New on here-had ileostomy need HELP!!!

[diddi47]

new on here-had ileostomy need HELP!!!

hiya guys i am new to this and ive signed up mainly got this reason to find out if my problem i normal or not if any1 has had an ileostomy... i had al of my large bowel romoved but my rectum left in due to being on steriods and as of yet as i only had it done two weeks ago, there is no talk of the reverse as it was quite a severe cas also. I have had crohns/colitis for two years ad no medication worked. Anyway thats a small intro for you but my problem is.. today i passed mucus/blood from my anus..i got told it was normal for the first few days and i did pass blood twice in the hospita but not since. I was just wondering is this still normal or should i be worried and mention it to my surgeon? i was very poorly in hospital so having some complications also with my stoma healing, its very very swollen and the stitches wont stay attatched and my surgeon said hes not seen it happen before but is not worried(ive had it restitched once already) has any1 else had this problem? he says its because my body isnt strong enough for it to repair just yet i personally think its because my stoma is so swollen and heavy especially with mybag putting pressure on it nd when it gets heavy. Any1 that is occuring the same problem or had it and can just put my mind at rest or even let me know how your experience was thatl be great. thanks guys x

 

[Guest]

hi Diddi, & welcome to the forum

i think you should definitely mention the rectal bleeding to your surgeon.. although i wouldn't worry too much about it.

unfortunately it is normal in some people with stomas, to still pass mucus and sometimes blood from there, particularly if there's still some active disease in that area.. also it could be like your stoma - taking time to heal where they've stitched at the top of the rectal stump. but yes - your surgeon should know about it.

regarding the stoma, have you been introduced to the stoma nurse team at your hospital? they are fantastic with post-op care, and i'm sure will have seen this problem before, even if your surgeon hasn't.. the only advice i can give you is make sure you're keeping the skin directly round the base of your stoma really clean and dry, changing the appliance at the first sign of itching or soreness, clean it gently but thoroughly, and don't let your appliance get too full.

you can get bigger ileostomy bags, even if just for short term, which will encourage the contents to drop down to the bottom of the bag rather than stay up near the stoma.. but i think the best tip is keep it as empty as possible, empty it as soon as there's something worth emptying in there...

the stuff that comes out of the stoma is very harsh on skin, it's like a burning acid sometimes, which breaks the skin down and makes it very sore, and not a good condition for healing recent stiches..

we have quite a few members here with stomas, and we have a stoma subforum.. http://www.crohnsforum.com/forumdisplay.php?f=46

good luck, any questions just shout out.

 

[diddi47]

i was in a&e today as my scar is also coming open slightly in places which they said is due to still being on steriods it slows the procress down unfortunatly..but i did ask them about the mucus and bleeding and thankfully he said it was normal but yes i will still mention it to my surgeon as he should probably know my progress. And im trying to empty it as much as possible but on a night time it gets soo full even if i empty it in the middle of the night and i think my stoma is alot bigger and swollen than normal as i got told he pulled it out further so im not sure if the skin around my stoma is sore due to the pulling or as you said the waste that is coming out. I am under two stoma nurses though who are brilliant and my surgeon and stoma nurse said there not too worried about it coming lose but with it being sore it is slightly worrying and just abit of a pain knowing the whole process will be longer and slower and probably abit more of a struggle. But thank you i will be taking your advise and still carrying on emptying it as much as possible and cleaning it as thouroughly as i can x

 

[CDDad]

Good luck Diddi,
I remember very well how hard the first couple of weeks were. It was just 8 months ago for me, but now I can look back and cry. Just kidding, I'm not gonna look back and laugh, because those were some tough times.

My tummy scar also opened up a bit, but healed just fine. My butt incision still has some open places. Doc just keeps on working it every 2 weeks or so. They know me real well.

 

[diddi47]

hiya thank you.. yes it all seems very frustrating at the minute i feel like nothing is going right. He pulled my stoma out too far so i think thats why im having problems with that, its huge and so swollen and just wont stay stitched together so my skin is sore around the top were its pulling i cant even touch my stoma at the minute i have to be very careful when i clean it. And my scar is looking okay really just pussing in the odd place still i hope it all just keeps repairing im getting sick of going to the hospital to re-do things lol i was in that place for over 2months solid and ive been back a number of times and only been out two weeks its a nightmare at the minute! But i know i just have to be patient and positive..i suppose it has only been two weeks after all i cant expect miracles ay.
How much of your bowel do you have left then..or have they put it all back in..these names of the operations dont mean a lot to me lol
I was last on humira and it worked wonders for the first few months but then I got too poorly and it just stopped working so I had everything possible which is why I have to have the operation and now im not on any medication so far.
I hope that is it all for you and it stops now so you can just get on with your life

 

[CDDad]

I like to think I had the king of operations. Remove the colon, rectum, and anus. Kind of nice to take care of all the bad parts in one swoop, but no fun to recover from!

How far out would you say your ostomy is? Mine is about 3/4" or for you silly metric system users, about 2 cm, maybe a bit less.

So you have open red skin right where your stoma meets your stomach?

 

[Nyx]

Hi Diddi...welcome to the forum! I have a stoma too (his name is Oscar, after Oscar the Grouch) and he's very big! Mind you, I have a colostomy rather than an ileostomy (so he's made from my large intestine rather than my small intestine). I had 1/3 of my colon removed just over a year ago. The first few weeks after surgery are pretty tough! Not only are you trying to heal, you're trying to figure out how to best deal with this alien on your stomach! I can't really add any more advice than ding and Joe gave you, but take heart...your stoma will shrink with time (although mine only shrunk about 1/4" - he's pretty big at about 2" wide, by 2" deep...he sticks out alot), but once you get into a routine and it's all healed up, you'll hardly notice it's even there. Is yours permanent? Or can you get it reversed? Mine's permanent...and I still have to go for the rest of my surgery to take out my stump and close up my anus.

Good luck, and as ding said, please join us in the stoma subforum if you have any other questions/concerns

 

[diddi47]

Joe - the said in a years time they might take out my rectum..and although i am still passing abit of mucus every now and then if it doesnt cause me anymore problems and they think its okay to keep..if i can get away with it i really dont want anymore operations...this time has put me of big time because my bodies not completely strong enough to heal properly...and being on prednisilone doesnt help apparently that slows the process down. ermm i would say its about 3-4cm..i dont know why he pulled it out so much ...maybe because its on my left side?! (i have a tattoo on the right so asked if it was possible to have the left lol)....but its how fat it is that makes it heavy..and because my stitches have come away it hangs out that little bit more aswell so basically got inside flesh showing yes...and right round the edge is sore its not very nice at the minute im desperate for it to start healing. And im still having to lay on my back in bed and also lost 2stone (so i weigh slightly under 6st at the minute) i am very bony...so im very uncomfortable and ache so much as ive also got inflamation on my lower back due to my crohns. But i feel like im coping quite well considering lol

Hiya cindy...i call mine daisy. Oscar sounds just as big as Daisy and mines only a small intestine lol but its only been two weeks so im hoping it just shrinks very very soon so it can stop being heavy and pulling my insides out!! but my surgeon and stoma nurse reckon itl shrink to the size of an average ladies thub so il be pleased if it does..although the scar around it might be thinner and more noticable as its not stitched in place but aslong as it heals okay no1 sees it do they so im not worried about that when ive got a huge scar down my stomach. It is tough getting used to it when ive always been soooo against the operation for the reason of havingwhat i used to call it *a poo bag* because im very girlie love my tight tops/dresses etc...but its apart of me now..my little stump and id rather have that and my health than in and out of hospital and on every medication you can think of:smile:. I do think its permanant yes but theres been no talk at all of a reverse. But at the minute i see it as if within a year or whatever they tell me i can have it... if im used to my ostomy and have no problems...i dont know if id want it reversed because my crohns was pretty much covering my whole large bowel id feel as though theres more of a chance of it coming back again...so id want to know alot abot facts etc of it returning. Even though its a disease no1 seems to have too many answers too.
Am glad your positive with it all...gives me hope

How do i get to the subforum im quite confused with this website lol

 

[Astra]

Hi diddi
and welcome

I haven't had any Crohns surgery, yet! But wanted to welcome you, and hope you find some comfort and support here with us.
To get into subforum, click on the line that says 'Crohns Disease forum - support group and forum for IBD, Ulcerative Colitis' etc
You will find the stoma forum there under General IBD discussion
lotsa luv
Joan xxx