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Fellow Ostomiers in Boston?

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Posted 9/7/2010 8:57 PM (GMT 0)
So about a year and half ago I posted on the UC cite saying I was going in for a c-scope, but little did I know I wouldn't be home for a whole 3 months. I ended up having a perforation and got a subtotal colectomy. After multiple complications, Nerve damage, Compartment syndrome, rehab and finishing school I finally have a moment to think about my future. I am considering the J pouch and would love to know how life with a J pouch compares to the ostomy.

Out of curiosity how many of you are in boston? Who is your doctor in boston and would you recommend him/her.

PS: If anyone in the Boston area is having a hard time getting supplies I can help.
Posted 9/7/2010 11:00 PM (GMT 0)
Hi gotguts,

I am from the western part of Massachusetts. After suffering irreparable damage to my rectum and colon; and damage to my small intestine that could be repaired (all result of what turned out to be an unneeded surgery out here in western mass).

It took me 13 moths to see 11 docs at 7 hospitals nationwide as the damages manifested. The ONLY place that dared deal with this much damage confidently was the Lahey Clinic Colon and Rectal Department in Burlington, MA. The surgeon I had has since retired, but they are all very good.

They do all these procedures there so give them a call. My current surgeon's office tel num is 1-781-744-3760. If you call, they could set you up with someone who does the J-pouch specifically.

If you have an ileostomy, can you please tell me what you eat. After 3 years I'm still trying to wrap my head around diet. (Don't get me wrong, I'm lucky I CAN eat, but am trying to find a diet that is workable for me. I seem to fill fast, then feel hungry all at once. Thickening foods thicken too much, thinning foods make the effluent too watery.) A CT enterography did not indicate any adheison regrowth (so far anyway, so that is good news.) But still looking to find out how to feel as well as I can. SOunds like you and I have a LOT in common. SO glad you posted.)

Rosemary
Posted 9/8/2010 12:54 AM (GMT 0)
Hi Rosemary,


Nice to hear from you. I have been with the Ileostomy for over a year and half now and its been up and down. However, it is something I know what Im getting, but with a J-Pouch Im just afraid it could go either way. I have been seeing doctors in the city I will probably get a couple more opinions before doing anything.

With the food, I try to maintain a similar diet to what I had when I had the UC and thats what works best for me. I just avoid the dairy, gluten, fat, coffee, Alcohol. I also notice that the consistency changes during the day, which I associate to keeping the stomach empty for too long(over night) I try to eat smaller meals or little things during the day to fill the void. Please keep in touch and hope you progress well.

Best
Posted 9/8/2010 2:02 AM (GMT 0)
Gotguts,

Thanks for the diet tips. Do you eat solids separately from taking in liquid or do you eat and drink together?

Also I FEEL like I'm REALLY bloated and I'm not, it feels like a heaviness above the stoma but no peristomal hernia.

Feels like I just want to blast gas right out of that stoma. BUt gas does pass as does the effluent. Could that feeling be from what I eat? or going too long without food (gas build up.)

I had an xray done that showed moderate amounts of bowel gas but nothing suggestive of obstruction. And a CT enterography that showed all bowel open wide (I had to drink contrast to distend the small intestine). Plus so far so good, So as near as anyone can tell, there's no reason I should feel this way.

A person on here (Lizzie) had a K-pouch (I guess different from a J-pouch; and she had horrid complications and had to go back to the ileostomy. We are all praying for her; she's been down a bad road. BUT that's not to say that all pouch patients have that experience. As far as I know, she isn't yet well enough to get back to posting.

I wish you well and will try your diet tips.

Rosemary
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