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Crohn's Disease Forum » Your Story » My fistula journey to date... Looking for support!


11-12-2015, 09:58 PM   #1
kel3333
 
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My fistula journey to date... Looking for support!

Hello,

I have had a recurring perianal abscess since July. The first time it was drained I was in the ER as I had no idea what it was and that experience was worse than childbirth! From July-sept it came back 5-6 times (can't even remember anymore). My MRI in sept showed a transphicteric fistula had developed. I met with a number of surgeons and chose one who is the chief of the colorectal dept and whom I have complete faith in. He performed the seton placement one week ago today and told me I should expect to have mild discomfort (after initial few days) but that within a week I should feasibly be able to continue my regular activities... Let me start by saying I am a mom of three children 4 and under, so aside from all else, that is the most challenging as I don't want them worrying, mainly my oldest, but also I fee badly not being able to do everything like I usually do. Additionally, I am extremely active... I run about 15-20 miles weekly and love to work out, it keeps me centered in so many ways. I have found that in only one week of not working out I have gotten very down and just don't feel like myself at all. I am worried about the road ahead as I know I have a bigger surgery to deal with and its all overwhelming to me...
I joined this group because while I have wonderful people in my life, including my husband, no one has any idea how this feels physically or emotionally.

It feels like a mental mind f*ck at times because I will begin to feel well and then hours later I take steps back. Today I moved the seton around and pushed the knot out which get good at first only to turn into terrible pain an hour later! I pushed it back in so here's to hoping it'll feel "better" shortly!

Also-- when did you find you were able to sit down comfortably? I am still laying on my side or propped up on one side?

Lastly, I am surprised to read how many of you have had setons in so long, God bless you!!! I despise this thing!

I apologize if this seemed incredibly negative, I have just fallen into a bit of a slump, of which I know I will get out from, but also wanted to provide my full experience to welcome any and all advice and input!

Sending you all positive energy to perfect health!

~ Kelly
11-12-2015, 10:57 PM   #2
ronroush7
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Welcome. I have a question. At any time, when you had the many abscesses, did they put you on IV? I had an abscess in 1992. When they drained it, they only kept me overnight. My wife, with tears in her eyes, begged them to keep me longer. Because of insurance, they didn't listen to her. A week and a half later, I was just as bad as before. This time, they kept me for a week with medicine by IV. I ash you the best.

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11-12-2015, 11:22 PM   #3
kel3333
 
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Hi there,

Thank you for sharing with me and sorry to hear you have been dealing/struggling since '92.
I was never put on an IV nor did I ever stay overnight after each drainage... I'm surprised you stayed a whole week your second flare up, what was the reason? I was put on antibiotics one of the times but other than that, no meds.

I had ulcers in my colon back in 2007 and IBS, however in the last 6 years I have gotten all of that under control. My most recent colonoscopy looked normal and did not show signs of crohns but my surgeon wants to delve deeper to be sure and is reviewing my biopsies from 2007 as well as my surgical report from an appendectomy as I guess sometimes crohns can hide near your small intestine?

I have so much to learn on this all.
11-12-2015, 11:29 PM   #4
ronroush7
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They felt that the amount of medicine they gave me by IV was stronger than what they would have given me by mouth and wouldn't have been effective.

11-13-2015, 12:28 AM   #5
Devera
 
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I feel for you, Kelly! Hope you start to feel normal soon!

With my first setons, I ended up going back to my surgeon a week later, they were just so painful. I have two fistulas with the same entry spot, so the setons would also twist around each other. That was irritating my sphincter, causing it to spasm. She put me on diazepam, which didn't really do much for me, other than making me not give a c**p about the pain. It eased after three weeks. For my second round, I felt okay after a few days, despite the setons being in the same place as the first time.

No need to apologize for being negative, we can all relate to that! Fistulas sure can mess with your mind and bring you down, healing is a long and slow process. Best of luck to you!
11-13-2015, 09:41 AM   #6
kel3333
 
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That makes complete sense... I think I have blocked out that day actually because as I read your reply it came back to me that they put me on a morphine drip and somehow I forgot lol!!! It helped with the pain but not enough!
11-13-2015, 09:45 AM   #7
kel3333
 
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Thank you for writing to me and sharing your story... did the diazepam act as a stronger pain med, is that what it is? I hesitate to take those bc they tend to constipated and then I also can't drive and Lord knows I have to take my kids to school every morning when my husband isn't home... My 4 year old asked me today why I was waddling like a penguin!
I keep maneuvering this horrible seton hoping for mild normalcy but have try to feel that, I'm worried I'm irritating the area more.

This is pretty embarrassing but I have no shame left at this point... Last night after my 3rd bath of the day I was in bed and felt lots of fluid coming out, I ignored as assumed maybe it was bc I had moved the seton a bit, a few seconds later I was absolutely soaked and I think I was peeing without knowing it???? My fistula is not near my bladder as far as I'm aware so this worries me, has anyone dealt w this?
11-13-2015, 04:04 PM   #8
Devera
 
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Diazepam is a spasmolytic, was supposed to make my sphincter relax. I doubt that it did. No direct effect on the pain. And yes, not something you're supposed to drive with.
11-13-2015, 05:24 PM   #9
Nym
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Hi Kelly,

thanks for sharing your fistula story. Three kids under four! ... you don't want to sit down anyway, right? I was told the same by my surgeon - normal washing, return to activities. All lies as far as I'm concerned. It is now many yrs since my 2x abscess/fistula surgery and only in the past 18mnths or so I am sitting without second guessing myself ie flopping into the car, doing seated yoga etc. The damage to my spine from leaning to one side is now being corrected by a corrective chiropractor.

My seton was silk and when it rotted out I left it out. I used a sitz bath loaded with salt, then applied lots of coconut oil and a numbing rid ointment. Mine got blocked after I binged on ginger. The pain was such that I thought it was another abyss forming at first. After I cleared the blockage the entire area felt greatly improved (turns out ginger has many healing properties) and really hasn't looked back since that point.

I wish you a speedy and painless recovery.
11-15-2015, 01:24 PM   #10
earthshine
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hi Kelly
I am in a similar situation as you. Colonoscopy and tests are negative for crohns but I have a fistula. Began in March
I also noticed pelvic floor weakness/ incontinence after surgery.

Turns out for some of us the area will tighten the muscles, in a way to guard and protect. Maybe more evident initially after surgery.

I saw aPT for Few weeks to help learn to relax the area. She told me not to do kegel exercises as it would make it worse sense the area is so tight.

I have also begun doing more yoga to relax the area also.

I hope this gets better for you but seeing a PT that specializes in pelvic floor / incontinence even a couple times to learn breathing exercises can help.
11-15-2015, 01:26 PM   #11
earthshine
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[QUOTE=ronroush7;

Ronroush7
Did your abscess heal on IV antibiotics? I was on tablets but didn't resolve the issue.
11-15-2015, 04:05 PM   #12
kel3333
 
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Nym thank you for your post and honesty. That is very interesting about the ginger and coconut oil, I definitely prefer natural aides to all of these meds, ugh.
I was wondering about potential consequences of leaning to one side, not surprised you are having to get that corrected now, what a pain honestly. How soon after the initial seton placement did you return to yoga (non-seated poses)? I am anxious to run again... I tried last week and ran through some very sharp pains and I paid the price with two days of excruciating pain.
I spoke with my Dr yesterday about muscle spasms I was having and he told me I could use diaper rash cream (of which i have tons laying about w the kids) and that actually was quick to help... in this conversation he also told me he reviewed my tests and feels confident I do not have crohns which can only help me during this treatment plan I guess. He mentioned possibly doing the next surgery sooner than expected now that we know I dont have that but I am interested to hear how quickly as I thought this needed time to drain? I see him tomorrow so I will find out.

Thanks again and wishing you good health!!!!
11-15-2015, 04:35 PM   #13
kel3333
 
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Thank you for your advice, I will definitely look into that, did not expect adding an additional problem post-surgery ugh!
11-15-2015, 04:36 PM   #14
kel3333
 
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I was put on antibiotics only one of the times it has flared up and no they didn't help at all!!!
11-15-2015, 05:36 PM   #15
earthshine
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Please keep in touch on how it works out for you. Though I have no clear evidence of crohn's in testing, Dr has put the suggestion you there to consider remicade. i am reluctant.
i am trying to look into alternatives (ie hbot, kshar sutra, etc)
would you mind private messaging me the name of your doc?
wondering if a second opinion from him / her would be of benefit .
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