Ileostomy Pain and Size Concerns

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krkb01

Hey all. I'm just over 2 weeks post ileostomy placement. My question is, how long should it take before I stop feeling it? I was told in the hospital it would get smaller, but as far as I can tell it has not.

CrappyColon

Hi! What do you mean by 'feeling it'? Your stoma itself doesn't have nerve endings. You can barely touch it and it will bleed, but no pain from the small intestine/stoma itself. I measured mine once a week, but I was also seeing an ostomy nurse at least once a week for 8 weeks because I had a lot of issues. Someone else can jump in and correct me if I'm remembering wrong, but I thought around 6 weeks post-op is when it gets to the size it will be. What type of ileostomy do you have?

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krkb01
Reply to CrappyColon

I mean around the stoma site, it's like itchy, but severe at times, not so much at other times.

I think they said temp loop ileostomy. I'm kinda new to all the terms.

Also, the output, will I continue to feel that? Or does that sensation go away with more healing?

Sorry if all these are dumb questions. I just wasn't educated very well beforehand......

CrappyColon
Reply to krkb01

No dumb questions when it comes to learning to live with an ostomy.

I had a loop ileostomy. Can you still see the stitches? If the stitches are still there, they can be pretty annoying. Do you have irritation from leakage on the skin or are you doing ok in that department?

When you say feel the output, do you have pain or is it just being aware of contents coming out of your stoma into the ostomy bag? Over time, sometimes you will feel certain things still, and I am not sure if it's you paying attention less because you become so used to it or the sensations are actually less. I had pad thai once and only once since having my colon removed, and I had huge pieces of bamboo shoots come out of my stoma and didn't feel it at all. When I saw the contents in the bag, I was like, how the heck did that get out?!

You're 2 weeks into this, so don't hesitate to ask for help. Post a question like you did, and people will be sure to respond. :)

Jodie

krkb01

Yes, I can still see the stitches when I change the base of it. I think my home nurse might be cutting the hole too small because my stoma changes size still.

I've only had leakage once, but it was from the base where the adhesive just came up too much. It hasn't leaked from the stitches or anything.

The feeling I'm referring to is just the stoma action. Lol, like when it outputs, it kinda tickles. I'm assuming it's because it's still new, and my nerves aren't used to it yet.

 
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CrappyColon
Reply to krkb01

Are you doing any of the changes yourself yet or is the home nurse? I had the home nurse come once and after that, I was like, never mind. When I saw the ostomy nurses once a week, it was a drive to Cleveland Clinic each time, and I know I'm partial, but except for this one guy, they really have the best WOC (wound, ostomy, continence) nurses. Once the stitches fully dissolve, that will help with the irritation. If your home nurse doesn't typically do ostomy care, it can kind of be a crap shoot with who you get. What type of surgery did you have? I saw the abbreviation in your profile, and I could probably google it, but nah. Was it a surprise surgery for you?

TerryLT

Hi Krk, welcome to the site. Oh, what fun to be a newbie! The little tickle you feel when output is happening will probably stay with you. It's perfectly normal. I don't feel mine all the time and sometimes am surprised to find a lot of output has accumulated, where other times I get this sort of tickle or itchy feeling before or while it's happening. It actually doesn't bother me, and it's an almost pleasant feeling. Yes, your stoma will change size, but its final dimensions could be several weeks in coming. Not sure about the itching around your stoma though. You said it's sometimes severe? Is the skin around your stoma red or broken? Do you have an ostomy nurse you can consult with? The hospital should have set you up with one, so if you don't, I would call the surgeon's office and ask about that. Ostomy nurses are great. Have you learned to change your pouch yourself? It will take some practice, but you will get there. One of the things is getting the size of the hole just right, not too small, but not too big either as then you will get skin problems from output. Could that be what is happening?

Terry

CrappyColon
Reply to TerryLT

Terry, didn't Julie (ostomy nurse) do a post somewhere about this feeling/sensation?

Hisbiscus

The itchiness could be from some small leaking around the stoma or an allergic reaction to your bag adhesive or other products used. As for the feeling the stoma when you're going, yes, I feel that a lot. It's not all the time but it happens.

krkb01
Reply to TerryLT

I think it might be too tight, my HomeCare nurse is coming tomorrow, I'll get them to cut the hole a bit bigger. I have not changed the flange myself yet, but I have changed the bag a few times. Tomorrow will be the 5th time in 2 1/2 weeks that the flange and bag will be away from stoma. The last time (Monday) there were still visible stitches, and it was red around the stoma site. Nurse said it was all looking normal. But like I said, I think it got a bit bigger, the stoma, since last time. So it's kinda squeezing itself I think, and that's where my irritation is coming from. Hopefully.

krkb01
Reply to CrappyColon

My HomeCare nurse is still doing the flange changes, I'm not sure about that myself yet.

The surgery I had was LAR (Lower Anterior Resection) done robotically. Where in 3ft of colon and hair my rectum were removed.

And temp loop ileostomy was placed at the same time.

No, it wasn't a surprise, as I completed 28 sessions of radiation, oral (Capecitabine), then 8 cycles of FOLFOX6 before having the planned surgery.

CrappyColon
Reply to krkb01

Someone in another ostomy group told me what an LAR was. So you're basically saying you went through a lot and then had this surgery. May I suggest asking the nurse to let you do all the work of doing the change while she's there if you need the help? Every time you do a change-including the flange it will build your confidence.

Axl

Hi K

I seem to recall maybe three months before the stoma shrinks and settles on its final size but of course it can change somewhat down the road for no reason. I can also still feel the output exiting at times but not that often. Sometimes after I change the bag I can get a stinging sensation for a little while, don't really know why. You have a way to go yet before your body settles after the trauma it has been through. You don't mention leaks or any irritation of the skin from output so you are doing well. Don't overthink it, let your recovery come to you. And as that troublemaker Jodie said, there are no dumb questions...

Axl

CrappyColon
Reply to Axl

I prefer the fun one over the troublemaker, but the fun makes it so I've gotten really good at getting out of trouble.

TerryLT
Reply to CrappyColon

Yeah, she may have done. I can't remember what her MAO handle is to look her up though.

IGGIE

I used to get a lot of irritation at first, and it turned out to be because I didn't remove all the hair where the base plate fits, and as I moved, it was pulling on the hair, and it's very annoying. Make sure you shave that area really well. Regards, IGGIE

krkb01
Reply to IGGIE

Fortunately, that's not something I need to worry about. I'm not a hairy guy, and 4 months of FOLFOX took care of any hair around that area. Lol

krkb01
Reply to Axl

I was getting a bit of irritation from output on my skin, turns out though, I was cutting my wafer hole too big. I've since cut it smaller just to fit around the stoma itself, and lo and behold, the irritation stopped! Who knew!? Lol

IGGIE

You should also fit a seal before the wafer, talk to your stoma nurse. She will tell you what to use. I use Welland seals but all the companies make their own. Regards, Iggie

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