Anyone who had/has temporary stoma because of fistulas?

[Jimena]

Title tells it all

My butt is so painfull that i allmost want teporary stoma, so my bottom can heal. After the colonoscopy i was 4 days without BM and my butt was so much better! Now when i go to bathroom once a day, it's so sore again and sitting is hard because of the pain.

I see surgeon 10.11. and they decide do i need some kind of surgery. I'm scared that the surgeon poke my butt with something, because it's so sore. Last time my GI put finger in my anus and that hurts so much, i cried and blood just flow in my thighs

Mu small bowell is infllamed too, and i do feel little ill.Tomorow is a work day and i'm just wondering do i go to work or take a sick days. I feel like a loser if i stay home

 

[Spooky1]

i'm the ultimate loser, Jimena. i can't work due to health. i miss out on everything, lol

sorry to hear you are in pain. sometimes it helps to sit on a piece of foam cut into a horseshoe, or eve loo seat, shape. i expect like me you find the loo a comfortable place to sit.

i've been having fingers up my bum since i was 12. specialists surprise me with whats going on up there. half the time it was poorly but i didn't know. i tend to have crohns mouth to terminal ileum, but my large colon is painful and has been for 9 months, and will any doc listen? no. they just don't, they don't feel the abdomen any more either. they seem to have given up on that. there isn't even an examination bed in consulting room these days.

do you take pain meds at all? i'm sure after examining you they will decide on the best course of action for you. i'm sorry if you miss work. but why go only to be sent home, or to make yourself worse with activity when exhausted and fatigued. you could get to fainting point too if you push yourself. sometimes rest is good for bad health, please remember that rather than making yourself worse.

best wishes

 

[Amylou]

Hi Jimena!!
I do feel your pain!! I had a temp ileostomy last month because of perianal disease!! Been having a nightmare with abcesses and a fistula since dec last year Ive been so sick!! Had some of my small & large bowel removed in the process!! I feel so much better now although still recovering and tummys still sore!!! My bottom feels like heaven now tho still get slight drainage from the fistula the setons keep that flowing!! Don't feel like a loser if you stay at home!! Gosh ive hardly worked this year this disease can realy hit you hard sometimes!! Ive learnt that this year!! But cant wait to get back to work now hoping to be back December Hope they get a good action plan in place for you & get you living more comfortably!! All best xx

 

[Jimena]

Spooky, sorry to hear that I was 4 years out of work before that, and now i'm scared that it will be ended up the same.

Amylou, do you feel that stoma has make your life much easier? I feel that it would make my life so much easier, because the pain down there is so hard, specially after BM. I have had one big wound in my buttcrack over year now, and this wound near my anus has been there about 5 months. :hallo3:

I take sick days from work. I'm so tired and stomach pain is there all the time. I'n no use at work, feeling like this. Sucks.

 

[Spooky1]

we all feel for you Jimena, yes we feel ill, its because we are ill. don't feel bad about taking time off work. perhaps you can ask the gastro people for a temporary stoma. have you tried Remicade? some people on here suggest it heals them very fast. i've not been offered that one myself and i had hideous side effects on humira after using it for several months.

best wishes

 

[Amylou]

Hiya Jimena
Yes having the ileostomy has helped my bottom loads I couldnt function properly the state I was in with the abcsess. It kept building up and bursting inside me the pain was horrendous!! I was ending up in hospital all the time!! Adapting to an ileostomy can be a challenge also. I had a bonus start tho because Ive had a temp ileo 8 years ago so knew what to expect. Anything for me was better than the pain I was in!! I was asking for a bag which was something I never thought Id ever do ASK!! Remicade was an option for me as spooky mentions but the surgeon and GI discussed it and thought the quickist way to relieve my pain would be the surgery route!! I would ask about remicade. Keep posted to how ya get on & good luck x

 

[Jimena]

Yes, the surgeon i see next week, is colorectal surgeon I don't think they offer me stoma at this point, but i would love to hear if someone have temp stoma because of fistulas. I'm just nervous to even think that they do surgery in my bottom and i have to go to bathroom like normal people. That must be SO PAINFUL. :voodoo:

My blood work show that i have low albumin levels, only 30, when they should be 36-54. I eat like normally, my weight goes down still. I'm little overweight so i'm only happy for weightlost, but i know it's not normal. I gain weight 40kg when i was on prednison for four years :eek2: I hate that medicine.

I have tried Remicade, i had 2 i.v and i got nasty eczema in my scalp. Then they started Humira, which i used 2,5 years and that work perfectly.

 

[bobbycable]

i was offered a temp stoma after my surgery when a fistula formed me having abit too much pride turned it down and thus doing this nearly resulted in me having a permanent one luckily i've pulled through but i have heard temp stoma's can work wonders

 

[Spooky1]

hi, Jimena,

is the bum any less painful today? Did you take time off work to allow your body to rest?

best wishes

 

[Jimena]

Hi Spooky!

I wish i could say that it's less painfull, but it's really not. My stomach is sore too, feel like my small bowell is on fire.

But something good too: I take sick days from work, i'm probably out of work since i see my surgeon, 10th november. I just rest and watch movies. Luckily i can eat,it cause me some pain but not so much that i would stop eating , haha :lol2:

How are you feeling today Spooky?

 

[Spooky1]

hi, Jimena,

i'm having one gross day!! i got pains in the intestinal areas that i haven't felt for years, since my 20's really. i'm on and off loo a lot and very sore bum too. no fistulas though, thank god. i haven't had those in the bum area for years either.

i think i'm over my very tearful morning, i sometimes worry that my thoughts fix too much on how bad my crohns has been and all that i missed out on. it does make me sad though. i need to get well somehow that i can join in with other humans rather than being in on my own 99% of the time.

thank god i found this forum. you all have made my life a lot more sane, thank you all

best wishes

 

[AnneMarie]

Hi Jimena

I had a temp colostomy done in March due to fistula. I have been having various surgeries over the past five years for the fistula and a new surgeon finally recommended the temp colostomy.

I would highly recommend it.

I found it really difficult to adjust, am still adjusting if I'm honest, but since being given the colostomy the pain has gone, my fistula is finally healing and surgeon is talking about removing the colostomy in the next few months.

Hope this helps.

Take care xx

 

[Spooky1]

hi, Jimena,

i'm having one gross day!! i got pains in the intestinal areas that i haven't felt for years, since my 20's really. i'm on and off loo a lot and very sore bum too. no fistulas though, thank god. i haven't had those in the bum area for years either.

i think i'm over my very tearful morning, i sometimes worry that my thoughts fix too much on how bad my crohns has been and all that i missed out on. it does make me sad though. i need to get well somehow that i can join in with other humans rather than being in on my own 99% of the time.

thank god i found this forum. you all have made my life a lot more sane, thank you all

best wishes

 

[Spooky1]

ooop[s how have i done that!!!!!!as i say, its one big bad day. but davids catz made me laugh

 

[AnneMarie]

The forum is really good for making you feel less "freaky". It's just nice to know that you're not alone and there are others who really do understand what you're going through.

 

[Terriernut]

I certainly hope that the surgeon does bring up a temporary stoma for you. Dont be afraid to bring it up. I had emergency surgery on the 22nd Dec 2010. You dont want that.

Stan saved my life, and I'm soooo grateful to have him. It may be temporary, it may be permanent. But even though I'm flaring a bit now, I assure you life has been alot better with Stan. A temp stoma could give you the time to heal up. It's not an easy surgery, but once you are recovered, you can get your life back.

May I ask what medications you are on at the present time? Are you on any biologics?

 

[Jimena]

AnneMarie and Terriernut, thank you for the answers!!! That really helps me :heart: I am going to bring it up when i see the surgeon. Nothing in my butt will nor heal when i go to BM normally, honestly, even i wash myself afterwards every time, theres allways bacteria down there. And it's get irritate because of toiletpaper and everything. The pain is horrible

I did take Humira for 2,5 years, and my GI stopped it last march, we wanted to try if i can make without it. Clearly i can't. That makes me tooth and gum proplems, so because of that i wanted to try if i can make without it. But now i want it back! :biggrin: They first decide if i need a surgery, and then start Humira again.

I was laughing my ass off when i first read terriernut's signature, and though that Stan is her son, who has born dec 2010 :biggrin::biggrin: Then i realize; Stan the Stoma

 

[chrissyinct]

I am new here. I first had an ulcer the size of an egg in my rectum in 2006. I have been developing fistulas off that ulcer repair ever since. In Summer 2011 i had a lift procedure. One half of it collapsed the other didnt so back to the OR in Jan 2012. I had no issues till May of 2014 when i realized I had another fistula. Since the first surgeon i had for that was 55 miles away i decided to try the one closest to me instead. I saw him in August of last year for the first time and he scheduled an exam under anesthesia and placed 2 Seton drains. Well let me tell you this, I have never in my life felt anything like this before. I was having constant drainage and had to start wearing diapers. I was prescribed Augmentin and Flagyl for like 3 weeks. Well in the time from the placement of these first Seton drains i made a whole new fistula below the other one and had to go back in to place a drain in that one. We are now in October. So it just kept draining and draining and I asked about antibiotics and he said no and "It's complex" blah blah. So that drain fell out. End of december he stuck 5 needles into my rectum and opened that abscess to allow it to drain. He then scheduled me for an Advancement flap for the larger fistula and to put a new Seton in the lower one. I guess I dont need to tell any of you how painful this all is. I am 52 years old. Everything i do revolves around my rear end. Even as little as standing to cook dinner the pressure is so bad it brings me to tears. I take 1-2 pain pills a day for this and they are giving me grief over that. Sitting here in tears as i write this because I am just so done with all this. I cannot live in pain and fear of having a bm. I am seeing a different surgeon on the 24th. My best friend is going with me. She dealt with him and me after this past surgery. I was sent home not even aware of my surroundings and unable to pee. And I am still having issues with that. I worked in hospital for 25 years. Why not culture this infection and find out what antibiotics will kill it or put me in the hospital. I am so tired of being in pain. I am just at my wits end.

 

[Jimena]

I am so sorry for you i knoe how it feels. I did have colostomy and thrn another colostony and got fistulas around that second colostomy so i knew ny whole colon had to go. I had ileostomy surgery 1 month ago. After two colostomys i now have ileostomy.

Seriously, stoma was best desicion i have ever made. I have had ptoplems with it but nit that kind of pain what it was eith my bum. That was so painful that i don't let anyone (doctors) touch my bum while i am awake cos i am traunatized. And i don't have any proplems there anynire! And no pain! I know stoma is scary thing but nothing like that pain.

Please hang in there!

 

[chrissyinct]

Thanks for replying, I cannot get this Dr. to even consider a stoma

 

[vik2017]

Hi

 

[vik2017]

Hi Jimena
Im new here, and I'm probably missing most of the conversation you guys had before.
When reading your post about the temp Stoma, I can totally see myself in most of the experiences related here
I had an abscess drainage last year,in August that eventually become a fistula. The first surgery I had to help to heal was a VAAFT(videos assisted anal fistula treatment).
Only felt good after the 2 first days, after that it become so painful that I found myself crying
Went to the urgency on the 24th of December, where I was give morphine to ease the pain.
The doctor prescribed me morphine tablets( 10mg) each to take together with paracetamol (2x500mg)...
I was on that cocktail during few days, until I went back again to the emergency on the 1st of January...
My colon specialist, told me that the vaaft didn't work so I had to go back to the operations room. Came back with a seton and feeling much better.
Not for a long time...
After few weeks, because the pain came back and it became swollen,, they found out I had another fistula. One more seton.
Since December already been in the operation room 7 times, because it's too painful for me to allowed them to check me without being to put to sleep.
Last week, my colon specialist told me that they were considering performing a temporary Stoma procedure, and its already scheduled for tomorrow the 22nd of May.

Sorry about all the info, but I really need to share my experience with you guys, you see, it help me a lot to read all your experiences and, might sound bad, make me feel a bit better to know that I'm not alone on this journey.
Hope you all feeling better by now. Thanks again for sharing your experience

 

[vik2017]

For those who had a Stoma, how's life going and is the anal fistula healing well?

Take care

 

[exit4]

I have a ileostomy to help heal my fistula. Had it done last year in July, my fistula kept getting infected and abscessing all the time, antibiotics did little help even with a seton. I still have the seton in fistula, the stoma did help my infections. I am now on Stelara and feeling better, hoping to keep getting better and at some point in the future to reverse ileostomy. The stoma surgery was not to bad - a lot less pain and discomfort now then living with infected fistula. Stoma is a challenge on itself - took a while to figure out what bags and barriers to use, how long to keep on till change, skin issues, etc.

 

[Bufford]

I had surgery that resulted in a temporary stoma, but after failed treatments and the complex nature of the damage done it became permanent. I was not too disapointed when I was told the news back then. Fast forward from 2001 and life is fine, I don't miss the pain and agony of passing BMs. It was torture on the toilet. I have not sat on a toilet in all the years and don't miss them at all.