I am scheduled to have colectomy and j-pouch creation in late November. The surgery is supposed to be laparoscopic and I will have a temporary ileostomy. My wife has some questions and asked that I post them for her:

* What kind of support will my husband need during different phases of recovery? (E.g. Maybe-- First few days he will need me to express needs to medical staff. Week one- He might need me to move from room to room)
* Do we need someone at the hospital 24 hours a day? ( Do shifts with friends/ relatives)
* Will he have access to medical assistance outside of the hospital (ostemy nurse?) Details on this. Who? How often would they visit? What kind of support do they provide?
* Will my husband want visitors in the hospital after surgery?
* How much time should I take off work?
* Should I take time off entirely or part time (e.g work in mornings)
* Any suggestions on how to help a 3 year old understand the situation?
* What will my daughter need to know (Don't jump on Daddy)
* Any special equipment we might need (purchase or rent)
* Are there special fixtures (toilets) helpful for afterwards?
* What should I do to prepare?
* What else should I know that will help me to support him?
* What else should I know to mentally prepare me for the operation, support and recovery afterwards?

Thanks,
Kevin

Hi Kevin (and wife!) -

Welcome! Many people will come along with answers/advice for you; here's my advice (I started my surgeries last December and just had "takedown" in July - doing very well and loving life!)

1) You will likely be in the hospital anywhere from 4 nights to 7 nights. I was there for four nights, which is pretty quick, and I had an "open" surgery; with laproscopic, you might even be less. The first few days are sort of a blur - on pain meds that make you sleep a good portion of the day. It's always a good idea to have an "advocate" family or otherwise in the hospital with you to make sure you are being cared for properly, but isn't necessary 24 hours a day. Mostly during "business hours" is when I wanted someone there with me.

2) Again, in my opinion, no, you don't need someone there 24 hours a day - a lot of sleeping will be going on, and believe it or not, it can be somewhat stressful for the person recovering to have people in and out of their room all day and night. You both will benefit from a good night's sleep - both the visitor and patient, and that can probably best be obtained by having you (the wife) sleep at home at night.

3) I had an ostomy (ET) nurse available to me once I left the hospital, but I had to go to them; they didn't do house calls. Not sure if it works this way in Canada...in the U.S. the nurse comes and visits in the hospital to show you how to do your bag change, etc, and then you follow up IF YOU NEED TO later. Some people don't ever need to see the nurse if they have a well behaving stoma.

4) I personally liked having visitors in theory (I always told people to come visit) and then once they got there, I found it to be a lot of "work" to stay awake and be lucid and have conversations. It's all really dependant upon how you are feeling on a particular days.

5/6/7) For the patient, I took 6 weeks off of work with my first surgery. I think most people take 4 to 6 weeks off, but everyone is different. My husband stayed home with me for the first 4 weeks. I think it's a good idea to have someone there 24/7 for the first week home, and then after that you can start to be a bit more dependant. But again, it really depends on the person and their comfort level with dealing with recovery either on their own or with their spouse.

8/9) I don't have children, but your daughter will probably not understand that her father can't hold her for a while. I imagine that would be tough on kids, and your husband won't be "allowed" to lift more than 10 pounds for the first few months. So I think finding special/new activities that she can do while sitting next to him (not in his lap) like coloring or something might make the transition a bit easier.

10 / 11) Based on my experience, no, you won't need any special equipment after the surgeries. Some people buy bidets or sitz baths after takedown, but I haven't needed that.

12 /13 /14) You can't really prepare. You just need to know that each day is going to be something new. You might have a good day, followed by three bad days, and that's just life. Take each day as they come and know that the end result will be worth it. Make sure that you take time for yourself (wife) - go out with the girls, get a massage, etc. This is obviously a lot about your husband, but you also have to take care of YOU - that's the best advice I can offer to the both of you.

Good luck!
Lisa

Hi Lisa,

I passed on your reply to my wife. She really appreciated it!

And I hope I can get out of the hospital as quickly as you did!

Kevin

Hello Here's my 2 cents....
It's definitely nice to have someone there when you get out of surgery. It depends what kind of meds you're on but I had no trouble communicating with my nurses and other staff memebers to get what I needed and to help me do things. Once you're up and moving around a bit I found it nice to have my mom there to help me move from my bed to a chair, or take me for a little walk, that way I didn't feel like I was monopolizing my nurses' time. You won't need someone there 24 hours a day. Basically all you're doing for the first few days is sleeping, napping, talking, walking a bit. I had my mom with me in the hospital daily but I don't think I would have wanted any other visitors, everything you do is exhausting, even talking is difficult for long periods. I was in the hospital for 7 days, I think I would have left earlier but my ileostomy was leaking daily and they wanted to help me figure that out before I was discharged.
Once I left the hospital I found that I needed quite a bit of help for daily tasks. I needed help washing, making food, getting dressed, carrying things, etc. After about 2 weeks I was able to do a lot more basic tasks by myself again. I can't think of any equipment that you'd need, the only thing I noticed was sitting down and getting up off the toilet is a bit of a struggle sometimes because of mobility and soreness, I used a towel holder and the toilet paper holder to push/pull myself, I was a bit nervous that I might pull them right out of the wall, but so far so good.
I don't have much advice about kids, I guess the obvious one you mentioned which is not to jump around or jostle you.
Other preparation I guess would just be making sure you have what you need for the hospital, I actually brought a lot of stuff I never even used (books, books on tape, ipod, etc). I actually spent a lot of time just thumbing through magazines, resting, staring out the window, pondering the meaning of life, etc. Lol. I prepared mentally mostly just by reading lots information on colectomies, ileostomies, etc, I found the more knowledge I had the less apprehensive I felt. The most difficult thing I faced was managing the ostomy, it's just a bit intimidating and mine leaked so much at the hospital I was paranoid and checking it every 10 minutes to see if there was anything leaking. The ostomy nurse at the hospital will help you and will most likely set up Home Care visits for you, during which a nurse will come to your home a few times and help you manage things or give you tips. When I left the hospital I called the Supply Companies (Hollister, Coloplast, Convatec) and got them to send me samples to try out. The hospital and home care nurse should also give you some supplies at first.
In terms of support from your wife, I think just her being there to help you do things and talk to you will be most of it. I don't think my mom really did anything to prepare herself.
For after the surgery, I made sure I had some things to do, lots of books, movies, paint-by-number (i'm 24 but i find it really fun and time-consuming). As you start to feel better you'll do more and more things just out of boredom and as an excuse to get up and move around. I'm 3 weeks post-surgery and I'm still not doing very much, the highlights of my day are usually little walks outside or baking cookies. Well, hopefully some of that helps, I think I may have rambled on and on. Oops! Let us know if you have any other questions.

I just wanted to say that the scariest thing about waking up after my first two surgeries was that no one was there. Especially after the emergency one with the breathing tube. I wouldn't I see a familar face til the next day. On the third surgery (TD)a cousin was there, it felt so much better. Bring lip moisturizer for right after surgery. I was so insistant that after the second surgery my dad had them tape a tube to my bed, so i'd have it when i woke up. It was such a relief!
-sara

I agree with the above post about the lip balm. My lips were badly chapped after surgery. I listened to my Ipod a lot while in the hospital. It was much more relaxing than listening to all the noises coming in from the hallway.

My surgeon recommended that I use a shower stool or else a white plastic lawn chair in the shower once she released me to home. The idea was that I would not wear myself out too quickly. I must admit that I didn't use either, but can see how one might be handy.

Have your wife stock up on easy to digest foods for the first few days you are home and keep in mind that you will most likely be more comfortable with small frequent meals than larger ones spaced further apart.

Advice for your wife: You really want to help your husband avoid complications. He will be weak the first few days, but little walks will prevent blood clots. Your assistance to help him go on walks especially if he feels faint will help a lot. He will be hungry after a few days. Take it real slow and encourage him to eat only soft foods. Better safe than blockage. Other things my husband did for me that I really appreciated were foot rubs. Emotionally I was a wreck. It takes awhile to adjust to the feeling that you are different now and it is ok. Tell your husband that this surgery is not a burden to you (because he may feel that way), but tell him that your love for each other can grow as you give, and he receives your loving care.

I just had my takedown surgery Oct. 3 and since I'm not married my parents did everything for me but this is what I appreciated. Them being there at the hospital, it does get lonely. I also took my ipod. Another thing is that it is nice to have someone to walk with. Walking is very important after surgery. Now after my second surgery my dad has been walking around the house with me. It helps when people make you or do it with you. I had a lot of problems with applying my ostomy bag and getting appliances so i recomend getting acquainted with an ostomy nurse. My mom works at school so she was home with me for my first surgery and that was nice cause she could get my food and made sure I was drinking enough. It is easy to get dehydrated. After the second surgery my parents had to go back to work but there is food already made so it is easy for me to warm it in the microwave. If you have things prepared like food you shouldn't need to take a lot of time off work. As for the 3 year old I would just answer the questions they ask in simple terms. Kids can be curious. You can be supportive by being there and helping. Don't rush things. My parents always waited for me when changing my bag took forever or when I wasn't feeling as well as I thought I should. Have patients and show love. Good Luck

Pixie,

Your 2 cents sounds like my experience. I wish I knew about this site before my surgery's. Thnak you for sharing your story. I am now recovering from the j pouch. Good luck

helen

This is answers based on my recovery.

"What kind of support will my husband need during different phases of recovery? (E.g. Maybe-- First few days he will need me to express needs to medical staff. Week one- He might need me to move from room to room)"

I had no one at the hospital with me and I talked to the nurses fine.
When I got home I did need help going room to room.


"Do we need someone at the hospital 24 hours a day? ( Do shifts with friends/ relatives)"
Again I was by my self the whole time so I'd say no.

"Will he have access to medical assistance outside of the hospital (ostemy nurse?) Details on this. Who? How often would they visit? What kind of support do they provide?"
Yes you should have a home health nurse that will come out about 7 times to help you. They just help you get use to having a ostomy. They give you tips on how to change it ect..

"Will my husband want visitors in the hospital after surgery?"
Maybe it depends on how well he is feeling. I did not have pain but it felt like some one took out all my insides and jumbled them around.

"How much time should I take off work?" I was fine by the 2nd week

"Should I take time off entirely or part time (e.g work in mornings)"
This I don't know.. I needed someone with me because I have small kids and I'm a sahm.

"Any suggestions on how to help a 3 year old understand the situation?"
What ever you deside to tell her make sure to let her know that Daddy will be fine. I did not tell my kids until a couple of day's before the surgery.

"What will my daughter need to know (Don't jump on Daddy)" Def Don't jump on daddy. I tried to hide my stoma from my girls but they wanted to see so I let them. I was thinking that they would freak out but they did not.

"Any special equipment we might need (purchase or rent)" Nope

"Are there special fixtures (toilets) helpful for afterwards?" YES YES YES a handheld shower head. You know the one that has a hose that is the best thing I have come across!!

"What should I do to prepare?" Not much I don't think

"What else should I know that will help me to support him?" Just love him and let him know that!

"What else should I know to mentally prepare me for the operation, support and recovery afterwards?"
I know right after my surgery I got super depressed and just wanted to die. So keep in mind that he might go thru that depression stage. I snapped out of it in about a week. My husband got me out of the house and I felt tons better.