ileostomy - considering first stage of j-pouch surgery- need advice on time needed to recover

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evs 89
New Member


Date Joined Nov 2007
Total Posts : 16
   Posted 10/25/2008 10:35 AM (GMT -6)   
Hey guys i've been keeping track of posts on here for a while and find them very informative, but now would like some advice on my own situation, would be very much appreciated.
 
Im currently at the stage of considering having the first stage of j-pouch surgery done. However im in my second year at uni away from home, and i don't want to lose any time at uni due to getting behind with my work.I want to have the ileostomy and then stick with that until i finish my full three years at uni and then have the takedown. I have been suffering quite badly from UC for the past two years since i was diagnosed, and none of the drugs really kept me in remission for long. I,ve got around 3 weeks maybe slightly more back at home during the christmas break and am considering having the ileostomy done then.My GI has told me that you have to have several hospital admissions prior to the surgery.What would this be for?And from your experience do you think i could recover sufficiently in the three or so weeks i have off to be able to return to uni?I don't mean complete recovery but enough so that i can get about etc.
 
I'd love to hear your general time period admissions in hospital and recovery stories after that?I hope you can provide me with the info i need to consider having the op in the christmas holiday, as im sick of the pain and suffering from this disease.
 
 
Thank You :-)
 
Matt

spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 10/25/2008 11:01 AM (GMT -6)   
I'm not sure why you would need hospital admissions before surgery, maybe a few appointments to do a pre-op physical and talk to your surgeon in detail about the procedure. Your hospital may have a different protocol, so make sure you find out exactly what you need to do beforehand.

As for recovery, I was in the hospital for 6 days. When I came home I still needed help getting up from bed and sometimes the couch for a few days, but after that I was able to do everything on my own, although still with some back pain from the hard surgical table and not moving around for so long. The key is to walk as much as you can without wearing yourself out, you'll recover much faster than if you just sit on your butt all day. So I would say that 3-4 weeks after surgery I was ready to get back to life.

Also, what I've done in the past is I've taken my finals a week or two early so that I can get a little extra time. When I had UC I tried a lot of alternative treatments, and one of them involved going to the Czech Republic to drink mineral water. My mom booked the trip for a week that ended up being my finals week, so I just told all my teachers the situation and that it was for my health. They had no problem letting me take the finals early. Even an extra week would come in handy for your recovery. Also, if you talk to the teachers you're going to have after the break and tell them it's apossibility that you'll miss the first week of classes I'm sure they'll understand as well.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


Roddiesgirl
Regular Member


Date Joined Oct 2008
Total Posts : 262
   Posted 10/25/2008 11:05 AM (GMT -6)   
Hi Matt! I had surgery on Sept 23 (ileostomy) and found that for me, it took a couple of weeks before I was able to even go for a drive in my car (hubby driving).  It's been a month now, and I am doing quite well on my own.  I am still very careful not to lift anything or exert myself in any way, but other than that I am managing quite well.  You are younger than I am (54) so I am sure you will recuperate even more quickly than I.  Just be careful after surgery and remember to be patient with yourself. Best of luck to you!! :-)

98jambos
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/25/2008 12:33 PM (GMT -6)   
I had the J Pouch for some time and found that diet has a MASSIVE effect on function.
DON'T LET ANYONE TELL YOU OTHERWISE.

Three best tips
Avoid wheat and milk and your insides will produce much less mucous and things will function better.
Drink LOADS of water
Use re-hydration salts regularly. Especially during the hotter months.

Hope this helps

98jambos
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/25/2008 12:39 PM (GMT -6)   
Also - the recovery takes more than 3 weeks. a total colectomy (which sounds like what you are having) is pretty invasive.

When you do go to have the j pouch built, research the surgeon. ask them how many they've done.
It is not a simple op.

Don't be scared though. Read the Lance Armstrong book!!! ;-)

Good luck - I'm sure you'll get a good result.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 10/25/2008 6:12 PM (GMT -6)   

Bratcat had her step 1 surgery at the beginning of the summer after school ended. She was up and about within the month but still weak and tired. She would have had a hard time getting back into the school routine at that time. Around 10 weeks she really began to feel more like her old self again. She goes for her reconnect surgery in 16 days. She plans to return to school after Thanksgiving.

Can you wait until school is out in the spring?


--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds
Step 2 scheduled for November 10
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 10/25/2008 6:45 PM (GMT -6)   
This also depends on whether you're having the surgery laproscopically or open. open surgery extends recovery time. I had mine laproscopically and although I've never had open surgery, I'm willing to bet I would've taken a lot longer to heal.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/25/2008 7:40 PM (GMT -6)   
It depends on how well you are going into the surgery and if you are on prednisone, that makes a BIG difference. The only thing i can think you may need admissions for pre op is if you have very low blood and need transfusions. probably though they are talking about meeting the Et nurse and doing the paper work and getting the blood work and all that super fun stuff!
I was supposed to go home five days after surgery then a totally random fever showed up so i ended up being six days. i was pretty much useless for the first week home, i could get myself to bed and to the bathroom and all that good stuff, get a drink microwave something, but just doing those things wore me out! when i stopped taking the pain pills i perked up faster, i also was on pred when i got out and was supposed to be weaning off it, but i just couldn't do it anymore and stopped it! which affected my recovery time i am sure, however once i quit taking it i felt better. i had to go back in two weeks after surgery casue i got dehydrated, not a big deal, a few hours at the ER with some saline, and felt much better then.
I doubt that you are gonna feel much like going back to school three weeks after surgery. For one thing your back is probably gonna hurt like crazy and that will make it hard to sit in a chair like a normal person. Also, that soon you will still be having alot of gas andmore output, it will thicken up over time and the gas will pretty much go away, so don't freak out and think it will always be like that!
anyway, whatever you decide i wish you the best of luck!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/25/2008 9:12 PM (GMT -6)   
Matt,
 
I would give yourself more than 3 weeks to recover from ileostomy surgery. My stoma took 10 days to start working, which kept me in the hospital longer than expected. Plus, once it started working, I ended up severely dehydrated and had to stay in the hospital for another 10 days.
 
Once I got home, I was weak and had to rest while my body was healing and be patient in getting my stength back.
 
If you're ready to have surgery, I would schedule it for Christmas break, but be prepared to possibly have to take some more time off in order to fully recover.
 
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


evs 89
New Member


Date Joined Nov 2007
Total Posts : 16
   Posted 10/26/2008 2:07 AM (GMT -6)   

I would love to wait until the summer when my year at university ends, but im in a pretty constant flare at the moment so i think my GI is worried about me completely obstructing.I am in the process of talking to my tutor about leaving a week early if i hand in all my assignments then and then maybe having a week longer afterwards which would give me 5 weeks. You may be right about a hosp stay before surgery because of my blood levels.I had to stay in for four days over summer and have four lots of blood as my haemoglobin went down to 7, and they put me on iv steroids.

Can you explain to me how the procedure is done laproscopically(sp)?is this a better way to have the surgery?if it depends on pred use then ive pretty much been on and off pred for the past year and a half, and have been stuck on 40mg for the past month or so.

Another question after surgery do you see a specialist about your stoma every month or so?or do you just continue to see your GI about your progress?

 

Thanks for all your replys, it gives you more confidence when you get advice from the experienced :-)

Matt


petsitter
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/26/2008 9:24 AM (GMT -6)   
I have had a j pouch for 20 years. My son has a k pouch after a failed J.
Recovery does take a good year for total results.
Diet is important and I agree with 98 jambos. But I do not agree with drinking tons of water, you can flood your body and die. Water does not rehydrate or replace any needed supplements you lose. Gatorade and other bottled drinks have too much sugar.
Stamina is an electrolyte/trace minerals replacement, mix with 4 oz water, comes in flavors, once daily, 2.5 g sugar. Worth a try.
I am always willing to help anyone. I have been a success story and never had pouchitis either.

petsitter
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/26/2008 9:32 AM (GMT -6)   
I have not encountered many drs who will do a j pouch for crohns. Most end up with chronic pouchitis.
I would question any dr who says it is ok.
Some do k pouches with crohns but depends on the location of the disease.
I am open to e mails for anyone wanting more info and I have tons.

spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 10/26/2008 12:03 PM (GMT -6)   
In the 7 years that I had UC I was in remission for a total of 6 months. I was on steroids at least half the year every year. This time around I've been on steroids since January, so almost a year now (I had withrawal after I tapered Prednisone and had to take hydrocortisone to taper more slowly). I tapered my prednisone down to 20mg before surgery. My surgeon said that he wanted the dose to be as low as possible without my symptoms getting too bad. If the colon is really inflammed it makes it harder to do the surgery, but of course being on Prednisone isn't ideal either.

Laproscopic surgery is where they use a few small cuts and a camera to see what they're doing rather than a huge 8-10 inch cut.

I continue to see my surgeon for follow up care; I've only spoken to my GI once when he called to check in after surgery to see how I was doing. I do see the stoma nurse fairly often because I have skin problems under my bag. I see her pretty much every week or 2 so she can keep an eye on all the holes/tears/irritation I've developed in my skin. I think being on steroids is a big factor in this as it makes your skin much thinner and more likely to tear. You'll probably meet the stoma nurse before your surgery, or at least before you leave the hospital, so she can teach you how to change the bag and she'll let you know how often you need to see her or another nurse close to your school. I had my surgery an hour away from where I live, so I see a different stoma nurse than the one I met with before surgery.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 10/26/2008 3:08 PM (GMT -6)   

3-5 weeks probably isn't enough time...even if you PLAN on laproscopic surgery, ANYTHING can happen since the doc's don't know what will happen until they get in there.  Unfortunately, pred use will be one of those factors...sometimes a three step is necessary because the body cannot hold staples to perform the pouch. 

Can you take a semester off?  Or, at least let your prof's know that you might be a few weeks late getting back and if they will let you work from home with someone's notes, etc...  I myself took a semester off, and I am glad I did!  I don't want to scare you, but everyone is different and you should definately take that into consideration when making your decision.  Good Luck, I hope you find relief soon.


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 10/30/2008 6:06 PM (GMT -6)   
For me, I had my surgery on Feb 12th, was out of the hospital on Feb 16th (without any complications). I was back to work on April 14th (8 weeks later). I say allow yourself 7 weeks for recovery. It took 4 weeks before I could even sleep on my side. 2 more weeks before I could even stand upright. And 2 more before I could even walk around easily without getting tired in 30 seconds. You'll be extremely tired, or tire very easily 3 to 4 months post op. I would take a semester off and recover. It would be worth it in the long run. Plus, sleeping 14 hours a day for 8 weeks will allow your mind to recover as well.

I just had my colon removed in my first surgery, similar to what your considering. My j-pouch surgery will be on Nov. 20th, off another 8 weeks, then a reversal surgery a month later, and off another month. Then I should be fine.

Hope all goes well.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
11/20/2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 10/31/2008 7:00 AM (GMT -6)   
Six weeks of recovery is the average for the first surgery for jpouch. However, many of us returned to work and school before that. You cannot predict your recovery so I would count on six weeks minimum for planning purposes. Don't let people scare you about what types of foods you can eat. After 6 months of recovery from step 2 I was eating all food groups and still am 8 years later. Everyone is different, some continue to have problems with foods but most of us don't or eat them anyway.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

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