I want to hear your recovery stories!

Hi Fapqueen,  I had my takedown the beginning of August this year.  I went back to work part time at the end of September.  I may have been able to go back sooner but didn't need to.  I do know the first two weeks I stayed close to home.  I think it probably varies based on your recovery, type of work you do.  When I initially started back, I helped in the office but recently started back doing home visits (I work with young children and families in their homes,). I am still only working part time (per diem), so not a lot of hours.  I am also a semi-retired teacher so receiving a pension.  If I was younger I probably would have gone back to working full time and much sooner.  Recovery from this surgery was much easier than the colectomy and formation of the j-pouch.  I got back my energy much sooner.

Had my takedown about 6 weeks ago and started back at work this week. Office job and back on reduced hours although to be honest i could easily do full time!  My 'regularity' does still fluctuate a bit depending on what i eat, but i am eating completely normally (no restrictions) and i don't take any meds (no immodium etc). Yesterday i had no discomfort and only visited the toilet twice, today i have a bit more discomfort and have been 6 or 7 times, but i can easily 'defer' until it's conveinient. 

i guess my biggest concern is i keep getting the feeling of urgency, but i know it's not urgent and it passes in a few seconds.  How quickly that sensation comes back again let's me know how urgent it really is!

I'm hoping as i continue to recover this will improve and i know i can take immodium etc if i need it (long haul flights etc).

i prefer this to the stoma no question at all.

I'm finding it tricky to write a reply. I would like to ask, are you having everything done at once or are you having the j pouch constructed first then a takedown three months later? Also, are your jobs very physical?

I am having the j-pouch surgery and getting an ileostomy bag for 4-6 months.

I am aesthetician, and also work part time doing retail. Two very physically demanding jobs.  Hence why I'm so worried.  

My first of a 2 part surgery Had me out for 6weeks and was tired the first 2 weeks back, but I am a teacher so it is a demanding job. 2nd surgery I had in the summer, but if I had easy access to a restroom I could have gone back after 2-3 weeks.

I had 3 part.  I would probably have gone back to work part time earlier except that I had a frozen shoulder, so had therapy 3 times a week and also needed to take care of a heart issue, SVT, so needed to have procedure for that.  I had my second surgery in June and the last in August, so I did not work in between these two surgeries.  As you can see, every case is different.  Basically, I was out of work for several months over the last year and a half, between hospitalizations prior to surgery and 3 recovery periods.

The takedown is much easier to recover than the first.  Just had to deal with my j pouch waking up after the operation after eating solids.  Frequency in the first week was plentiful and hard to hold.  Did use assistance from Imodium to slow things down.  Got back to work (desk job) 5 weeks later.  No real diet restrictions except for hot spices and some deserts.  I do find bidets work great and now on Metamucil to bulk things up (twice to three times a day).  Life is pretty much normal just used to having 4-6 bowel movements a day (heard differs for others).  Life is certainly better than having the pouch for me at this point.  About 6 months since takedown.

Thanks for the extra info. Both operations may have complications but as you are young you should hopefully avoid them and heal quicker. Having the operations done when you are "healthy" helps a lot, instead of being done as an emergency as I was.

Recovering from the J-pouch construction: this is the big one, 3 months for sure I'd say. If it's keyhole then I guess you would recover sooner than being cut open. You will need to adjust to having the bag and all the effort involved around that - getting supplies, changing the bag etc. It didn't really bother me too much but having an ileostomy and a bag can be a difficult thing to deal with in all sorts of ways, physical, emotional and social. Especially as it will be a loop ileostomy which can be more difficult to manage than the end ileostomy.

Recovering from the takedown: this is pretty easy, 1-2 months perhaps? You could probably go back even sooner if you really needed to but it wouldn't be the best idea. I needed the hole left by the ileo packed every day by a nurse for a month then less often for another month or so.

The problem you will find I think will be a lack of energy. Your body needs your "energy" to heal and recover, not for going straight back to work ASAP. And even once you've healed, you may find, as many people do, that you don't have as much energy as you used to. I really don't think you will be able to cope having the operations and then going straight back to doing two jobs, it'll be too much.

How did I pass the time? Well that's the bit I enjoyed the most! When else in life do you get to laze around and think "I have no choice here, I MUST relax and do nothing to give my body time to heal properly". At first you can't do anything for yourself and you are not even meant to lift a kettle of water incase you damage yourself so I let other people make me cups of tea then as the weeks go by, you gradually build up to being able to look after yourself again, go for small walks, watch TV and I took the opportunity to read the Game of Thrones books.

Hope this is helpful. It's just my opinions, everybody is different.

I had my surgeries about 5 years ago.  I took a month off of work before the first surgery so I could be in good shape for the operation.  I healed for 3 months with the bag and then had the second part of the surgery. Then healed for a little over 2 months without the bag and went back to work.  

The three months with the bag kind of sucked.  I was very anxious all the time and thought the bag would fall apart.  But once I became a pro at puting on the bag and making sure it was secure, life was a lot better.

Now, today, I feel pretty good.  I definitely feel that having the surgery was the right decision.  I work, go out with friends, date, and exercise as much as I can.  Sleeping isn't the best but it's improving.

Through it all, the best medicine has been my family.  They are a great support team.  My parents and siblings have been there for me every step of the way.

Make sure you have a strong support team, because this journey can not be done alone.  Make sure you have a very good surgeon as well!!!

Good luck!!!

PS - I also, like GB2014, got into Game of Thrones during my recovery. But I binged on the show. I'm reading the books now. Sorry, if you don't give a crap about Game of Thrones.  I just had to put it out there.

I'm an old fogie and have my k pouch for 37yrs but have had quite a few full blown revisions (to do with the k pouch valve...nothing for you to worry about with a j pouch)...each revision had me out for a full 6 weeks...that included post op recovery plus getting my strength and energy back.

There are things that you can do to make it go a bit better but you cannot rush the healing process.

You can start out with optimum health meaning eat well, taking necessary supplements (a good multivitamin plus whatever your doctor may think you are low in like Vit D now that winter in here...), make sure that you are not anemic, drink sufficient fluids, exercise to keep those muscles strong especially since you will be mostly bed-ridden for the best part of a week or longer and muscle can start to atrophy rather quickly.

Make sure that you do not rush it in the sense that pushing yourself too hard too quickly can lead to setbacks...so baby yourself...this is not a 1-mile sprint but a life long, long-distance run...

Make sure that you have food and supplies ready at hand so that you do not have to bend, stretch, carry, climb or twist for the first while.  I tell people to keep everything that you need at counter height so that you do not have to crawl to the back of the cupboard searching of stuff.

Ditto for shoes and boots...shoelaces can be challenging in the beginning so Ugg-type boots of velcro or slip-ons are a good choice. 

Stock the freezer with good quality proteins like fish and chicken and the cupboards with canned soups (they keep your sodium up so that you dehydrate less easily).

Make pre-op lists of stuff to get done so that you do not have to stress post op (things that need to be packed or cleaned of mailed should be done in advance), make sure that you have a go-to person that you can count on in a pinch for emergency help or a friendly cleaning lady on speed dial!

Then just sit back and let your surgeon and mother nature do their things.

Good luck

Sharon

All I can say is expect the unexpected. 

Keep an open mind.  Of course it's scary.  All of it is.  It's a major major surgery.   

My story went the wrong way.  So I'm not going into it.  But I am all good now.  

I wish you the best.  Get strong and get ready! 

It's definitely a journey. 

Richard. 

My husband had his operations 22 years ago. The first operation was on February 14 (yes, Valentine's Day) and his second occurred D-Day in June.  He was back to work between those operations (part-time at first, then full time). He felt better than he had in a long time (he never was in remission with that blasted colitis).  Just try to keep the stress down and don't try to do too much.

Fapqueen, i just read this Message thread again and realise it probably doesn't give you a lot of reassurance.

It is a big operation, but not overwhelming.  It's usually preferred to have a 2 or 3 step process depending on your situation which makes it a bit easier to cope with.

Early on, your pain will be well managed and your only objective will be getting out off hospital.  Once your back at home it will be organising yourself, getting in and out of bed, getting used to bags (if you have an ileo etc) and prob still on pain killers.  After about 2 or 3 weeks you will see a big improvement in pain and mobility, and will probably be walking and fending for yourself.

Most people feel able to return to work around the 6 week mark, personally i found standing easier than sitting when i had the ileo because i guess my posture isn't great and the creasing of my middle when sitting encouraged bag leaks, although this was manageable (i just changed the bags more often), im actually converted to jpouch now

If your anything like me, your condition will change weekly, usually improving but my aches pains and twitchings move around.  To start my pain was everywhere, then just at surgery site for 2 weeks or so, as of yesterday no surgery sure twitches at all, but much lower down (which has not been a problem before).  Assuming it's just part of the process.  It didn't stop me going out for the day and it won't stop me going to work today.

Wouldn't wish the operation on anyone, but if you need it don't fear it, you will cope, and being young and informed you will probally cope a lot better than most.  It's all new to me and still healing, the past 3 months every week has been different, but usually an improvement.  By the time you stop worrying about getting out of hospital etc, the worst is a blur behind you, it's still a long trek but manageable with a few concessions (diet, exercise etc) although 2 months out I'm eating and drinking everything (in moderation) and my exercise isn't restricted besides lifting heavy weights (for another month or so)

The guy's here are brilliant for support and advice too.  Good luck

How long did it take you to recover? What was your recovery like?

I had two surgeries. In the first (sub-total pancolectomy - keyhole), they removed most of my large intestine, leaving most of the rectum, and gave me an end ileostomy. Three and a half months later, I had the second surgery (open surgery). They removed my ileostomy, removed almost all of the rectum (leaving a small 'cuff' at the site of the join), created the j-pouch, and connected it.

Recovery from the first surgery was really quick. Going into it, my colon was a mess, but I was otherwise in pretty good systemic health, and I was young (33). I hadn't been on prednisolone for a long time, which also helped. I was in hospital for 6 days. After that I was at home recovering for two weeks, and then I went back to work. I had no issues at all with my stoma. It improved my life a lot.

Recovery from the second surgery was a little bit slower, but not by very much. I was in much better physical shape going into it. Six weeks after the colectomy, I was back in the gym, doing lots of cardio, lifting weights, etc, with a view to being as fit as possible going into the j-pouch surgery. Again, I was in hospital for six days. The first couple of weeks at home definitely felt more physically demanding than the first operation. I was a lot more tired, the wound was more uncomfortable (as it was bigger, and had more staples) which restricted my movement. I was well enough to go out for dinner with my wife 13 days after the surgery, though I found that tiring. I think I would have been well enough to go back to work after four weeks, but my employer was happy for me to take as long as I needed, so I stayed off for six weeks. By then I was definitely more than ready to get back.

How long was it before you could return to regular life?

After j-pouch surgery, not long. I have never had any urgency. I had a small amount of nighttime leakage during week 1, but apart from that nothing. By week 5 I was emptying my j-pouch 4-5 times in 24 hours, and starting to sleep through the night pretty regularly. I'm now 3 months on from surgery. I honestly think if you met me without knowing about my UC past, you would never suspect a thing. I now regard myself as living a totally normal life.

What did you do to pass the time?

When I was in hospital after surgery # 1: I was very comfortable and my stoma started working as soon as I started eating. As weird as it sounds, I had a  restful and relaxing hospital stay. My UC had made my life pretty miserable, and I was just glad to lose the colon and take a big step towards getting my life back. I read a novel, magazines, papers, listened to music, caught up with friends online, took walks around the hospital, went to the hospital cafe, and generally savoured the sudden disappearance of the disease. When I got home, I cooked meals, met friends for coffee, and built things up day by day (though it really didn't take long to feel like I had recovered).

When I was in hospital after surgery # 2: I had to wait until day 3 before my intestines woke up again. Those were tiring and not entirely pleasant days. I didn't feel up to reading (to be honest, those days are a bit of a blur anyway with the pain killers - I dozed a lot). Once my j-pouch was working, I picked up very quickly. I listened to music, read, napped, took walk around the ward, etc. When I got home, I took things more slowly in terms of building up stamina. I got out a few times a week for walks/coffee, I went to church, watched TV, read, accompanied my wife on lots of school runs... There was always enough to do.

I hope you get on well and are pleased with the end result. I love my j-pouch.

thank you everyone for your responses and stories! I appreciate the comfort of knowing how many people have already gone through this. I think the biggest thing is me, being used to working 13 days on, 1 day off, of between 8-12 hour shifts a day, having to get used to just... not working for a while. It'll be a big change. It'll be hard for me to not return to work full force!

Thank you! I feel a bit better now!

I was like that too. If I did learn one thing after going through what i did was to stop and smell the roses and enjoy the "me" time. Have me new perspective. Work will always be there.