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Crohn's Disease Forum » Your Story » All up in the air


08-03-2015, 04:03 AM   #1
imok
 
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All up in the air

I'm 31yrs and i have what they think is an anal fistula. I started to notice a small pea size lump last July on holiday and immediately thought the worse so I asked numerous nurses and doctors what it could be they all reassured me it was a swollen gland and i will go down. A few months went by and the lump was getting bigger but it felt really deep under the skin about the size of a grape but the skin was not irritated or red. So i went back to the nurse and she said its a swollen gland from and infection and it will go down once the infection is gone, but I didn't have any signs of infection she reassured me it will go away. Within a week of that visit i was finding it uncomfortable to sit walk as the lump was solid but still the skin wasn't irritated. One morning there was so much pressure it pops while on the toilet... kinda lucky in a way since it broke into my bowel rather than through the skin. So i went straight to the doctors as you could imagine the shock of it all . Within a couple of hours after that i was in a surgeons off filling out papers for surgery to clean out the infection . So in January I the day before my operation i had to do a bowel prep Wow guess most people here know how fun that day is lol. So I had the operation to see if it would be an abscess and to see if there was a tract for possible anal fistula. Well Anal Fistula that is what i have now, I did google it ..... worse thing i could have done as my hole is nothing like the images i found. So i guess I'm dragging this on a bit so I will get to my frustrations
1: No one really listened in the beginning.
2:the first surgery caused a hole that is constantly draining.
3: It's been 7months of looking after it knowing i need a 2nd operation to clean the infection out from the first surgery.
4:2nd cleaning and a Seton operation has been postponed twice and they can't give me another date yet.
5: knowing i have to wait 3months with a Seton in before the 3rd operation can be done to see if they can even close the hole.
I feel like my life is all up in the air at this moment and every time i try and talk about it no one knows what it is and never herd of it. I'm just on here to find people that can give me a realistic ideas of what to really expect over the next year with surgery and recovery. Hopefully there are young women that have a similar thing as me that can give me some support since i haven't been diagnosed with anything yet.
08-03-2015, 09:49 AM   #2
Kero
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Sorry to hear of the pain and frustration you are dealing with. Best thing about this board is the amount of support and info there is here! Don't ever feel as though something is TMI (too much info). We are here to answer all your questions to the best of our abilities
08-03-2015, 04:00 PM   #3
Caitlin84
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I'm so sorry to hear about how frustrating everything has been. Its really hard when you know something is wrong and medical professionals just blow you off. I'm doing the stricture thing, not the fistula thing, so I can't personally relate, but I know there are threads dedicated to fistulas. I hope you find the support you need here. Keep us posted, hang in there.
08-03-2015, 09:11 PM   #4
imok
 
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Thanks for the support so much I will keep you posted on the progress just knowing that I am not alone in this is helpful

08-04-2015, 05:49 PM   #5
Madhu
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My husband had a tough time with fistulas too. He has 2 of them and for a very long time, we thought it was skin coming out because he was constipated. The first GI we saw said it was an abscess and put him on Flagyl which my husband hated with all his ability. It made him throw up all the time and not eat even a bit. Worst antibiotic ever, but hey, perks of Crohn's It was only after our specialist GI ordered an MRI, we found that it was actually a fistula. He went in for a surgery to place a seton which was okay only to find 4 days later that it was missing We were actually laughing when our GI told us it's not there. So we met the surgeon again and she couldn't find it either. Meanwhile she found another lump and suspected another fistula could be coming up, so she wanted to open and check both fistulae. So second surgery in just a week where we found the old seton was indeed inside but was pushed deeper because the Crohn's had made the muscle so friable. And there was also a second fistula, so one more seton in. Sorry for the ranting, what I'm coming to say is, after all those hardship, terrible pain physically for him and mentally for me, he started Remicade 2 weeks back and the fistulae started healing almost immediately. Knock on wood. Now he is free from pain, no drainage, so stopped wearing gauze and extremely happy about it. I hope you get some closure soon with your fistula and you can be happy too. My good wishes your way
__________________
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
08-05-2015, 03:57 AM   #6
imok
 
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Thank you so much for your support and information. I just got a call from the hospital and they are putting me in for surgery this Friday (2 days) .

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