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New to the forum - wanting support

Hi.
I have been struggling the last few years with a lot of stomach problems and have been going for countless tests to find out what was wrong (gall bladder? Acid reflux? Allergies? etc) Amidst this (April 2012) we have discovered that I have an allergy to wheat and have sensitivities to things like pork, eggs, chocolate, oranges and peanuts. But as I slowly started to change my diet and begin feeling better (gut wise) I developed a perianal abscess on my right side. After having emergency surgery to drain it, a week later I developed a second abscess on the opposite side. They were already treating me with antibiotics so they lengthened the duration and figured it would go away. But it is yet to go away. I have had numerous prescriptions of antibiotics, I've had the left infection lanced (Dec 2012) and just this week am I beginning to feel tender and sore on the left side again, with my right incision (from last May) opening on and off to release blood and fluid.
Well a general surgeon (who performed the initial surgery), a family physician, a gastroenterologist and colorectal surgeon later I have been told that they believe I have the onset of Crohns (because this doesn't happen to people, especially at my age of 25 for no apparent reason) and that they believe my best option is a seton.
I am getting married in less then 3 months and was planning on starting a family immediately after the wedding. What was supposed to be the most exciting and wonderful time of my life has turned into a nightmare. However if something good has come out of it, I know that my fiance is the best soon to be husband in the entire world and I can't wait to spend the rest of my life with someone who takes such good care of me.
Does anyone else have a similar story? I'm just so anxious, emotional and frustrated about the whole situation and nobody truly understands how it feels. No one in my family has any bowel diseases and I feel like nobody gets it. I'm hoping that by reading and talking on this forum I'll feel less alone.
 

KWalker

Moderator
I'm sorry to hear you're having problems :( Unfortunately perianal abscesses are fairly common among crohns patients. I'm dealing with some myself and have had two surgeries for them as well. I spent 10 days in the hospital because one of one of my abscesses and I ended up with a 7.5" incision because my abscess was huge.

The good news is, you should start to feel better and get some relief soon. Many people have success with setons. It may take some time to stop the drainage but the pain/discomfort usually doesn't last too long after surgery. I had my surgery in December of 2011 and I was draining up until January 2013 but the pain didn't last anywhere near that long. It was more of an annoyance than anything.

Is your abscess near your lady parts or more towards the back? As long as you are not in pain the abscess shouldn't affect your sex life if you are planning on having children. Just don't force yourself to try if you are sore from the abscess because it could cause you unwanted pain.

What antibiotics have you been given? My guess would be Cipro and Flagyl.. I've taken countless prescriptions for the two but I think because my longest prescription was two weeks, they only seemed to work while I was on them. I do think that if I would have stayed on them longer I could have got better results.

You are very lucky to have somebody that loves you and supports you through times like this. Just try not to stress too much (I know, it can be tough) because if you can get your mind off of it and look forward to your wedding!

Best of luck to you and don't hesitate to ask anybody questions on here because you are definitely not alone!
 
Thank you for such kind worlds. It makes a world of difference knowing that people understand what I'm going through (even though it is not nearly as severe as most Crohns sufferers.
My infections are close to my lady parts. This is why a fistulopomy (sp?) is not an option because they don't want to cut the muscles. So the seton is the only option.
I am curious about having a baby with the seton however, is this okay? I'm presuming that a typical delivery is not realistic? My operation date is still up in the air due to the wedding - I'm not sure if I want to wait until after the wedding to have the procedure, but I feel as though I have a new build up of infection that is causing pain and discomfort and waiting for another three months while having infections may not to fun either.
Are you able to give me more information about the seton? My dr was very brief with the explanation and having fasted for over 40 hours my head wasn't really "in the game" so to speak. How long does it take to feel better after the procedure? How do you care for the seton? what determines how long it has to stay in? etc.
I'm sorry so many questions.
 
Welcome to the forum. I'm so sorry you are experiencing this. But hopefully now that you've been diagnosed with Crohn's and they have an idea on a treatment plan for you, things will start looking up. Crohn's can definitely be a tricky disease to deal with, but it can be managed. I personally don't have any experience with abscesses (well, mine was completely internal) but there are people on here who do and will hopefully offer you some insight.

Are they going to put you on some maintenance medications?
 
What does it mean to have internal abscesses? Most of my abscesses have never come to the surface. Is that what internal abscesses are considered. I've had one (dec 2012) that came to the surface and could be lanced but all others have been inside somewhat undetectable other then the pain and swelling. Is that what you have suffered with? I am confused when I read other posts about people having baths and their infections draining. Is that because they are at the surface?
 
They haven't mentioned medication other then the antibiotics for the infections - im presuming because the drs can't seem to find any internal indications of crohns so as far as I know we will deal with these infections and wait until there is more evidence to treat.
 
Wow. I feel strongly that you should be put on maintenance medications. With abscesses it's a double edged sword. They can heal the abscesses but if it's the Crohn's that's causing them you need something to treat the Crohn's so that they don't just show up again. But the flip side is your body is fighting the infection and most of the medications for Crohn's could interfere with your ability to do that. I would definitely be asking them what their thoughts are on that and what their plan is.

The term abscess is kind of generic. It just means an infection that is... contained. Here's the wikipedia article on it.

My abscess was in my terminal ileum. Perianal abscesses are in a different place and I guess they are closer to the "surface." Mine was in an internal organ (my intenstine) and thus would always be internal. In my case they actually stopped my Crohn's medication because it might have been preventing my body from being able to fight the infection. In the end I had to have a hemicolectomy because it just wasn't going to heal.
 
Crohn's Forum has a brief wiki article on sitz baths. If the abscess is on the surface of the skin I guess a sitz bath can encourage it to open and drain. Sorry, I'm not very knowledgeable on the subject. The only abscess I've had was the one that I had my surgery for.

By the way keep asking questions, no need to apologize. These are good questions to be asking. Knowledge is power and in the future someone with the same questions might read your thread and see something answered they were wondering about.
 

KWalker

Moderator
Yes, the word abscess can mean a variety of things. I've had perianal abscesses and they are on the surface. They are lumps you can physically see. Internal abscesses you cannot see. I don't have any experience with setons but there is a ton of information on here about them. They are basically just put in place to keep the abscess open so it can drain properly, although I'm not sure how they would do that to an internal abscess.

I completely agree about antibiotics. Regardless of whether they have found crohns or not. There are chances that antibiotics can work for you
 
Thank you for shedding some light on the subject. I have fabulous doctors but I feel like I have a million questions that I can never seem to remember when I see the doctor. It's so great to have people who are so knowledgeable about this subject to help me navigate through this confusing and frustrating time.
 

KWalker

Moderator
Often times doctors forget that a lot of patients aren't quite familiar with the medical terms they throw out there so it can be very frustrating when you leave a doctor's office and feel like you have no idea what your doctor said. That's why I came here because there are a lot of very knowledgeable members.

I'm sorry I don't have any experience on setons but I'll tag Grumbletum because I'm pretty sure she has a bit of experience with them.
 
Before I started Humira, I had two setons in right at my back passage, they were initially annoying and sore, first week or so, and then after that I forgot they were there, two little bits of what feels like rubber at the side of the anus. They awesome little things that really really help as you have a constant opening, it can't close over and form another abscess, yes, the drainage can be annoying but that usually subsides to minimal discharge after a few weeks and a pad would last for a good few hours, sure I was back in the gym two days after having me seton in.

Someone here has had one in for years and they think it's a God send, they haven't suffered from a perianal fistula/abscess since.

Good luck, you'll be back to normal in no time, don't fret!!
 
How long on average do the seton's stay in? Do they ever get removed? Will your fistula eventually dry up and disappear or is there always a chance that it will recur again?
 
Thanks for the tag, KWalker, and a big welcome to the forum JodieB. So sorry to hear that you are having these issues with abscesses :-( In fact, I don't have any experience with setons as my abscess was internal too, with a fistula connecting my bowel to my bladder. But if you click here , there's a useful sticky post that explains the different manifestations and has advise from forum members who've had to deal with them.
Have a browse through the subforum too as there are quite a few posts regarding setons. I'll also tag Sailorluna, as she has had ongoing problems similar to what you're having to cope with at the moment and she's a wonderful, helpful person :)
 
Thanks for the tag Grumble. :)

Jodie, it seems as though just like crohns in general, everyone has their own seton experiance. There are people here who only had one in for a couple months, went on biologics and were able to heal the fistula closed. There are others that can not remove it.

Sep 2011 they place two seton for me. One peri/rectal one rectal/vaginal. The vaginal one had likely been there for several years. They removed that one two months later. I don't think it did anything to be honest. It still periodically send nasty stuff through my girl parts. :( but it never has abscessed there and I think that they just wanted to be sure it was not likely to close over and abscess.

The other one has had to be drained/cleaned 4 times. Even with the seton in it would continue to try to make new channels and become infected. April 2012 they finally managed to make the channel big enough that it drains just fine.

I started cimzia 8 weeks ago and seems to be helping. The drainage is down quite a bit and the surgeon is starting to talkabout removing the seton. Will it heal and go away? Maybe but it also may heal just enough to stop the draining and make a new abscess.

Personally, I don't think I am ready for that risk.

I don't think that fistulas ever go away on their own or even just with antibiotics if you have crohns. The biologics are your best chance for that, and ther are no guarentees even there. I had thought that the seton was just until your fistula had healed into an open tube (like an earing hole) but my surgeon says it can keep on trying to close and that is why you need the setaon to help it keep draining.

I am sorry that I do not have better answers for you. Welcome to the group though, we are happy to have you here. Good luck with your wedding!
 
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