newbie with a few questions

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New Member

Date Joined Oct 2010
Total Posts : 19
   Posted 12/21/2010 3:07 PM (GMT -6)   
Hi i got home yesterday from the hospital after 10 or 11 days in there after the surgery and I found this site about an hour ago, had been on it with my UC which led to the emergency surgery with a serious flare up that didnt react well enough to steroids and increased medication.
Firstly Im massively underweight at the moment 55.6 kg or just under 9 stone, Im 6"3 and should be about 80kg or 12 and half stone so my diet is aimed towards puttting on weight. Also its still fairly liquidy at times so have to keep my fluids up. And im im still tapering down the prednisalone at 15mg a day now.
Now the questions.
When i was in hospital the dietician said that drinking sports drinks (lucozade sport) was better then water for rehydrating my system, is all the sugar in these not going to keep it runny though?
i occassionaly get a kind of warm tingling feeling around the stoma, usually before it releases something, gas or excrement, is this normal?
when i changed my bag yesterday before i left with the stoma nurse i noticed that it appears there is a small gap between the stoma and the skin around it (allmost as if it might be able to move around slightly) it might not be deep though (I cant remember  confused  ) seeing as she didnt say anything about it i assumed it was normal but now Im not so sure, is it normal shortly after surgery for this to happen? it was swolen after surgery and did reduce quite fast.
Also there was a small white dot on the stoma itself that didnt appear to rub off, again because the stoma nurse didnt say anything i assumed it was normal, could of been a piece of dried on excrement maybe?(has been very yellow)
Last but not least the consistency changes as the day goes on, in the morning its quite liquidy but there is only about 100-200mls total, then around 2-4 its slightly more solid, prob about halfway to thick paste then around 6 it is a thick paste and during the night it is usually medium again, is this anyway normal or could it be caused by the times im eating, i.e not eating during the night so liquid in morning etc, or else when im taking my immodium tablets (not during the night).
Sorry about the long post and any help would be really appreciated.

Regular Member

Date Joined Nov 2010
Total Posts : 89
   Posted 12/21/2010 3:48 PM (GMT -6)   
Hi first welcome to the forum...I am 5 weeks out from my surgery and to answer some of your questions
1. I felt strange sensations when my stoma was outputing in the beginning i believe that will go away as mine did and then you will be checking your bag to see if you are even having any output.
2.I don't know about the gap hopefully someone will beable to help
3. that white dot might be the stoma sloughing off mine did but someone might know something about that too
4. at least for me the liquid then thick output sounds normal as mine is that but mine has settled on being quite thick so i drink a small glass of grapejuice to thin it out a little.

A question for you do you have an ileostomy or colostomy??? why are you taking immodium???
Well i hope this helps have a Merry Christmas and enjoy a new lease on life....Trixiemom
have loop ileostomy
diagnosed with colon inertia
2 1/2 weeks doing well

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 12/21/2010 5:53 PM (GMT -6)   
garanmoldu~welcome to the ostomy forum!

Once you start eating you will find that the weight will come back pretty easy. You could also supplement your food with protein drinks to gain a little more.

Yes, those sports drinks can cause an can cut them with water to still get some benefit without it running right through. You can also salt your food or eat salty pretzels or peanut butter crackers to help retain fluids.

I still get that 'warm' feeling once in a while and it's usually when whatever is coming out is liquid...I usually feel it when it gets to the part of my skin that touches the pouch. I don't have it right around my stoma, though, maybe there is more 'gap' than there should be because of shrinkage?

Is the gap around your stoma all around or just at the bottom? A loop ileo would have an opening at the bottom. I would run the question by your doctor if you are concerned...just because the stoma nurse didn't say anything doesn't mean its okay! Always ask!!! And, run the question about the white doc by your doc, too!

Yes, your output will vary based on how much Imodium you've taken and what you've eaten...mine is thick all day long now (unless I drink a coffee or something like that) so my guess would be that as time goes on you'll find it will get thicker. You might want to keep a food diary for a little while so you know what causes it or even how long you between eating to keep it consistent.

Don't worry about long posts...and post away when you have questions!!
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 12/22/2010 12:28 AM (GMT -6)   
welcome! ask lots of questions!

yes the sports drinks will increase output, anything with lots of sugar or artifical sweeteners will, that also includes juice, so be careful with that.
You are going to have a lot more output at first it will slow down over time.
weird feelings are normal, i still have them everyonce in a while.
i dont know about the hole thing
the white spot might be some paste or a bit of the wafer
and yes output changes drastically. sometimes mine is so thick i can barely do anything with it and sometimes its pure water.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

New Member

Date Joined Oct 2010
Total Posts : 19
   Posted 12/22/2010 5:00 AM (GMT -6)   
Thanks guys! I'm just happy to be out of the hospital for christmas, was in there for just over 4 weeks but out for Christmas :) yeah I even noticed a difference in the output yesterday and last night in that it was thick for longer which is good and I think it might just be my digestive system getting back into action and eating steadily through the day.

The stoma nurse is meant to see me again today so Il let you know what she says about the gap thing, and its just at the side I think, cant really see underneath the stoma it still protudes a few inches.

Trixiemom I had a ileostomy and I'm on the immodium because for the first few while it had been pure liquid coming out in very large amounts

Veteran Member

Date Joined Feb 2010
Total Posts : 720
   Posted 12/22/2010 11:35 AM (GMT -6)   
I had this start to happen about 10 days after my surgery. My stoma was separating from the skin around it just on one side. My stoma nurse said it was fairly common and usually the result of being on steroids and their affect on the body's ability to heal tissue. She packed some cottony stuff that is made of seaweed (Meglisorb) in the gap and told me to do this every time I changed the pouch until it healed. As it turned out, my abdominal incision popped open the next day all the way through the muscle layer also due to prednisone. I had to go back to surgery to have it fixed, and my surgeon restitched the stoma at that time too, so I never got to see how the seaweed stuff worked.

Not sure if this is what you have, but the nurse should be able to give you some advice.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

New Member

Date Joined Oct 2010
Total Posts : 19
   Posted 12/22/2010 2:35 PM (GMT -6)   
Yeah i was talking to my nurse earlier and she said ythe same, its steroids, she said its nothing to worry about and its nothing to worry about, didnt mention anything about putting anything on it though but im on a low dose at the moment and reducing quick enough too so thats prob why. Thanks
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