My story - crohn's w fistulas

[dgg]

I was diagnosed w Chrohn's about a year ago. While I was 7 mos pregnant I started developing horrible pain in my rectal area and the doctors couldn't figure out what it was. Had an MRI showing a mass so I was on antibiotics for the rest of my pregnancy. The pain was so bad I couldn't sleep and everyone told me it was probably related to pregnancy. Long story short, it was a horseshoe fistula. Doctors ran some blood tests and did a cell biopsy which confirmed Chrohns (I was 35 yrs old). Since then I have had 6 or 7 surgeries and now have 3 draining setons.
I started Remicade last year as well but nothing seems to work to heal the fistula. I have gotten used to the setons but as certain areas close up more the fistula can't drain as well so I end up back in my surgeon's office where she somehow opens up the area a little more and then the fistula drains better. The issue is when it can't drain it fills up and I get pain and pressure which is horrible. Right after delivering my baby, I started having psychological issues (I never had any history of this before) and ended up having to be hospitalized. It was really horrible and the doctors said it was a perfect storm (lack of sleep, chronic pain, anxiety of not knowing what I had, and being post-partum). Luckily I'm better emotionally now but I'm still so frustrated since I wish this fistula would stop giving me issues. I would love to find others who have dealt with fistuals like mine and to see if anyone had advice. I know there are some plug and flap procedures but I don't know if I'm a good candidate for that. Thanks in advance for any advice.
Dgg

 

[stevereds]

fistilas suck..I have dealt with them for over 15 yrs now..I am 44. Flagyl. Cipro and hot sist baths seem to help it, a well as pain meds. I have had one magor surgery for a fistula..the 1st one I have had. SInce then I have multiple fitula's. They usally start as abcesses, then eventually break open and drain on their own, luckily, without surgery. But it is very very painful.
My doctor tries to avoid any type of surgeries unlesss absolutely ness.

 

[AndiGirl]

Congratulations on your baby! What a way to welcome a new member of the family. I sure hope that you received plenty of love and support from you family and friends when you needed it. My little girl just turned one, but I can still vividly remember the pregnancy, the symptoms, labor, and recovery. It's not an easy time period, let alone when you are sick, or being diagnosed with a disease. Welcome to the forum. This is a wonderful place to meet some very wonderful and supportive people.

 

[Mark63]

Hi Dgg,

Welcome to the forum.

I've had Crohn's for more than 20 years and have lived with perianal fistulas, abscesses and infections for the last 6 years. During this time I've had 10 surgeries and currently have a seton in place. I had a review with the Surgeon last week and he was very happy with their most recent handy-work. However, within a couples of days the pain has got much worse and I'm sure that there is an area of infection that is not being drained.

I only wish I knew what the answer was. I've been on Humira for the last 6 months and Remicade and Imuran before that. My cupboard contains enough painkillers and antibiotics for me to start my own Pharmacy. I have discussed the plug and flap procedures with the Surgeons and they say that while results look good, having Crohn's complicates matters. Slow healing and recurrent infections mean that the plug frequently falls out and in their experience the success rate is only 30-40%. However, the plug is a low risk procedure. Similar problems with the flap, it tends to fall off. There is fistulotomy, but that involves cutting through the anal sphincter and if the cut is made at too high a level you can be left with incontinence. There is a procedure that involves injecting the fistula with Fibrin glue to close it off and some on here have had good results.

A good Surgeon will only cut a Crohn's patient when absolutely necessary. The problem is that even if a fistula can be closed by some means, there is a high probability that it will return in the future. So they want to minimise the collateral damage.

I wish you well and hope you find the answer. If you do please let us all know. In the mean time there are plenty of understanding people on here to provide help and support.

Mark

 

[xJillx]

Hi Dgg! I don't have any advice for you regarding the fistulas, but I just wanted to welcome you to the forum. I hope you find relief soon, so you can fully enjoy running around with your little one!

 

[CDDad]

Hi Dgg,
I know the pain and horribleness of fistulas and setons. Mine are gone now (along with my anus ). I just want to wish you good luck in dealing with it.

 

[ameslouise]

Hi and welcome!

I don't have any experience with fistulae or advice, but just wanted to pop in to say hello! Hope you find some answers and advice here!

- Amy

 

[BEACHLC]

Hey dgg, I have perianal fistulas too. I had my first seton placement surgery in Oct and a second in Nov when I developed some more fistulas. I started Remicade in Nov and just had my fourth Remicade treatment. I have had some improvement in my fistulas, less drainage and less pain. I had an mri last month over concerns of more fistulas but I just have an area of inflammation that the surgeon is hopeful that the Remicade will take care of in time. I have taken flagyll a couple of times in the last few months when I began to get more drainage that seemed to be infection. My surgeon said that if the fistulas are being healed we can begin taking the setons out, one at a time to make sure that they are healing and I don't get another abscess. He did tell me that some people with crohn's and fistulas do not have the setons taken out because the crohn's makes it hard for them to heal properly and they become infected when the setons are taken out. My gastroenterologist said the Remicade has been shown to be very effective in healing fistulas and he is very optimistic. He also said that other TNF blocker medications like Humira have had similar effects on fistulas. I know I am tired of dealing with these fistulas and hope they heal up. It is bad enough to deal with the pain and symptoms of crohn's without these too. For now it is a wait and see. I hope all goes well for you. Hang in there you are not alone and it will get better in time. Keep me posted on your progress.

 

[Jennjenn]

Hi welcome

 

[amber]

Hi dgg,

I am new to this forum as well and can relate to your situation. I developed Crohn's shortly after my daughter was born and also had a horribly painful perianal fistula and abscess. My doctors tried several approaches to healing the fistula, so it's not exactly clear whether the meds or the surgery worked, but fortunately it is "quiet" now (my surgeon's wording).

They put me on several meds (Flagyl, Entocort, Remicade and Imuran) and then the surgeon eventually placed a catheter in the drainage incision. The catheter is kind of gross to describe and was miserably uncomfortable, but I think it helped the healing process because it allowed me to flush the abscess daily and it made sure everything was draining properly. Every 2-3 weeks the surgeon replaced it with a successively smaller catheter that allowed the area to gradually heal. After about 2 months, the abscess was gone and we were able to remove the final catheter. I haven't had any trouble with the fistula since then (that was back in October). The surgeon thinks the fistula tract is still there and he's not sure about the long term prognosis, but so far so good.

I hope you start to feel better soon. I know from my experience that it's not easy to be a new mom and to be dealing with this. Hang in there and keep us posted.

Amber

 

[dgg]

Thanks to everyone for all the support. I don't have anyone else who can relate to me about having a fistula (all the frustration, pain, and disgusting issues that come with them). It's good to know I'm not alone.
Over the last few days I've been feeling more buildup (like a hardening) near the one drain that always seems to be problematic. I can push on it a little to relieve it (yucky pus!) but then it comes back. 3 more weeks until my next remicade infusion so I'll be interested to see if it gets better after my infusion.

Has anyone tried Humira after using Remicade? Since I've been on Rem for a year and it still won't heal I wonder if trying another medication will work. I'll ask my doctors as well.
Thanks.

 

[Mark63]

Yes, as posted above. I'm still waiting for improvement. I think it's important for the Surgeons to get things right first I.E. effective drainage, before the drugs can really do their work. I would get your situation reviewed before your next infusion.

Mark

 

[Lisa]

Hi and welcome to the forum - sorry I missed this before.....

I used to have fistulas, spent over 2 years dealing with them, my doc/surgeon never talked about setons that I remember...it was just a 'wait and see'...then I got pregnant.....

Remicade has been the miracle drug for me, my fistulas cleared up within a couple of months of starting it.

Welcome again, please check around and don't feel anything is TMI here!

 

[Cookie]

Over the last few days I've been feeling more buildup (like a hardening) near the one drain that always seems to be problematic. I can push on it a little to relieve it (yucky pus!) but then it comes back. 3 more weeks until my next remicade infusion so I'll be interested to see if it gets better after my infusion.

I know exactly what you mean about the hardening/pus situation. I dealt with the same thing when I had a rectovaginal fistula...no fun. When it would fill up, it would become very sore and irritated. The thing that worked for me to keep that from happening was Cipro/Flagyl (antibiotics). They were like a miracle, but when I would finish my course, it would come right back. There has been much discussion about whether it is ok to take these meds long term or not due to certain side effects. I was not too keen on that, so I finally had flap surgery(twice).

The first surgery failed after a year. I had the second one about 18 months ago and I have not had problems with the abscesses at all. I do have some leakage and I'm not sure whether it's from weakened sphincter muscles from the surgery (I was warned that could happen), or if it's from another small fistula, but as long as I don't have the abscesses it's not too worrisome.

This is a very abridged version of my situation. I have posted quite a lot on here about it if you are interested in more details. Just let me know if you have any specific questions about the surgery.

BTW, Remicade did not work for me for the fistula. My next step was to try Humira or the surgery and I opted for the surgery because I thought that if the Remi didn't work neither would Humira, but now that I have more info on that subject, I think that may have been faulty thinking.

Best of luck to you!

 

[Sue-2009]

Hi and welcome...I think it is great you found us here. I hope your fistula is heals better. Sue

 

[genebrunet]

hi dgg, welcome to the forum, i have a similar situation to what you have with the horseshoe fistulas and all. i currently have 3 setons at the moment, all doing very well, ive been feeling much better with them and hoping they keep getting less and less painful. hope you pain lessens and you could move on without these painful things...

 

[Sha0913]

Hi, I had really bad fistulas almost from the begininng of my diagnosis with Crohns. I have had them open and close and open and close again and again for some 19 years, I had cutting setons 2 years ago for about 6 months and they drained and healed my horrid fistulas, and since I had the setons out and have been on remicade, I have had no problems with them at all. Hope this helps a bit.