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Son having surgery tomorrow....

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Ulcerative Colitis
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Posted 1/5/2011 4:18 PM (GMT 0)
Hi,
My 21 year old son had the first part of the ileostomy surgery last July due to severe and unmanageable U/C. He was having 2 flares a year that each lasted for several months, and always landed him in the hospital. The last one was last May and by July he had to have his colon removed. Well he has gained almost 50 pounds, and looks and feels amazing. He has been wearing the bag since the surgery, and as you can imagine at 21, he is ready to get his life back, find a girlfriend, etc., and does not want to live with the bag forever. He is scheduled this Thursday to have the j-pouch constructed and have the connection completed so that he will be able to get rid of the ostomy bag. My question is to anyone that has been the caretaker, parent, spouse, etc., what should I expect when he gets out of surgery, and is able to come home. The doctor tells us to expect him to be in the hospital at least a week. Any response, help would be appreciated...

Posted 1/5/2011 4:35 PM (GMT 0)
Hi Luvfraz, awesome news to hear your son is doing so well and has regained his strength. Some of our jpouch folks pop in here to give some great advice, but you also might want to check the ostomy forum, or jpouch.com. Many of our members that had UC have gone on to have the surgery with terrific results. Good luck to your son! Let us know how he did, we always love to hear positive news!


Posted 1/5/2011 5:03 PM (GMT 0)
He should be up and about fairly quickly with this surgery. Adaption to food might be difficult and frequency will be high in the first six weeks. Get him some calmoseptine ointment and try to encourage him to limit sugar, carbonated beverages as sugar will make things looser and carbonation will cause problems with gas. In time he should be able to eat or drink anything.

Sue
Posted 1/5/2011 6:43 PM (GMT 0)
Thank you so much for your reply. I am reading a lot today about the frequency he will be going to the bathroom at first. I am sure he isn't prepared for that, as he has be living with an ostomy bag for the past 6 months or so, and hasn't had to "run" like he did with the U/C. It seems like he will be back to doing that, and it seems like it mirrors what U/C flares were like for him if there is a lot of going to the bathroom. Is it more like a leakage thing, or will he have cramping, etc...?

Thank you again for your replies.

Posted 1/5/2011 7:00 PM (GMT 0)
Gas pain post surgery may be an issue but it does resolve. I think the biggest thing for him to understand is that there will be a new learning curve while his system learns how to do its job. Patience and knowing to expect improvement in periods of weeks, not days, is key. Leakage and cramping, and urgency may be experienced BUT it will improve. Also, stick to a low fiber diet and look for foods with longer transit times, usually protein based.

Have him walk as much as possible. Walking speeds recovery and if there are gas issues it helps with that too!

Sue
Posted 1/5/2011 7:41 PM (GMT 0)
Thanks again Sue. I have been reading where some post-op patients use a bidet to cleanse the area because so much wiping can cause a lot of irratation. Sounds like a good idea to me, and I have been searching on line for where I can buy one to attach to the toilet in his bathroom. We just found out that his surgery is at 11:30 tomorrow morning, so I will post after it is over and let you know how he is doing. These message boards are such a source of comfort to me as his mom and caregiver through this ordeal..

Thanks again.

Lisa

Posted 1/5/2011 8:25 PM (GMT 0)
Hi. My 19 year old son went through this a year ago this week. Everything that Sue has said is what I would also tell you.

Wiping or not keeping the area really clean are the major issues for creating a sore bottom. My son, Dillon, used premoistened, flushable wipes and that really helped. We also put a hand held showerhead in the shower and he used that when his bottom was sore and then let his bottom air dry. It is REALLY important to always use the cream (we just used Penaten) after EVERY bowel movement (which can be a pain). With doing all these things he was fine.

Leakage is not a problem for everyone. Dillon had a little leakage the first few nights in the hospital but as soon as he started eating , the stool thickened up and this was no longer a problem.

As Sue said, after feeling so good for the past while, he will find it hard to go through the recovery phase. He really needs to look at improvement from one week to the next and not daily. There will definitely be up and down days. With time the good days will come more and more often. For the first couple of months Dillon had a lot of down days, but I cannot tell you how well he is doing now.....he has about 6 quick, easy BMs a day (mostly formed..which amazes me), no pain, no urgency and depending on what he eats will sleep through the night. If he eats or drinks during the evening he will be up about one time during the night. However, he pretty much sleepwalks into the bathroom and then is back in his bed within a couple of minutes. Some mornings he does not even remember if he was up or not.

We will be thinking of you both tomorrow. If I can be of any other help do not hesitate to ask,

Cathy
Posted 1/6/2011 4:42 AM (GMT 0)
Lisa - good luck to you and your son. As long as he is prepared what to expect then he can measure at the end of every week some improvement that will encourage him until the entire process heals. As a caretaker too I know the anxiety you have and have had. It will be so great for you too when all that worrying is behind you both.
Posted 1/17/2011 11:29 PM (GMT 0)
Tike:My son had the surgery when he was 21,he is now 32 and doing well. Since you are young you will bounce back real fast. Don't be too afraid,once you get rid of your colon your health will improve.

Luv as I said above my son was also 21 and had a bag for about 3 months, he could not wait to get rid of it,and takedown was a piece of cake compared to the colectomy. I might note his pouch was formed at the time of the colectomy,so he was out in under 72 hours from takedown. As advised get all kinds of butt cream,I understand ILex is very good for butt burn.

Old Mike
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