Perianal fistula-should they be taken seriously?

[taraswede]

I have had a perianal fistula for some time I believe, bleeding after BM, sharp razor like burning pain that lasts for along time.....but I finally took a mirror and looked in December and found out it was a fistula...

I went to my gastro when I was flaring up in december(still am ) and he did get "excited" when I show him my fistula as he likes to see physical proof and jut prescribed flagyl and cipro and would proceed more after my colonscopy the week coming.... I had an allergic reaction to cipro and stopped it and the flagyl only helped a little...

Well I have crohns lower down( terminal ileum) and therefore he couldn't see anything so therefore he thought I must be fine then, as he told me, he relies on my physical signs, not really elevated blood work etc. ( I have only had him for 2 years and pediatric g.i. and another g.i. Treated me while I was away in university)

I checked again since I have feeling even more pain lately, and of course the fistula is still there, painful and bleeding as ever, sharp pains etc. and I looked and it has big white spot in it. Weird as it sounds, I took a picture with my iPad just to view it more clearly and it was a pretty big whole I guess you could say.

So my question is....I know I should not suffer in pain but should it be taken seriously? Is it a big deal? It is certainly painful enough and never seems to go completely away but I hate bringing it up to my G.I. as he doesn't seem to take it very seriously...therefore me just enduring it...this is flaring up along with pain in my lower rq , elevated CRP,ESR, liver enzymes , ultrasund edema etc....
I am just wondering if I should bring it up to my GP or g.i. Or just endure...
Thanks!

 

[Grouchy]

Wow, sorry to hear your suffering and your pain not being taken seriously by G.I. I have only had one Fistula and being the tough guy that I am, I endured the pain as long as I could. Eventually the Fistula broke through the skin, and I mean it was really painful then during a BM. When I would pass gas, I could feel the gas coming out from two openings on my bottom instead of just the one. That scared me enough to finally go to a G.I. who referred me to a CRS that performed a Fistulectomy a week later. I'm still recovering from the procedure (5 weeks now) and still having painful BM's.

Your question was "or just endure...."? My experience is that it's not going to get any better on it's own. It may be months from now but there will come a time when you just can't take the pain anymore and then get something done - like me. I recommend you ask your G.I. for a referral to a CRS (Colo-Rectal-Surgeon).

I should add that even though the fistula was infected and hurt like all get out, neither the G.I. or the CRS gave me drugs for the pain or for the infection. The CRS said drugs would not help me (at least in my case).

I wish you well.

 

[taraswede]

Thank you for your helpful words...i was honestly curious as my g.i. didn't seem to be concerned when I was, so after a while, you begin to believe you may just be making a bigger deal about it, although your body is telling you something different! You just tend to believe the professionals sometimes

I am sorry to hear about your fistula pain! It literally is a pain in the butt! I hope you continue to feel better from the fistuletomy and it eventually heals !

How do you know when it is infected? Mine bleeds off and on, and I'm not sure what the white dot is...I am not sure where the other opening/side of the fistula leads to...is surgery the only option if continuous antibiotics didn't work? Mine has definitely broken skin for a while, like a big hole basically ?it is starting to get like it was before, painful to sit or stand/walk where there is pain there below, but this is all information I told the doctor before and he didn't seem that too concerned. I guess in the beginning I was too used to years ago doctors not 100% believing me so I still have doubts when the doctors don't seem to concerned til it is too painful/too late but I am FINALLY taking more charge now!

 

[Grouchy]

I dont know how to tell about the infection. My symptoms were I got extremely weak and shakey. So much so I couldnt sign my name or write. After a morning bath I felt weak and faint, had to lay down and rest. Then after breakfast Id have to lay down and rest again. Still no medicine from Dr's. CRS just said the infection will do that to you. I started getting my strength back at week 3 of recovery. Im getting stronger every day.

I think Doctors tend to make you feel stupid or like a hypochondriac when its actually them who are unable to properly diagnose or treat your health issues. They cant figure it out and so they just leave you hanging.

I wish you every success in the treatment of your fistula. Don't be like me and wait so long to seek competent medical treatment. Good luck to you going forward.

 

[xX_LittleMissValentine_Xx]

Hello,
I really don't think your fistulas should be ignored, and you GI needs to take them more seriously.
If you have one you can visibly see, it is possible you could have them higher up the GI tract. If this is the case they can cause absorption issues, or can go into other organs like the bladder. Ultimately if you ended up with several fistulas in a certain area this could lead to surgery needed such as a resection or an ostomy.

I don't want to scare you with this, I just wanted to highlight how much they could potentially cause problems.

If your fistula is low enough that you can see it, I would imagine the operation that Grouchy mentioned could be successful for you. If the fistula doesn't go too high then they might be able to cut it without it effecting your sphincter muscles, as was the case for me. This has resulted in one less fistula for me.

Other than that fistulas wont heal on their own. Infliximab/remicade has been known to close them, though there are no guarantees.

I think you need to try and get an MRI scan of your pelvis to see if you have any more fistulas which you cant see.

I hope you can get your GI to take you seriously, and if not you might need to think about finding someone who will.

 

[AlliRuns]

Been dealing with fistulas form awhile now, and I have noticed that not all doctor's take them seriously. I had a doc tell me that busy were no big deal at all and they could just be left alone. Obviously that Doctor has never had to deal with one herself or she wouldn't have said such a ridiculous thing.

 

[taraswede]

Thanks everyone! I told my GP my worries and thoughts and she definitely thinks I need a second opinion!

And thanks to Trysha's recommendations and among others, my doctor is getting me a referral for hopefully John Marshall in hamilton or dr. Irving at st.mikes in toronto!

So thank you for everyone's advice, and making me realize a little better its not just me making a big deal out of something not a big deal(even though my head and bum were telling me otherwise!

 

[pipmom]

My 16 yr old suffered the big run around with her GI and pediatric surgeon for two months with painful fistula that did not heal with TPN,antibiotics, I and D with packings,Prednisone, and Remicade. Fired the surgeon and pissed the GI off by going to a large teaching hospital where they said the only tx for ongoing fistula is Setons. Still on Remicade, but overall she is doing well. If you are not getting better, go to someone who knows about IBD and all of the horrible complications.

 

[Mistybear]

Taraswede, I know exactly where your coming from! I also have a painful fistula, even though I am not in agony, they do hurt. Had a seton once before, and said never again, that really was a pain in the ass, it constantly felt like it was cutting me. So I need to decide to live with the fistula or put more "poison" in my body. I really hate the idea of humira, sort of freaking me out. My GI doctor has never offered any type of pain reliever if that makes you feel any better! I guess I have to suck it up!!!

 

[taraswede]

Misty bear, please do not suck it up too! I have learned from the wonderful members hear some great advice and more confidence to stand up to my G.I. And seek a second opinion...don't ever settle with the pain!

And pip mom, sorry to hear about your daughter...I heard about setons and am a little nervous that might have to be my route because the fistula never fully heals and antibiotics just sugar coat it a little for a little time but then back full force...

I am seeing my old G.I. This Wednesday so am trying to write a list of things to say to him and be strong because for some reason, I tend to be intimidated by him, which I never have with any other doctor, but he just always makes me feel like I second guess myself I think. But I am not sure what I should tell him to do about it or hope he takes a more stronger approach?

 

[BoyMama2000]

My son has the same issue and his GI was very concerned. He said it meant his ileum was likely in a flare and did a video capsule to confirm that it was. He will have a second drainage with a loose seton tomorrow to prevent it from abscessing again and they increased his pentasa and added entocort. His surgeon said the fistula will not heal until we get his Crohn's back into remission. I would get the opinion of a 2nd GI and see if you are in a flare. Your blood work and symptoms would certainly indicate your are in one. You may need more aggressive medical treatment to get this under control.

Best of luck to you. These stink to say the least!

 

[taraswede]

its burning so much now i could cry! thank god for G.I. tomorrow lets hope he just does something...

and i spent an hour looking down there tonight (which would sound crazy to anyone else i know in the world but hopefully to the forum here, im not the only one)

and i also have a skin tag above my bum that is also burning as well....also i have 2 more circles/dents that look like the fistula and are indented but have not broken the skin yet....i am not sure what that means....could it be more are forming, and what about the skin tag?

im just glad i looked because now i can tell the g.i....all i know is something has to be done because i feel like someone is taken a razorsharp razor to my bum and is burning it...and im so done with this i feel like crying and laughing at the same time! ahh thank god for this forum sometimes, i can tell my bf and my family this 10,000 x and they support me but they will never even begin to understand as much as the people do here, and it gives me a comforting feeling that im not alone, although i wish this didnt happen to any of us!

 

[BoyMama2000]

There is no doubt that what we talk about regularly here is not common to most! You must insist your GI look at your bum. Skin tags are also signs of Crohns. I hope you get a new medication routine and some relief.

My son has been sleeping most of the day after the seton placement and drainage. I hope he can manage the seton and that it doesn't bother him when playing sports!

Best of luck! Let us know how it goes!

 

[Grouchy]

taraswede: Im so sorry to hear of your increase in pain level. Keep us posted on your progress with doctor. You'd think that in this day and age, and with modern medicine, no one should have to suffer the pain your going through. Yet we do. My heart goes out to you, I hope you find some relief and soon.

 

[pipmom]

BoyMama, Your son will be uncomfortable initially, but eventually will be able to return to normal activities. My daughter is no longer draining from fistula, but we are still trying to get in a true remission. Three to four weeks post Remicade, she starts to complain of discomfort in perianal area. Perianal Crohns is so difficult to control. We added Methotrexate which sent her into terrible exhaustion and hair loss. She refuses to let me inject her now. Really need biologic and immunomodulator to battle perianal disease. Teenagers struggle with how rigorous you have to be to fight this. Will pray for you and your son.

 

[BoyMama2000]

Pipmom,

Does your daughter truly have peri-anal Crohn's disease? I am so confused about this. The GI doc told me he only has Crohn's in his ileum but having Crohns makes him more prone to abscesses and fistula development from an abscess. They said that if they get the ileum into remission, then the fistula will stop draining and possibly heal although he could need more done for the fistula eventually. The surgeon did not see signs of peri-anal disease. Should they be giving him meds to treat peri-anal disease? Pentasa and entocort don't treat that area.

Thanks, Nancy

 

[taraswede]

Boymama, I am told I have crohns in my ileum although I have many ulcers in my mouth and symptoms all the way to my anal region too....so I don't know if that categories peri-anal if you have abscesses and fistulas down there, at least that's what I was told!

 

[BoyMama2000]

I think I am confusing rectal disease with peri-anal. I guess any abscess or fistula in the presence of Crohn's is likely peri-anal. It is just confusing. Thanks for helping to clarify. Do you notice less mouth ulcers and peri-anal issues when your ileum is under control? Are you on remicade?

 

[taraswede]

So back from g.i. Appointment....said it was harder to see the fistula, meanwhile I just took a picture with my iPad and it was big and showed it to my bf and he agreed....

He doesn't believe that fructose malabsorption or SIBO has anything o do with me....never really dealt with it with crohns and didn't believe it for me ...he wanted to put me on high doses on methotrexate and remicade after seeing blood and ultrasound edema but waiting on the remicade until ct scan....but didn't listen to me about diet, fistula, or fructose or SIBO tests....completely disagrees and disregards that diet has anything to do with it so I guess I am on my own in a lot of things!

You know you feel when you dream and they sent you back to kindergarten or something, that low small feeling, kind of put down and anxious ...that's how I feel coming out of there....lol laughing but makes me not want to go back to a g.i. Appointment again....no way to describe it and can't explain it but I feel so anxious, nauseaus and fast heart rate, just after having this appointment! Crazy!

 

[xX_LittleMissValentine_Xx]

If you feel your concerns aren't being addressed properly than maybe you do need to seek a second opinion.
However, Remicade is really the only drug which could possibly heal a fistula so was that what lead him to that decision or something else?