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Surgery 3 weeks ago - Ileostomy and Mucus Fistula
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Date Joined Feb 2007
Total Posts : 10
Posted 3/24/2007 8:45 AM (GMT -6)
Hello and hope you can help!
My Ulcerative Colitis got the better of me and on 1st March I had my first operation - to remove my colon. I now have an ileostomy and a Mucus Fistula as my rectum could not be removed due to the inflammation. My surgeon therefore is performing a 3 stage operation process with me. The second stage will be to commence reconstruction - build a j-pouch when hopefully the UC in my rectum will be in remission. The third stage will be to remove the ileostomy and put things back together.
I am getting to grips with my ileostomy but it seems no matter what time of day I eat, my stoma is extremely active at night from 9pm through til morning. I am eating no later than 6pm and have my main meal at lunchtime and just a snack at 5.30pm/6pm. My stoma isn't every active during the day tho it does operate! Does anyone have any ideas on how to turn this around?
I know it's only been 3 weeks since my op but I have an ache behind the stoma area - where the bag sticks really. Is this normal? I am sore everywhere else on my tummy too but predominently around the stoma area.
With regards to the Mucus Fistula, how do I know if the UC is in remission? Being as the rectum makes it's own secretions, it is continually giving out mucus with some blood mixed in. I am having no mucus or blood expelled from my back passage just from the Fistula. I'm guessing there should be no blood present to give a sign that it may be in remission??
Being as my operations are staggered, is the operation to build the j-pouch normally
open surgery or keyhole?
Do hope you can help, thanks in advance.
Pentasa Suppository 1 each night
Predsol Suppository 1 each morning
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Date Joined Sep 2006
Total Posts : 2527
Posted 3/24/2007 9:22 AM (GMT -6)
I dont know what to tell you about
the fistula at your rectum when I was in surgery they found a fistula linking my small bowel to another section of small bowel so while in there they took that out as well as my appendix. At that time I only had a resection. I wasnt feeling right so 1 week later (February 19th), so yes I am new to all of this as well, the doctor went back in drained a 500 cc abscess as well as removed a third of my colon since it was so impacted with stool and enemas prior to the Sx werent helping enough. At the end of the week he informed me that he was going away on vacation and one of his assoc would be caring for me while he was away. I had yet another abscess so they drained that by way of CT scan. The following day they gave me an ultrasound since the output from the drain was minimal they were looking to see if the drain was up against the intestine wall etc, after they looked at the ultrasound they didnt see much so yes another CT scan which revealed there was little left there so they pulled the drain and the radiologist aspirated 5cc of fluid that was left there.
I am in fact noticing more and more that my pouch is active more at night either that or I just think that since I have to wake up each time. I do however notice I have more gas at night time than during the day. Make sure you are drinking more than you did prior to the surgery because you lose a lot more fluid with the ileostomy since your colon absorbs about
99% of fluid therefore keeping you hydrated.
I dont think there is a way to control your output but maybe I am mistaken. When it is active overnight is it all watery or is the consistancy that of yogurt? I tend to skip breakfast since when I wake up (except the last few days I have been taking in more sodium to help retain fluid) I feel awful. AS the day goes on I feel better. For lunch I eat canned pasta, mashed potatoes, ramen noodles, regular pasta which I always add mozzerella to the sauce or soup. At dinner time I may have some of the items I eat at lunch but occasionally I will have chicken pot pie (21g of protein), meat tortellini (22 grams of protein in that), and lately I have been craving burger king so I have had that a couple of times since the surgery. Make sure you are getting lots of protein since that will aid in the healing process. also you may want to take zinc supplements they also aid in healing I have CD not UC but CD depletes your body of zinc and I am unsure if UC does that as well.
My stoma area is still very tender as well however I am hooked up to a wound vac since my incision became infected. The infection is gone but this vac speeds up the healing process as well. When the visiting nurse comes to change my wound vac dressing she also changes my ostomy flange and bag since they are so close to each other that they overlap. This intensifies my pain around the stoma. I actually take dilauded 1 hour prior to her coming and I also take 2 oxycontin a day and the doc has me on nerve meds to help with the pain assoc with the dressing changes of my wound vac. I am concerned that when I am allowed to return to work that my stoma will be bumped many times (I work as a veterinary assistant).
My doctor wants to wait 6 months before reversing my ileostomy I just hope I wont have as many complications as I did when I had my last surgeries done.
Dx with Crohn's 1987, symptoms as early as 1984.
Temporary iliostomy February 19 2007
Ovarian cysts dx 1994, migraines dx 1996, allergies (including food allergies) , oral allergy syndrome (sligtly different than true food allergies), Astham dx 1984, Gall Bladder removed 1999, Inguenal hernia Sx 1987
Protonix 40 mg, Nuerontin, oxycontin, dilauded, Folic acid 1 mg, Vitamin b12 1000 mcg, vitamin b6 100mg, Diflucan 100mg, vitamin A, Multivitamin, Elavil 100 mg, Zanaflex 4 mg, asmanex, singulair, foltix, probiotics
As needed: Albuterol inhaler, relpax, nebulizer (albuterol ), have an Epi-pen but hope I never have to use one.
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Date Joined Mar 2007
Total Posts : 33
Posted 3/24/2007 10:18 AM (GMT -6)
Thanks for the help you have me on my forums, im also from the UK. I like talking to people in the same situation as me, i dont know why but it cheers me up a little. It just seems like a huge nightmare to me all these operations and having a stoma. I have only just turned 17, i was in hospital over birthday which wasnt nice :( how old are you? (not being rude or personal)
My stoma is also extremely active overnight and it does function during the day but mainly after meals. The output is mostly always watery and i dont know why because i eat a mixture of things and have a very balanced diet. Im not really sure how to turn this around. Just trial and error i guess.
Its been nearly 3 weeks since my operation and i do to get a pain just left of my stoma, but this is usually when it is active, i also get very sore skin around the stoma area, because the output gets under the adhesive and stays there and irritates the skin. Im having some trouble keeping the stoma bags on because they just want to peel off. This makes me paranoid that there goin to leak and smell at an inconvenient moment. Have you got any tips on how to stop the bag from peeling?
I think the j-pouch surgery is
open surgery and the 3rd operation is done all through the
opening in the abdominal wall where the stoma is but dont take my word for it. Im soo scared about
having the next 2 operations, ive been told i have to wait for around 8months to a year to construct the j-pouch :( are you scared?
I hope you get well and get your strength back soon and keep in touch, its good to have people to talk to that are in the same situation. Im looking forward to getting my strength back and getting back to college and playing football again, i just want my life back.
Post Edited (Firthy) : 3/24/2007 10:26:34 AM (GMT-6)
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Date Joined Mar 2005
Total Posts : 19
Posted 3/27/2007 7:59 AM (GMT -6)
Hi there i'm uk too and new ileostomist from bristol. My ileo is always on the go day and night with about
2 litre output and nothing seems to slow it down. maybe time will work for us both and good luck with the next phase of surgery
chip girl x
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Date Joined Mar 2007
Total Posts : 33
Posted 3/27/2007 10:01 AM (GMT -6)
I just got ur message and hope ur doing well :) thanks again for helping me and answering my questions. I am using products from dansac and i am getting used to them now, my stoma nurse gave me some flange extensions and they work and now im not paranoid about
the bag coming off. But today my stoma has been working non-stop and alot of air :( i was at college and i had a huge balloon under my top lol bit embarrasing. but im not embarrased about
the bag, just glad im alive :) i used to get the leaking from inside out and it does irritate my skin, i try warmin the glue up for like 3-4 mins then after its stuck, massage around the stoma and make sure its stuck down good around there. It also matters how big th whole in the bag is cut, if its too big your more likely to leak.
I havent joined the IA yet, yes please can i have the address details :)
I couldnt imagine recently having this operation and geting used to all this and also trying to raise and look after a 3-4 year old. i bet thats hard, fair play to you.
Im still worried about
the next operation, ive been told i have to wait around a year or when ive finished my college course which is good because i can concentrate on getting qualifications. My first operation was a nightmare to, my epidural only worked on my right hand side, so i felt everythin on my left. when i woke up in recovery i was screaming nasty swear words lol. Then the nurse asked me what was the pain scale on 1-10 :S i told her to guess. I will have the next 2 ops, i jus want to be normal again. I Know how you feel, no1 really does talk about
the good things, always the bad and theyre the things that seem to stic in my head and wont go away :( if the j-pouch dosnt work, its a permanent ileostomy :( all this is a nightmare, but i just think about
how glad i am to be here with my family, friends and my girlfriend and i can do all the things i love. Same with you, ur still here with your little man, doing the things you love.
I wouldnt wish this upon anyone, on saturday i heard my little sister tell my dad that she had a little bleeding on the paper after she went to the loo, she said the exact same words i did to him just over a year ago when i 1st started getting symptoms of UC and i just broke down in tears, i dont want my little sis goin through UC and this.
Thanks a million for being here to talk to, really helps me having people like you to talk to :) hope you get back to yourself soon, if you need anything just ask.
Take care of yourself and keep in touch
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