Fistula

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lillychamille
New User
Posts: 25
Joined: Fri May 31, 2013 1:02 am

Fistula

Postby lillychamille » Wed Jun 10, 2015 3:47 pm

I just don't know how to take this anymore! Finally saw a colorectal surgeon for the perineal lump I've had that no one has diagnosed (except me) and my worst fears were confirmed; I have a fistula. Waiting to hear from insurance to schedule seton placement. Surgeon says he is sure from exam (horrid!) that I have anal crohns because I have a fistula and a fissure and non-crohnies would have been crawling in pain while I am only mostly in pain. Wants to take a picture during surgery to show students! I am breastfeeding and do NOT want to wean by force because of remicaid or humera. Seton will stay in until the biological meds get the crohns under control, a year or so! Summer is ruined for my kiddos, I had so many plans but I am so sick. Before C. Diff I NEVERMIND had any diarrhea or intestinal issues. If it is crohns, I totally blame the c diff. I don't know what I would do without my children to keep me going. All of this is so overwhelming and frustrating and apparently life long and what a crappy life (pun intended?).

Going to have to change my signature line because even I don't believe it anymore.
You WILL be okay!

Lisa33
Long Time Contributor
Posts: 2430
Joined: Mon Sep 29, 2014 1:45 pm

Re: Fistula

Postby Lisa33 » Wed Jun 10, 2015 4:08 pm

I am so sorry that you are going through all of this. It is overwhelming and frustrating I'm sure. I know all of this is bleak right now and the diagnosis is new and you need to process everything in your head. Just vent and let it all out! And then after, try to think positive - the fistula can be treated. And, if it is Crohns, you will get it under control. I know all of this takes time, but you will get to a better place. Thank goodness for kids because they surely give you the strength and motivation to get through anything. And not only that, they keep your mind occupied and busy to help distract from your illness. They give you no choice but to live your life as normal as possible, even when you feel sick and tired.

I wish there was something that I can say to make you feel better and take all of this away. But, now that the guessing game is over, and you know what you are dealing with, try to focus on treatment and getting yourself better. You WILL get back to living your life with your family. And focus on those kids to get you through this horrible time.

Hugs to you,
Lisa

beth22
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Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Fistula

Postby beth22 » Wed Jun 10, 2015 4:34 pm

A friend of mine had a fistula and was told that it was probably Crohn's. After testing it was found that it was NOT Crohn's. They treated the fistula and she never got another. Having said that, we have had a couple of posters that got Crohn's post c diff. Whether the c diff triggered it or not is unclear, but they were treated. One got FMT and it cured her of both c diff and the Crohn's. If it were me, I would get a second opinion and not just accept that it is Crohn's (unless biopsies were done to confirm it).

zinnia1
Regular Contributor
Posts: 170
Joined: Wed May 06, 2015 12:40 am

Re: Fistula

Postby zinnia1 » Wed Jun 10, 2015 7:33 pm

i had a fistula repair after my son was born. I waited til he was 8 mos old as I was breastfeeding and iI was worried about the pain meds I knew I would be taking. I had a 4 year old and an infant. It was tough, but you power thru. It always felt so much better when it had drained and I had that done many times before the actual surgery. I remember because of the spinal I couldn't pee after, but it was a rinky dink hospital and they sent me home- only for me to go back to ER in middle of night for a cath- so be aware of that.
It was not because of crohns. I had had a hemorrhoid foolishly removed right after the labor and pushing and I panicked and had it removed- then later stitches tore and I developed fistula. A long time ago, but the scar is still there and gets irritated when my bowels are not working as they should. Fissure happen too. There is a cream called calmaseptine which is comforting for those.
I wish you the best of luck. It does get better and you are not alone.

lillychamille
New User
Posts: 25
Joined: Fri May 31, 2013 1:02 am

Re: Fistula

Postby lillychamille » Wed Jun 10, 2015 10:30 pm

I can't tell you how thankful I am for all of you and these boards that have kept me sane through this process. What would I do without you? Gonna try my best to focus on the seton and then worry about biologics and crohns. Going on a scheduled vacation tomorrow and worried to death about cleaning this stupid fistula and pain, etc but truly you all have given me some hope. I am just so amazed how you all have your own issues and still have time and energy to comfort others. I hope I can do the same when my tears clear.
You WILL be okay!

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Fistula

Postby Bobbie » Wed Jun 10, 2015 11:19 pm

lilycamille,
Do get a second opinion. No doc is always right. See doc jokes in Humor.

Have a good vacation. Take all your hygiene products with you. Good for you for going!

zinnia1
Regular Contributor
Posts: 170
Joined: Wed May 06, 2015 12:40 am

Re: Fistula

Postby zinnia1 » Wed Jun 10, 2015 11:22 pm

That you are going on vacation reminded me that I went to the Bahamas of all places w/babies and the fistula…. god to be young again! A planned big extended family vacation on a beach… This is going to sound weird and TMI, but a small hand mirror in my bag was helpful just to check on how things were progressing…. Never thought I would tell someone that!
I am interested in how one goes on vacation w/the D from C diff- hoping to get away myself, but not sure how to manage….

Nancy1
Administrator
Posts: 1902
Joined: Wed Jan 18, 2006 1:48 am

Re: Fistula

Postby Nancy1 » Wed Jun 10, 2015 11:43 pm

I had to fly to West Virginia several times during my cdiff, because my father and my sister both died there. The main thing I did was to get a medic alert bracelet, so I could tell the flight attendant if I had to go to the bathroom urgently and had to go to the front of the line.


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