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Possibly heading for surgery unexpectedly need advice to prepare.

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Posted 5/19/2013 10:51 PM (GMT 0)
I am 48 am I too old for a J Pouch?

What preparations did you make before surgery? I feel like I am totally unprepared and I will leave the stove on when I go.

I am on Prednizone and they said if it does not work by next Monday it is off to the hospital. I think they might try IV steroids at the hospital and then do surgery if that does not work. Colon removal no J-Pouch.

Any heads up things that may help me prepare the best as possible is very much appreciated.

DX: UC was in remission for 3 yrs also have Fibro,Asthma,among many other things. Many allergies.
Posted 5/19/2013 11:04 PM (GMT 0)
There's no right or wrong age for a j-pouch. There are people in their 60s and even 70s who have successfully gotten j-pouches. It has more to do with your energy level and your overall state of health. It also has to do with how motivated you are to get one. Training a new pouch takes work and patience and some people would rather stick with an ostomy. Only you can decide if you're up for it.

What other meds have you tried besides prednisone?

Do you live alone?

The main things you will need at home after surgery are soft foods that require little prep (like eggs, toast, yogurt, applesauce) and to set things up at home so that the necessities are at "counter height" (it is hard to bend over after abdominal surgery).

The colectomy with end ileostomy surgery is not easy but it is much less intense than doing the j-pouch construction at the same time. That was my first surgery, and I was very sick at the time, but I was able to bounce back and go back to work after six weeks. It helped me to feel a lot better. Hopefully if it comes to that for you it will be similar.

Do you know if the surgery would be performed open or laparoscopically? If lapro is an option for you it is MUCH less painful and has a faster recovery period.

A lot of people will say to do research all about ostomies and stuff in advance... my personal attitude was that if you have to do it you'll do it, no use obsessing about it in advance. Make sure there is a WOCN at the hospital or nearby you can meet with who will help you learn how to care for your ostomy and give advice if you have any irritation or other issues.

Good luck
Posted 5/19/2013 11:42 PM (GMT 0)
I think Liz covered the basics ... I second having a good WOCN to help with the transition. And just know that if you do have the surgery, while you may have some initial pain and it can take a little to get used to managing the bag, you will likely feel better almost immediately. As many if us will tell you, I just wish I had done it sooner. So sorry to hear you're going into this as an emergency situation. Wishing you the best of luck - keep us posted.
Posted 5/19/2013 11:47 PM (GMT 0)
Thank you so much for responding we had some severe weather here so I had to get off for a little bit.

I have been on Imuran (developed acute pancreatitis) canasa,pentasa, entacourt ec, predinzone, remicaid no Humira I have run out of medicine except for methotrexate? But this came on sudden after 3 yrs of remission and apparantly is affenting the entire colon and small intestine. I have been so sick for the past three weeks.

I know the Dr said no J-Pouch I am too old. He mentioned I would see the surgeon I have no idea what is next after that it is all just so sudden. He did say if we wait too long he may have to do a colectomy.

I do live alone but will probably have help.

Thanks again so much this is what I really need and I will spend night and day studying. I just want to know what I am going into as I get into it.
Posted 5/19/2013 11:57 PM (GMT 0)
How much do you know about the small intestine involvement? UC can cause some inflammation at the very end of the small intestine called "backwash ileitis" but if the small intestine involvement is more extensive that would be a sign of Crohn's disease, which in itself is a contraindication for a j-pouch (at any age).

Is this a large teaching hospital? Will a real colorectal surgeon be performing your surgery if necessary? At this point I would say your odds of surgery are high -- methotrexate is not particularly effective at treating UC, sorry to say. The most important thing is to have a surgeon who is skilled and highly experienced at these kinds of surgeries. It should be someone who has performed hundreds of colectomies and ileostomies at least. If you can share your general location we may be able to recommend the best regarded surgeon in your area.

Finally, please make sure that your stool is tested for C. diff -- this bacteria can mimic the symptoms of a UC flare and it is treatable with antibiotics. The fact that you were in remission for three years up until a couple weeks ago and now you're on the verge of surgery suggests to me that there's a possibility that there is "more than meets the eye" to what you're experiencing.
Posted 5/20/2013 12:21 AM (GMT 0)
I'm curious as to why your doctor said you are too old at 48 for a j pouch. I was 41 when I had my surgery. I have done just fine. My uncle had j pouch surgery at 55. Age shouldn't have anything to do with it. It's if you are a candidate health wise that matters. Hey 48 is young these days, lol! Anyway, if surgery is in your future, you will need to consult with a top notch, highly skilled and qualified surgeon. That surgeon will be able to tell you if you are a candidate for j pouch surgery. A GI dr. cannot make that determination.
Posted 5/20/2013 12:25 AM (GMT 0)
There is no age limit for a j pouch. You just need a skilled colorectal surgeon with experience doing them. If you contact a local ostomy support group and tell them your story, they can match you up with someone who got a pouch around your age so you can talk to them. BTW I am 41 and getting my pouch next week - we are not too old!
Posted 5/20/2013 2:51 AM (GMT 0)
Unless someone has other underlying health problems (besides the reason for the pouch) diabetes, heart problems, obsesity, heavy bleeder, heavy pred use, etc...I can't see a reason why 48 would be too old for the surgery. The only reason I say that having other problems might be a reason is because it takes at least two sugeries and is more extensive.
To get ready try to get in the best shape posssible, especially strenghning your core. ask lots of questions, find out how many surgeries your surgeon has been done. Make sure your surgeon will make a stoma that sticks out and that you will get a good placement.
Good luck!
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