had my j-pouch formed on Nov 21, 2013 and for the first few days really regretted it…pain mostly. Once I got up and around I felt much better. I am so glad that I had this done but if my surgeon said I had to go back to having an ileostomy it would not be the end of the world. I know I can manage.

Would any or all of you mind sharing with me:

1. How long your hospital stay was following the first surgery?
2. How long you were out of work?
3. How long was your hospital stay after second surgery?
4. What does "takedown" mean? I see it on many peoples "signature"

You all have already been so helpful. I have a growing list of things I need to ask my Dr as well as get ligned up here closer to home with the wound care nurse.

Thank you!

Please don't be frightened by my answers..... I was not healthy when I had my surgery, but my life is now on track:

1. Emergency colonectomy: Five weeks (due to numerous complicatons)
2. I did not have a job to return to as I was medically separated by my employer and used my LTD as a stop-gap between the 3 surgeries.
3. J-pouch 1st step: seven-day hospital stay
4. Take-down: taking down of your stoma that was acting as a diverter (I am sure somebody else can explain this better). This was 5 days in hospital.

I was able to find a part-time job 1 month after take-down.

I had three steps so your first surgery is more similar to my second surgery, which I was in the hospital for six days after.

I was out of work for six weeks after that surgery, and three weeks after the last surgery.

I was in the hospital for four days after the last surgery (aka takedown).

Takedown is the last surgery. It means that you get rid of the stoma and start using your j-pouch (having BMs through the anus).

Thank you Liz. Any issues eating anything you want??

I'm having J-pouch surgery on Wednesday, 1/29/14. What should I expect after surgery & at home? I am a single mom of a very busy 7-yr-old with special needs. I haven't been able to earn any income for 17 months since my flare started. Thanks for sharing your experiences!

M

Melissa, you're going to need help when you get home, IMO. I don't think you can count on being the sole caregiver for a special needs 7 year-old right after discharge, regardless of what stage of surgery you're having. I stayed with family (in case that sparks any ideas for you).

Hi Melissa, I agree you will need lots of help. For a couple weeks I only had enough energy for taking myself to the bathroom, getting a small snack or my daily walks (which are so important). See if you can arrange for a friend/neighbor who is willing to give your son rides to school, see if someone can stay with you, get meals ready for you and your son in advance, etc. Also one of the most thoughtful things my mom did for me beforehand was disinfect the house and wash all the sheets. I was incredibly blessed that my husband was able to stay with me full time. He would sometimes arrange for a "babysitter" if he needed to get out

Moral of the story: you WILL need help, and please don't be ashamed in asking for it because it is SO important to your recovery. If you take care of yourself well on the front end you'll be much better in the long run.

It's not an easy thing to look forward to, especially in your situation. Blessings and prayers for you to have the right people care for you during recovery.

Thank you all so much for your replies. I certainly have a friend or a couple family members who can drive my son back and forth to school, etc. I'm used to doing everything myself, so thanks for letting me know that I'm really going to need someone to stay with me, at least for a while during the day. My sister is flying in today to care for my son while I'm in the hospital, but I don't know that she can stay much longer than that. My local family members would really be put out if I needed care during the day, or if my son & I needed to stay with them. I'll have to see what I can arrange. Again, thanks for the reality check!

M

I found out that my sister has an open-ended ticket, so she can stay for a little while longer after I get out of the surgery. How long did you need care at home? If I'm off the pain meds at home after a week, can I go back to driving, or is that going to be too soon? Thanks! M

Yikes, I think going off your pain meds in a week might be kind of quick. You might be able to pull it off, but part of the concern for driving is that sudden movement can be really painful for a while afterward - not just the narcotic factor. Check with your doctor, but plan for a longer recovery time rather than shorter. You might be able to drive yourself to the store, for instance, but I wouldn't have been able to make it more than a couple minutes walking inside. I would say two weeks of care at home is what you should plan on.

I had a really great recovery and thought I was ready to go out and about two weeks later (cabin fever), so we went out to a movie. I ended up getting a nasty stomach virus that landed me back in the hospital from dehydration and some of the worst pain in my life because I couldn't keep down my meds. Yeah, bad idea. Your immune system is working overtime on your recovery so don't compromise yourself too early!

Thank you for the reality check! I've been super sick with this disease 17 months, so I think I can do anything. I will heed your advice & wait. Can't believe you got sick from going to a movie! Your honest responses are a blessing! Thanks again! M

Hi all,

Just wanted to say that I came out of surgery ok. Doc thinks it's colitis, so this will hopefully be a cure. One day is up, the next is down, but thanks for all the support!

M

They wanted to kick me out of the hospital after 5 days but I was not ready so I got them to give me an extra 2, it was the weekend.

I was in the hospital 6 days after Step 1 and Step 2. No complications. I was 60 years old and am now 73. My J-pouch is wonderful. I kept my ileostomy for a full year....by choice....because I could eat/drink everything and once I learned which products worked for me, I didn't have to change my baggie for a full week. In fact, I could have gone longer! I was reluctant to give up all that freedom for the unknown...a fully functioning J-pouch. Well, I'm glad I did because my "new normal" is great! Whatever issues I have, and there are but a few ever, are easily resolved! I eat and drink whatever I want! I did stay home from work for about 6 weeks. After Step 1, I needed to do that. After Step 2....I was ready to roll immediately! Guess waiting a year for my takedown paid off for me! Best wishes!

I had a two step.
I had some complications after my first step due to a bleeder 12 pints. I spent 17 days in the hospital. I had my Ileo for 8 months with in a month I was up to my old tricks did a 4 day off road jeep trip, I wont say I wasn't tired. with in 2.5 months I was on the road working full days on a rail way job then off to a Hydro power job, I just tool a job driving a passenger coach.

Thank you everyone for the information and Melissa I am glad you came out OK. be kind to yourself as well as gentle. Listen to your body and allow it to recover. This community has certainly helped me calm my fears. I am a fitness specialist and on my fett much of the day. My commute is long; an hour plus one way. So, how long did it take some of you to drive? I work for myself so not being able to work is a concern. i am trying everything I can to earn as much $$$ now so that i won't be too stressed after the surgery. Not good for the immune system! I am even raffling off a $250 spa gift card :0 have to be proactive!

Thanks again everyone!