And I'm British, 43, 5 months post op and I just moved you! First off, two weeks is very early days for this op. It took me about 3 - 4 weeks to move around properly and then it was just the odd 200 yard walk up Cheddar Gorge or similar. I walked like the Mummy! I tried to do a bit more each day and my girlfriend was an absoloute champ and with me every step of the way. My op was October 19th last year and, to give you a rough guide, I had a really lovely Christmas and was well down the road to recovery by then (everyone's different but that was my experience).
The bowels I can absoloutely relate to. I began to think they would never change and would always be liquid. I'm happy to tell you that 5 mo on, I can eat pretty much what I like and my bowels are pretty much back to normal. There are a few foods I am wary of (grapes mainly!). I know when you are in the middle of it all it seems like it'll never get better but it will. It can take a few months though. I found, for me, a major improvement in my bowel function was brought about by drinking things like Actimel twice a day. Or some other pro-biotic product like yakult. Your bowels are in major shock and need a bit of TLC. My other great strengthener was chicken soup. If your husband is anything like me, he's probably up all night flushing tubes and generally not getting a good nights sleep. this probably isn't helping. I also lost a lot of weight which has now come back (unfortunately!)
I had a few problems with infections when I was at your husband's stage. Particularly with the catheter. They also made me feel very weak and destroyed my appetite. And also big temperature fluctuations. If your appetite suddenely disappears and you feel clammy and generally grotty (more grotty than normal!) then its worth trying antibiotics as these can be indicative of an infection.
The next step is pretty challenging in a different way but I felt great getting rid of the catheter. It meant I was finally just me again and I could finally sleep on which ever side I damn well pleased! Where in UK are you? - I'm in South West. How old is your husband? Please tell him from someone who's been through the same thing and from the bottom of my heart, it's all going to be ok. I feel my life is 98% back to what it was before the op. The bits that are different I've adapted to much more easily than I thought. I painted my spare room today and am going for a day in London this week. My main issues right now are nighttime continence. But I do have 50% dry nights and I've been a bit slack with the pelvic floor execrcises. Daytime, well, there are some days now where I completely forget about the op. I found Boots do a good range of "own brand" continence products (green packet) that are a lot cheaper than the main brands - I use their pull-ups at night and they work well for me.
If you have any questions or want to PM me please do. I'd be really happy to help in any way I can.
You might want to move this over to cysectomy section and Tim will weigh in...he's from the UK not that the problems are any different post op!
When i went back to my internist who was following up with me as i had my surgery out of town I was so depressed because it had been 6 weeks and they had told me 4 to 6 weeks i would be feeling better. He just laughed and said.......they should have said 4 to 6 months! One of the things was i was so sleep deprived from having to cath every 2 l/2 hrs..(I got an Indiana Pouch)........You are tired...the anesthesia plus all the healing thats taking place takes time. The bowels were the WORST...i would sit on the toilet and just cry it was so painful. I also was on antibiotics for 6 weeks and a stool softener. It does get better..but don't expect too much too soon. The body needs the sleep to heal. All he is experiencing is perfectly normal. Pat
I know it took me awhile to get my energy back. I also had a total hysterectomy on top of the neobladder. I don't know if that makes any difference or not with the energy level. I had problems with my bowels post-op. I experienced really bad gas pains and couldn't move my bowels for almost five days. It was so uncomfortable and the Dr.'s didn't want me to take laxatives but I did take stool softners and a suppository (spelling, I don't think they have a spell check sorry)ended up I had to do a enema. I also developed a pretty bad bladder infection with a high temp and vomitting but I didn't have to go back to the hospital but it was close. So, I had a rough two to three weeks post-op. I didn't have the energy to do much of any thing. My sister stayed with me and did all the cooking and wash(thank god for sisters)for about two weeks. When I had my foley removed all I did was leak even with the Kegel exercises but I had a fistula and didn't know it.
I started working at home around the fourth week. We have our own business so I could do that. I did not go back to work until five weeks and I think that was too early. I had to go to the bathroom like every 1/2 hr. or so. It was really hard. I started going to a Physical Therapist for my bladder training which helped some but not much. I also was on antibiotics for six months post-op, my Dr. automaticaly puts you on them. They will make you tired also. To tell you the truth I still don't feel 100% and it's been around nine months. I think I started taking walks around the block (around 1 to 2 miles)after four or five weeks. I gradually worked up to that distance. I started playing tennis after three months but not for a whole set. I just hit for about one hour or so. They instructed me not to do anything high impact for awhile. Before my surgery I was pretty active with tennis and step aerobics.
So, I hope I didn't bore you but it takes awhile. I think I read on the forum that it takes about as long as your surgey was to get back to your energy level. My surgery took 41/2 to 5 hours so 4 to 5 months , that was about right. Around Oct. or so I felt pretty good but still got tired after work. But, remember I think I had this fistula from the beginning so it probably took me longer. I hoped I helped you.
My husband has been home now for 2 weeks, following cystoscopy and construction of neobladder. All seems to be going well generally, although a lot of his pain and discomfort is to do with getting the guts and bowels functioning normally again. We hope catheter may come out soon, and then the next hurdle will be training the new bladder. Main problem at present is the degree of weakness and exhaustion he is experiencing, and he is getting very frustrated that all he can do is sit around, or sleep all the time. I guess that is what the body must need, but we hope he will have more energy soon. Wondered how long it took others to regain their energy? He had his operation on 1st February. Most of your contributors seem to be in the U.S.A. Are there any british members out there?