Struggling

For discussing ostomies that are intended to be temporary, and the reversal/takedown of such ostomies.
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LeeZ730
Posts: 3
Joined: 2015-07-31 20:30:51

Struggling

Post by LeeZ730 »

New ileostomy for about 5 weeks now. I have lost 25 pounds the stoma itself hurts constantly like it is being stretched out, I still can't wear normal clothes, and it seems like I can't keep up with the output. I was told to keep the bag for at least 5 more months through next round of chemo but am on the verge of going against medical advice and having it reversed. Please help
To Good Health
Posts: 1972
Joined: 2009-12-22 07:36:28

Re: Struggling

Post by To Good Health »

Welcome to this discussion group, Lee. Sorry to hear of your ileostomy problems. I had one for about 14 months before reversal. It shouldn't hurt all the time. Is it the tender skin around the stoma that is hurting or the stoma itself? When you say you can't keep up with output, do you mean that you have to empty the bag frequently? Have you seen a ENST nurse? (enterstomal therapy nurse) Some of them are very helpful.

I suggest that you post this in the general ostomy section as it gets a lot more traffic and, you should get suggestions a lot more quickly. Good luck. Don't give up.
Sincerely,
To Good Health
Chemo/rad Mar 07
APR/ileo May 07
Perm colostomy 2009
Perforated colon Nov 2013
LeeZ730
Posts: 3
Joined: 2015-07-31 20:30:51

Re: Struggling

Post by LeeZ730 »

The stoma itself hurts but the skin around it always feels tight and like it's stretching. It seems like every time I eat it goes right through me to the point I can't maintain my weight. The nurses come weekly just say it's all normal. I can't deal with this much longer.
btrenter
Posts: 2
Joined: 2015-10-04 21:56:50

Re: Struggling

Post by btrenter »

I am new to this site and am also struggling with my ileostomy-it was done a month ago during an emergency surgery. It leaks a lot and it hurts often. Thank you for posting your question. I will read the replies in hopes of gaining support and information.
beth
To Good Health
Posts: 1972
Joined: 2009-12-22 07:36:28

Re: Struggling

Post by To Good Health »

Lee, sorry I haven't been back here to read your response. I hope you have had an improvement in the last 2 months or you will almost be disappearing (due to weight loss). I question the nurses who say it is normal. Hopefully you have been to a doctor who can help with the weight loss issue. Food 'going right through' has been discussed a lot on the general site. Some folk have success with lomotil or an over-the-counter med whose name escapes me at the moment. All the best,
To Good Health
Chemo/rad Mar 07
APR/ileo May 07
Perm colostomy 2009
Perforated colon Nov 2013
highcountry
Posts: 3
Joined: 2015-02-07 09:36:15

Re: Struggling

Post by highcountry »

The water from digestion is removed by your colon, so output of your small intestine will be very loose. Did you have a large part of the small removed or just colon?
Emefaawo
Posts: 2
Joined: 2016-01-04 01:17:05

Re: Struggling

Post by Emefaawo »

Hello, I'm sorry to hear about your uncomfortablness, but may I ask; do you have UC, or Crohn's disease?
christy_1275
Posts: 2
Joined: 2016-01-20 17:08:04

Re: Struggling

Post by christy_1275 »

I am 9 weeks post-colectomy (emergency: there was a 5-cm abcess in peritonium) from a perforated diverticulum in sigmoid colon (have had IBS-D for many years).

My stoma is in a deep "crater" and not well placed; it's less than 1/2" from the suture line. Both of these factors have caused problems with ostomy bags.

In my 2-week hospital stay, the parastomal skin got very irritated because of the digestive acids, for which I have a new respect, pooling in them. By New Year's Eve, I was in the ER with blisters, ugly red bumps, and weeping blood. I thought I'd never heal--but I have.

Working with a wound-care nurse helped most of the problems, but my fecal output tends to be mush, and it stings horribly when stoma is active and when fecal matter impacts in crater. Today, I'm trying my first convex bag to see if it helps.

I suggest working with an ostomy nurse; they have experience of just about every problem we ostimates encounter.

Best wishes.
lisa1999
Posts: 10
Joined: 2016-07-01 11:02:07

Re: Struggling

Post by lisa1999 »

I agree working with the ostomy nurses or wound nurse and doctors are great options. in unusual circumstances like with deep creators or me with a inny stoma the convec products work great and decrease in leaks I have found. Working with nurses they helped to show me how to use the skin prep pads and powder to form a crust around stoma to help cut down on the blistering and bloody irritation. I hope all goes well foryou.
Goofeegutz
Posts: 34
Joined: 2016-07-25 13:21:25

Re: Struggling

Post by Goofeegutz »

Hi Leez730,
I'm way late to this post. I hope you have found some relief. I too suffered great weight loss with the creation of my temp loop ileostomy. I'm work with a dietician right now too help stop the weight loss or I will disappear. I'm already a walking skeleton!! I feel like things go through me too fast too but then they say most people always have liquid stools but how are we ever supposed to gain weight back! Have you ad any success with your issues? My skin issue is much better. I use a convex Hollister wafer/flange and an adapt ring and an ostomy belt. These helped push my flushed stoma out and my stoma nurse gave me some liquid Bandages for the raw skin under my stoma and these worked wonders!!
Dx UC Pancolitis '96
Colon removal (IPAA) w/temp loop ileo/May '16
takedown sched Sep '16
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