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Rectal advancement flap surgery and fistulotomy

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Crohn's Disease
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Posted 8/26/2015 2:29 AM (GMT 0)
Hi everyone. I had a ishiorectal abscess back in February while I was pregnant. Had it drained, then it came back and had a seton placed in April. I gave birth in June and had my first follow up apt today. I was very discouraged by my CSR and was told that I would need an MRI (which I knew) to determine the extent of the tract etc. after the MRI she will determine which procedure is the best option for me. She told me success rates is less than 50% and that this disease is very pesky and hard to get rid of. I don't have CD and have not been diagnosed wi any other bowel disorders. My CSR keeps reminding me that it could be worse and it's not like I have cancer. I understand that things could be worse but this is the "worse" for me. I have been healthy my entire life until I got pregnant. I have a beautiful 2month old boy whom I love dearly. But I cannot enjoy him because this whole fistula/seton issue I'm dealing with is bringing me down. I was so upset after my appointment that all I did was cry on the drive home because I just felt so hopeless. All my husband could do is try to comfort me which didn't work. I need someone out there to tell me their success stories and if they healed from having a fistula or seton in place with these two procedures. I really am losing hope and I need something to hang on to. Someone please help me.
Posted 8/26/2015 3:04 AM (GMT 0)
Oh I'm so sorry you're struggling with this. I've heard women can get fistulas from pregnancy/delivery, did you have a big baby? Or a difficult natural delivery?

Not to scare you but I had signs of Crohn's disease in my teens with what's called perianal crohn's skin tags, they are kinda but not at all the same as external hemorrhoids but instead of being an inflamed vein it's actually diseases anal tissue related to crohn's disease, when I was a teen they came and went on their own and it wasn't until oddly enough, about a yr and a half after I had my first baby (she was big for my size and being my first, 8 lbs 15 oz natural delivery) that my skin tags really got nasty (still believing they were hemmies as every doc that looked at them said they were, they were wrong) then my CD quickly became apparent when I started having daily frequency and it soon turned into diarrhea (after I had the skin tags believed to be hemmies banded) they shouldn't have banded the skin tags as they were in a flare (large and hard) and sadly stayed that way ever since (24.5 yrs later now) that on top of severe crohn's attacking my small intestine, colon and rectum was enough to put me over the edge especially with a fairly new baby still...so I feel you pain...and your CRS by the way, deserves a hard slap in the face for her comments to you and should be ashamed of herself for what she said to you.

Not saying that this fistula is a definite start to a diagnosis of Crohn's but I just wanted you to be aware that CD is a very disgusting and sneaky disease that I hate with a vengeance by the way as it totally ruined my life in many ways. I saw an episode on Dr. Oz about some women developing fistulas strictly from pregnancy/birth/delivery so if you can, look into that....I also suggest you get more opinions as well and hopefully you'll find specialists with a much better bed-side manner as well as knowledge as to what the cause and hopefully cure to your fistula is.

Congratulations on your new baby boy!! What day in June was he born? My birthday is the 22 of June lol!
Posted 8/26/2015 3:58 AM (GMT 0)
Sorry to hear you are going through this. This probably isn't what you are going to want to hear, but I agree with PB4 as this disease is sneaky :-/ I didn't really have other signs of Crohns when I was DX. Just the abscess and fistula (I failed flap, and plug surgery. I still have the fistula and a seton) I actually still don't really have any symptoms besides rectal pain. But my recent scope showed very active Crohns pretty much everywhere. Did a colonoscopy confirm you don't have Crohns?
This will make a difference in the success rate of your surgery. If you have it, unfortunately the surgery success is lower, but there's also drugs like Remicade and Humira that have success closing fistulas. Mine closed with remicaide but then I had an allergic reaction to it so I had to stop taking it. The fistula reformed. If you don't, there are multiple options for fistula surgery. Also, I'm not sure of the success rate of this, but I did hear that Hyperbaric oxygen therapy can help heal fistulas if you don't have Crohns. But I think maybe a second opinion is in order. I will say that it's really hard to wrap your head around getting sick. Having something that can alter your life is definitely worth feeling upset about. I was healthy for the past 8 years with no symptoms and then I developed a severe rectal flare a few months ago. It was difficult to think that I was going to have to go through all this again. But you're ok the right track, asking questions, getting advice... I hope you have a support system at home that can help you through this challenging time. ((Hugs))
Posted 8/26/2015 12:57 PM (GMT 0)
I am so sorry! Here is a post I wrote about mine. It is easier to copy the link than retype all the info. :)
https://www.healingwell.com/community/default.aspx?f=17&m=3404183
Posted 8/26/2015 1:55 PM (GMT 0)
My only advice with the flap surgery is to make sure you get a second opinion. I had one in October that went wrong because of how much CD inflammation there was in the lower colon. I just conferred with another CRS who did a rectal dilation and he said he would have done a temp ostomy to let my colon heal then done the flap procedure. Just my experience and not necessarily yours. I have heard success stories on here---just not mine. Sigh.

Wish you luck and congrats on the new baby.
Posted 8/27/2015 8:44 PM (GMT 0)
I've had a perineal fistula since 2009 and had a baby in November 2014.
Having a csection was the only possible option for me.
Did you have a vaginal delivery?
Did it make everything worse?
Have you had a colonoscopy to rule out Crohns disease????
That is key.
If you're inflamed, you can get on meds to heal the fistula.
If you're not inflamed, you're just unlucky.
Fistula success stories are super rare and usually only temporary.
There is no quick fix.
Having a fistula like your doctor said is not the worst thing that can happen to a person, even though it may feel like it at the time.
I've had to live with mine because what else could I do?
Posted 8/28/2015 12:13 AM (GMT 0)
I would do a plug surgery way before I would do a flap surgery. A plug you can just stick a seton back in. Flap usually means ostomy, even if it's temporary. You don't want a bag while taking care of a newborn. Setons can stay in indefinitely, even forever if needed. Not much different than a piercing.
Posted 9/18/2015 2:49 PM (GMT 0)
I'm so sorry for this delayed reply. I haven't been on here and never received emails indicating that others have replied to my original post. I have been healthy my entire life, I have no been diagnosed with CD not do I have any symptoms of it. I was constipated during the early months of my pregnancy and did have fissures. I am unsure why I got the rectal abscess. I do have a natural defect and was told that the muscle between my vagina and rectifies very thin. I'm unsure of this is a cause of the abscess. Due to this defect and the two surgeries during pregnancy, I had a c section. I was told that I can never have vaginal because there is a very high chance that it would create a recto-vaginal fistula. So we opted for a c section instead. My CSR never offered me to have a colonoscopy. Currently I'm waiting for an MRI because we were unable to do one during my pregnancy and my diagnosis was based on ultrasounds. I'm hoping the MRI will reveal what's actually going on inside me. I wish there is a solution to all this because it is so overwhelming. Thank you all for sharing your stories with me.
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