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ileostomy reversal

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Ostomies
yes or no to reversal of ileostomy?
yes - 71.4% - 10 votes
no - 28.6% - 4 votes
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Posted 3/27/2010 12:33 AM (GMT 0)
hi am new to site but would like some advice.Had atotal colectomy and ileostomy 5 weeks go still cannot walk as i also go celulitis all over my stomach.A 5 day hospital stay turned into 2 weeks and i was in hospital with a blockage just the other day.Am still passing blood the back passage thought it should  have stopped by now l am supposed to get a reversal in a few months but haqve heard a lot of negative things about it was wondering what other people have had done am 47years old soon so am no spring chicken please let me knoew could do with some help in deciding what to do thanks Bindi 63 
Posted 3/27/2010 8:13 PM (GMT 0)
Had my ileo surgery in Oct 2007. Was told it would be 3 months til I could have the reversal. Went and saw my surgeon in Feb 2008; said all was well and to let him know when to schedule it.

When I was in the hospital for the initial surgery, came down with a staph infection. White cell count went into the stratosphere. spent 3 days in ICU on massive antibiotics. no strength. couldn't walk; spent 30 days in a nursing home getting my strength back and could almost walk more than 50 feet by Thanksgiving. So I wasn't really all that anxious to go back into the hospital for the reversal.

Asked my surgeon whether or not it could be put off for a while; so I could regain my strength. He told me yes, as the J-Pouch was fine, it was up to me when he should connect it..

You set the calendar, not your doctor. Sounds like your complications need to heal before you see the inside of an Operating Room again Give your body time to heal Give your mind time to heal also. The stresses of UC are as bad as the physical symptoms.

It's been 2 1/2 years now and I still am not ready for another trip to the OR. When I'm ready I will. but I'm not in any rush to do so... Get well first is my best advise to you. both body and mind. Take care :)
Posted 3/28/2010 12:02 AM (GMT 0)

Like Wade says, if you decide on the reversal do it on your time.  Some wait a year or more; others like me, jump at the first opportunity.  There is no right or wrong way to go.

Sue

Posted 3/28/2010 3:16 AM (GMT 0)
thanks Wade for your reply my husband has said he totaly agrees with you about waiting he can see what i am going through now.When i went to the doctor initially he said 3 months and i would be a different person and no more medication well he was right about the different person bit still cant do anything for myself and is frustrating. am seeing Doctor in 3 days the way i feel i cannot go through another op so soon but good to know someone else waiting also for reversal.For the past few weeks i have felt so alone like noone understood but thankyou for your reply and Sue i am glad yours went well.I had UC for 15 years was in and out of hospital all the time and was on pentasa,imuran.predsol enemas,warfarin for clots in my lungs,colifoam rectal foam,b12 injections fortnightly,hospital every 2 months for iron infusions as am allergic to sulpha and numeous hydrocortisoneand prednisone i dont miss the meds but i am not strong enough to go through too much more now am on painkillers and valium for pain now so will see what Doctor has to say and let you know what i decide but thanks again for your replys has given me food for thought
Posted 3/28/2010 3:28 AM (GMT 0)
I have decided to wait a few years b4 having a j-pouch surgery. Mostly b/c i want to have more children (or child - we'll see ;) ). And my surgeon said that was just fine.
But, the farther i get from my original surgery, and the more comfortable i get with 'lefty', the harder it will be to put myself through more. I, too, had complications, and this is always in the back of my mind. It was scary a few times.
If i were you, i would wait to be in the best health, b4 i considered going through more.
Posted 3/28/2010 4:33 AM (GMT 0)
thanks Chassity for your reply hope you have your child (or more) dont hesitate if you are able to have more i have 3 they are all grown up i wouldnt be without them they keep you going and your husband keeps you grounded and cared for will let everyone know what i decide thanks again
Posted 3/28/2010 9:35 AM (GMT 0)
bindi I went back and re-read your original posting.. The last thing that still bugs me is the drainage out of my derreir' which is something I wasn't aware would happen. After everything got re-plumbed inside me. I presumed it would all go into the bag out the stoma. I was unaware of the enzymes that leak out and I asked my surgeon about it. Yes at first it was a bloody mess... But as your body heals that will go away.. I still have to wear a pad so I don't mess up my clothing.

Also your strength will return. Seemed like it was forever and a day for it to come back.. was strange in a way that I was laying in my bed in the nursing home and my body just switched back on.. after being traumatized first by the surgery .. then the infection.. and all the weight loss. I found I could get out of bed and start walking on my own. It wasn't far. and I was unsteady. but I was walking. Eating helped of course. and once I started walking the recovery pace was pretty quick. A month I was almost back to normal and got to the point that I didn't think about it after a while. and the rolling walker I got. well I use it now for carrying groceries from the car to the kitchen pantry these days :)

The hardest part was leaving the nursing home (although I was so glad to get out of there) and going home. There weren't the attendants there. You've got to rely on yourself. Yes my wife was home and helped me. but she wasn't trained for any of this and was also stressed out from my being sick for a year. She did what she could of course.. and things got back to normal. Normal now to the point that all of my UC illness is a memory.

Oh by the way I'm 55. And this was my first experience of a real illness other than the flu.. Hopefully you will be fine. it just takes a little while :)
Posted 3/28/2010 2:02 PM (GMT 0)

Bindi,

You can meet others who waited at www.j-pouch.org  It took about a year for the fatigue to leave me.  Do try and get some exercise everyday, even if it's just walking to the end of the street and back.  I think exercise is key to recovery.

Sue

Posted 3/29/2010 5:57 AM (GMT 0)
thanks Wade for what you wrote makes me realise there is light at the end of the tunnel the hardest part for me at the moment is that i am so used to being on the go all the time that now i cant do anything and i feel helpless and i have to force myself to eat.I lost 12kg straight from the op which i think made me weak enough but now am losing more am to scared to eat because of blockages but am seeing my Doctor tomorrow and have 2 pages of questions (dont think he wil like me very much when i am finished)but i still need to know so much but you have helped me immensely and i will let you know what happens
thanks again Bindi
Posted 3/29/2010 5:59 AM (GMT 0)
Hi Sue
thanks for the info about the website will look it up and see how i go hope you are ok as i said to Wade am sweeing Doctor tomorrow so will see how we go and will let you both know thanks for caring
Bindi
Posted 3/29/2010 5:37 PM (GMT 0)
Will doctors generally tell you a specific amount of time in which they believe that you will be able to have the reversal done? I meet with the surgeon on Wednesday to figure out if I am going to get an ileostomy or colostomy, and the nurses have told me they think that it will be temporary, but they haven't given me a time limit. Also, do they have to do a lot of tests to figure out if you are able to be hooked back up?
Posted 3/29/2010 6:06 PM (GMT 0)
Ask your surgeon what his/her time frame is. Every surgeon is different and also patient health at the time of surgery plays a role. For ileostomy reversals the standard is 3 months but my surgeon does them at 6 weeks.

Sue
Posted 3/29/2010 8:00 PM (GMT 0)
Oh, well that is nice to know! Thanks :)
Posted 4/4/2010 7:29 AM (GMT 0)
Hi am back sorry took so long not been too good and Easterkept me busy.Wel saw Doctor and he said he was surprised i wasnt better than i was he expected me to be running around(or so he said)he also compared me to a 21year old girl who had her op at the same time I wont repeat what i told him i mean she is more than half my age as well as not being as sick.I now have to go back in 3months to check muscles and things but he said he thinks maybe not for 6 months.I t6old him i would tell him when i would be ready and you know what he didnt say a word.Think i stunned him hubby had a bit to say too so i think he got a shock.He also said to see a chiropractor about my back pain(in the hospital he said there was nothing wrong and it was just muscles) saw one the other day waiting for results but he said i couldhave a small crack in the lower part of my back because of op dont also told me all the meds have given me brittle bone so that made me feel just great.Am also having lots of leakihg at night through the bag as the stoma is shrinking any ideas please i dont know how to stop it and its not much fun.ell hope you all had a great easter catch up later
Bindi
Posted 4/4/2010 10:38 AM (GMT 0)
Your stoma should be almost done shrinking. Can you describe what it looks like? You may need convexity to help with the leaking.

I was 40 when I had my proctocolectomy and I have to say, even after all the other surgeries and knowing what to expect, I had a VERY long recovery:( It was a good 8 weeks before I felt like I could get back to 'normal'. I figured I'd be out and about within 3 weeks, like before, but it was a much harder recovery...I blamed age!! But I really think it was the scope of the surgery.

Your back pain is probably a result of the surgery...you had a major organ removed and everything has to find a 'new home' as well as you need to regain strength in your core. You are probably walking a little hunched over, too? Many of us experience that...if your chiropractor doesn't find anything don't worry too much right now. As you get further along in your recovery you will find relief:)
Posted 4/7/2010 4:22 PM (GMT 0)
Bindi63,

Couple of thoughts here.

First you say you were quite sick going into this surgery. It can take months to feel "good" afterward. My son, due to being very ill at the time of surgery, had only his colon removed in the first step. His recovery was slow but steady and took about a month. However, he is only 18 and had less for his body to contend with since his pouch was not built.

His surgeon would not build the pouch for 4 months...she said it takes that long for the body to completely recover. After his pouch was built and he was given his loop ileostomy he had numerous issues with this ileostomy. My understanding is that loop ileostomies are notoriously problematic. You mention blockages and leaking. This just adds to the difficulty of your recovery.

I think you just need more time to let your body heal. I assume you were on prednisone which makes healing so much harder. I agree that you should be the one to tell your surgeon when you are ready for another surgery but keep in mind that the reversal will be so much less of an insult to your body than what you have gone through. Also, considering you are having issues with the loop ileostomy, when you start feeling better you might be very happy to have it gone.

Just to make you feel better...my son was so ill for two years, had numerous complications with surgery, and had a lot of issues with the loop ileostomy but he is now 6 weeks post his reversal and is feeling GREAT.

IT is so hard, but you need to be patient, let the body heal and things will get better.

All the best,
Cathy
Posted 4/16/2010 12:00 PM (GMT 0)
Thanks for replys my stoma has shrunk to a 19 which my nurse says will probably be about it but now i have an ulcer about 2mm from stoma which is just another set back chiropracter found twisted right hip and pelvis out of joint but i also have osteoarthritis in hips and starting all through the back he says it is from all the steroids over the years and my bone are very dense so i have to be careful of falling I still cant walk lond distances and even the nurse has told me to stick with the wheelchair for a little while longer and we will start an exercise regime when i feel a bit better she thinks it could take another couple of months but i should be feeling much beter and be able to start to do things again.Was so excited that i didnt need help in shower the other day at least that is someting i can do for myself even though have to use shower chair.Had a few days feeling sorry for myslf but i guesss we all get like that am getting better mentally just physically now would be great thanks for your replys much appreciated Bindi
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