Fistula Questions. Please help!

[Kim]

This may get a bit too graphic, sorry about that...

I have not been diagnosed with Crohn's yet as I have no insurance but my Dr. is saying he is sure I do have it. I currently have 2 separate fistulas and have had them for 10 months. Different Dr.s just kept telling me they were just infections or cysts until last Thursday when I was finally able to go to my family physician and he was able to see the drainage. He looked at the drainage under a scope and also sent it out to the lab. One of the fistulas is located near my tailbone (just below and to my right) and the other is between my leg and "girlie" area. They both drain and my Dr. stated that they are draining intestinal fluids. He is telling me these fistulas need to be taken care of with surgery asap and that I cannot wait 3 months for my insurance to kick in. His exact words were: "You don't have 3 months" which is completely terrifying to hear from your Dr. I guess my question is what if I don't have a choice? I can't get insurance any faster that will cover the surgery and colonoscopy, etc. Can the fistulas kill me or cause other serious issues if I wait the 3 months?? I don't know what to do?

Anyone with any info out there? :shifty-t:

The Dr. currently has me on Cipro 500mg x2 a day for 30 days. (I just came off of the same thing x14 days. It did seem to help get rid of the abcess as I had green moucus and it went away after the antibiotics but I constantly drain blood and pus from the fistula on my tailbone and weird liquid from the other one.)

Any help is appreciated, Thank you in advance!!

 

[Kim]

Anyone???

 

[stretch]

I had a very complex fistula for over 7 years that drained the whole time so dont worry.

The surgery might involve putting in a seton drains your dr will explain but it is basically a loop of thin rubber or string that will help with keeping the fistulas open and draining so less chance of infection.They don't hurt and you won't feel them after a day or two.

I had three setons in once, but now have none and no fistula either just a bit of scarring.

They take a lot of time and patience to heal especially with Crohn's as the surgery has to be much less invasive due to your inflamed bowels and risk of flare ups as my surgeon explained.

 

[Mark63]

Hi,

Like "Stretch" I've been living with my fistula for six years now, despite many surgeries and the best available drugs. Fistulas are best dealt with sooner rather later, they tend to grow and can branch becoming more complex. That having been said, the fact that you have a draining fistula is probably better than carrying a closed abscess. With an abscess you could end-up getting very ill quite quickly and needing emergency treatment.

Check out this very informative fact sheet from Crohn's and Colitis UK.

http://www.nacc.org.uk/downloads/factsheets/fistula.pdf

Try not to worry. I hope that things improve for you soon.

Mark

 

[Kim]

Thank you very much. I have been scrambling trying to figure out what to do. It's all so scary because the Dr. told me I couldn't wait three more months for the surgery. But, I don't have a choice. I don't know why he would say that and make it sound so urgent when there are other who are living with them. So confusing...

:study: I have been reading everything I can so thank you for the link, it is greatly appreciated!

 

[Mark63]

Glad to help. I'm sure that you will find many others on here who are happy to offer help, advice and support.

Should the fistula stop draining and a painful swelling develop, I'd get back to your Doctor as soon as you can. I don't know how your particular insurance works, but under those conditions you need immediate treatment and I would have thought that would have been covered?

Mark

 

[Kim]

Thanks Mark, unfortunately I don't have any insurance at all right now. It's not easy to get insurance in the States especially if you have a chronic issue as they will not cover it for usually 2 years anyway. I did have an instance where they weren't draining and the lumps were getting bigger but when I went on the Cipro they started draining again, thank goodness! If it ever gets too bad I can go to the emergency room. Thanks!!

 

[SarahAnne]

No advice, just good luck wishes!!

I understand the situation, I was really sick and without insurance for 9 months. I was so scared the whole time. Insurance kicked in Feb. 1st, daughter split her head open Feb. 2nd and we had to take her to the ER. Then on Feb. 3rd I was admitted to hospital and had a colonoscopy. We couldn't have been luckier with the timing! Hope the fistulas behave until your insurance kicks in.

 

[Gastro Girl]

Kim, Don't let your doctor scare you. I've been dealing with perianal fistulas since 1980. I had one surgery that I thought was a godsend, only to have everything come back with a vengeance. I finally started Remicade 3 years ago which has had the best results.

 

[Cookie]

As others have said, fistulas may be a pain, be they will not kill you. As long as it's draining, you should be ok. It's when an abscess form that you can get an infection that can cause serious problems. Cipro along with Flagyl (both antibiotics) is common treatment to keep abscesses from filling up and infection out. Neither are fun drugs to be on long term, but they should get you by until your insurance kicks in, at which point, you will probably want to see a GI specialist or colorectal surgeon. Surgery is only one option for fistulas, medicines such as Remicade have been known to work well too.

Best of luck to you!

 

[KWalker]

Hey guys/girls. I have also been dealing with a fistula for about two years now, but for some reason, am too chicken to get the surgery for it. I usually don't have problems with it, (besides its presence), but it is rather long, and every so often gets terribly painful. It constantly drains, and is a huge pain is the ass (no pun lol) I just need to get it taken care of.

 

[lj3]

hey gastro girl im getting ready to start remicade for my fistulas and consistent gi sx and i was wondering how soon after starting you saw some improvement in the fistulas?

 

[Kim]

Hi everyone!

Thank you so much for all of your replies. By a stoke of amazingly good luck I was able to get some insurance that covered my issues. After taking 1000mg of cipro and 250mg of flagyl a day for 2.5 months with no improvement, I ended up having surgery yesterday as the abcess/infection was horrible. I ended up with one "horseshoe" fistula going out one end to my rectum where the surgeon also said there was inflammation as well but he didn't elaborate. And the other end of the fistula just went up and towards my front but he said it didn't go to my intestines or anything, it just had a ton of infection and ended with a pocket full of pus. He said he opened the fistula tracks to allow drainage and I have a follow up appt with him in one month where I'll get more info. Now, I'm left with an unbelievable open wound where the perianal abcess was that's about 5in long, 2 in wide and about 1/2 to 1in deep. The packing was taken out this morning and the Doctor doesn't want it to be repacked daily, instead he told me to just cover it with one piece of gauze and change it as needed from the bleeding/draining. Surprisingly, the massive open wound isn't really hurting that much at all, my abdomen is where I am hurting and I'm scared to death to have a bowel movement. So, has anyone else had an open wound that the dr didn't want repacked daily? I'm so scared of getting infection in there....

Thank you again for all your help!!!

 

[Mark63]

Hi Kim,

Glad you are making some progress at last. Yes, I've been left with open wounds like this many times. It's worth while having a daily look at the wond and cleaning-up with a bit of gauze moistened with saline. Once you've done that just cover the area over with fresh gauze. Depending on hiow much drainage there is you may need to chage the gauze 2 or 3 times a day. You should be fine if the wound is kept clean and dry. It may appear slow to heal at first, don't worry one it starts the wound gets smaller every day.

As for going to the bathroom, I hold some toilet paper over the wound area to minimise the risk of things getting wher you don't want them to go. I always hang my rear over the edge of the bath afterwoods and use the shower head to have a good clean-up, preferably using an antimicrobial wash like Hibiscrub. It's easier if you have a bidet, but not all of us do.

Some people may suggest a daily soak in a salt water bath, I've never done but if it helps go for it!


Mark

 

[Kim]

Thanks Mark for the info! It's nice to know I'm doing things correctly, the Dr. Did give some instruction but I didn't think to ask some things like how to have a bm and not infect the wound. Ive been keeping it nice and dry though there sees to be alot of goo coming out of there today. I haven't had a bm yet and Im not looking forward to it as I think it's going to be quite painful just based on how I already feel very sore down there.

I'm so glad to be free of all that infection/abscess I had though, its nice to know if I can just get through this part I'll be well on my way to feeling better really soon!

I hope you're doing well also,

Kim

 

[SunshineSmile]

Hi Kim,
Just sending good thoughts your way! Hope you get things taken care of soon! *HUGS

 

[LilyRose]

Hi Kim,

Just a note to say 'Hang in there". My son has had a fistula, and after two procedures and a year it has finally healed. As Mark63 said it might not look like it is healing for a while then it suddenly takes off and starts to close.

I hope you've had a look at the Crohns and Colitis Uk website which has a factsheet on Living with a Fistula, which I thought was good.

Take care of yourself, and keep positive. They can heal with time.

LilyRose

 

[soloman69]

Kim,

I too had a fistula between my thigh and my "girlie" area. I have now had 4 failed surgeries and the fistula has moved right inside the vagina.

Not trying to scare you more - but don't mess around - push until you get answers and help right away - this is not something to be easily dismissed.

Take care

Tracy

 

[brooke206]

fistula surgery

I have lived with several discharging/ infected/ painful fistulas for over 7 years and am scheduled for surgery a week today, I still don't know what to expect after the surgery as surgeon states he won't know what will need to be done untill I'm opened on the table I'm obviously a little apprehensive will try and report back on outcome as soon as I'm able :eek2:

 

[Mark63]

Hi Brooke,

All the best for next week. Let's hope that you get some relief from the surgery.

I certainly understand how you feel having lived with my fistula for the last six and a half years. Ten surgeries, heavy duty drugs and damn thing's still there. Smaller that it was and less infection in the surrounding area, according to the Surgeons that's a good outcome so far.

Mark

 

[brooke206]

Hi Brooke,

All the best for next week. Let's hope that you get some relief from the surgery.

I certainly understand how you feel having lived with my fistula for the last six and a half years. Ten surgeries, heavy duty drugs and damn thing's still there. Smaller that it was and less infection in the surrounding area, according to the Surgeons that's a good outcome so far.

Mark

HI home now after surgery had quite a bit of small bowel removed and re-section coping okay fistulas more or less removed pain bearable small dressing struggling a bit to get to loo quick enoughand quite painful when I do make it but feel quite well considering fingers crossed can only get better

 

[Mark63]

Hi Brooke,

Glad you are back home and feeling well considering what you have been through. Let hope things continue to improve.

Mark

 

[brooke206]

Many thanks everything crossed for some relief after seven years of misery best wishes

 

[Jayanth]

I would suggest you go on Infliximab as soon as possible. Sooner after the surgery you are on infliximab...they better the chances of permanent closure. Dont let the wound of the fistula remain open too long. Best wishes. Get well soon.

 

[brooke206]

Not available to me apparently do you have experience of this working after surgery?

 

[alychi24]

hello, i am new here. I had a small bowel resection 2 years ago when i was first diagnosed and a week later a fistula opened up on the surgery site and hasnt healed since. It drains feces and gas like an ostomy. My docs have tried remicade and now cimzia with 6mp and prednisone. Anyone else have a fistula on their stomach after surgery? it freaks me out.

 

[Jayanth]

the longer that the fistula remains open...lesser the chances of it healing easily. I have a bunch of fistulas. After a surgery the tissue around the wound is still fresh and has a lot of healing ability...so Infliximab earlier will definitely help.

@brooke doesn't NHS cover Infliximab for you ?
@alychi dont give up on Biologics that easily...try to discuss a longer course with your GP.

 

[brooke206]

NEED more evidence of it's benefits to justify,consultant believes there is evidence that after 2 courses body developes anti-bodies against it, although it was extremely effective at last course and am now very concerned as after surgery had 2 months of no discharge or pain but wound has now started to be a problem again. Gp has presribed course of anti-biotics. worried that it's all starting again.

 

[SickofBeingSick]

I developed a fistula after surgery, in July. It is on a surgical site on my abdomen. Surgeon says colonoscope and Ct enterography show no active Crohns and therefore Remicade or other drugs will not help. I have been on IV antibiotics since surgery and when they are stopped, surgical area reopens (with very severe pain) and starts to drain mucous and eventually liquid stool. My surgeon does not want to fix this surgically, but are there any other options? I can't stay on IV antibiotics indefinitely and find I have more severe pain when area stops draining and closes. I need this resolved so I can get back to work! I have had 0 income since EI ran out in August. Please help!

 

[brooke206]

Ifound myself in the excact situation my surgeon was unwilling to perform surgery and had discharging fistulas for seven years, I eventually made myself heard and virtually insisted on surgery, there are no guarantees with any surgery that fistulas won't re-occur but since I had the parts of my bowel which had fistulated removed in Nov of last year I have been pain and fistula free I suggest you keep talking to your surgeon and get your GP involved.he/she may be able to write an influential letter to the surgeon keep pushing good luck keep in touch

 

[SickofBeingSick]

Thanks for the suggestion. I will talk to my surgeon and GP. I cant stand the pain anymore. With the Crohn's pain (before last surgery), I could avoid the severe pains by not eating. With this there seems to be no end to the pain I am in. Drs continually offer narcotics but I really dont want to be taking these.