First abscess and fistula - freaking out!

[sophia30]

Hi there,

I don't have crohns (as far as I am aware) but this was the first forum I came across. I had an anal abscess last summer and this has turned into a fistula. I had an MRI scan a few weeks back to see the severity of the fistula (still waiting on results). I have been referred onto a surgeon and am currently awaiting my appointment.

My main fear right now is where the fistula is. I am absolutely terrified of becoming incontinent after my op (if it turns out the fistula is connected to my sphincter muscle). Is it absolutely necessary to have the muscle cut if it is there? Will I definitely suffer from incontinence?

Secondly, I am feeling extremely unwell with all this. Is there anything I should be taking to ease the infection? I have a very physical job and I am really struggling at the moment. I went to the doctor and he just said it is normal to feel ill but didn't suggest anything I could take to help! This is all completely new ground to me so any words of advice/reassurance would be greatly appreciated!!!

Thanks

 

[xX_LittleMissValentine_Xx]

Hello, welcome to the forum!
Sorry you have these problems they are horrible!
I don't think they will necessarily cut the sphincter muscle, they would avoid that if at all possible.
I had surgery in Jan with my fistula and it was low enough not to effect the muscle. It went well and has been a success! Unfortunately I still have other fistulas though so I am now on infliximab to control the crohn's and hopefully close the fistulas.
As far as the infection, antibiotics are usually prescribed. Its best not to let it linger as it could just make it worse.
Try having a sitz bath to keep the area clean and to relieve some pain. Using wet wipes instead of toilet roll also helps

 

[kel]

I've had 2 different surgeries for abscesses. First was just a fistulectomy, the second involved putting a seton stitch in the fistula which I have had in since July 2012. I must be honest that I hate the seton but I have not had an abscess occur there again.

Anyway, for the first surgery my sphincter was cut in 2 different places as I had 2 distinct fistulae(spl?). This was 2009. I did not experience any more incontinence than I already had from my crohns. In 2012 they did not actually tell me if they if they cut the sphincter but I experienced no additional incontinence.

I suggest you stay off your butt as much as possible for the time being. Typically they will give you cipro and flagyl for you infection. Sitting in a warm to hot tub for 20-30 mins 2-4 times a day can help the abscess to drain (you want this) and will also hep you to be much more comfortable. Use a baby wipe after every BM to keep the area as clean as possible. (Or take one of your baths instead). If you're in a lot of pain ask for Vicodin or Norco, these will help you to sleep, ease your pain, and also slow down your bowels to decrease the number of trips to the bathroom.

Also, if you postpone this surgery AND the abscess does not heal you will reach a new state of agony that will have you begging the surgeon to have his way with you. Just from my personal experience. I hope this helps and makes sense, was typed on phone.

 

[Jmar38]

I too am suffering from a Ileo fistula to my lower right abdomen, not the sphincter. Just like you I had lost 20 pounds after mt first surgery and diagnosis with Crohns. I was never able to gain back the weight for the exact same reasons, food doesnt stay in my system for more than 4hrs. They want me to do Remicade again.Im only on prednisone 40mg a day to try to close the fistula but its just as active and painful. I hope they can get yours fixed. I wanted surgery but they said try med treatments first, surgery probably will happen eventually. Stay strong.

 

[sophia30]

Thanks for the replies

Definitely going to start using baby wipes now and the regular baths to help with drainage. My doctor hasn't given me anything for the infection though. When I had my sigmoidoscopy, the consultant said she didn't think the fistula was infected but it clearly is (without going into too much detail!). Part of me can't wait to get the surgery over with but this will be my first ever op so I'm slightly anxious about it all.

Is it true pelvic fractures can cause a fistula?

 

[kel]

Prednisone will not do anything for a fistula. In fact by suppressing your immune system it increases the chance you will develop an infection there.

Sophia, go into as much detail as it helps people provide you with more informed advice. Are you having the typical fever symptoms, chills, night sweats, body aches, raised body temperature? If not what makes you think it 'clearly' is infected. Drainage does not equal infection.

 

[sophia30]

Hiya, yeah experiencing chills, sweats, aches, huge lack of energy, nausea. Regarding the drainage, if it is puss (as well as blood) is that a sign of infection or not? I thought that would be a sign of infection too but probably wrong as this is all very new.

 

[sawdust]

Hello sophia, and welcome to the forum. I'm sorry you're having to deal with this. I'm not sure how treatment might differ for a patient with perianal abscess and fistula vs a patient with Crohn's.

I did want to say, however, that in working with my GI and colorectal surgeon, incontinence was of the chief concerns for all three parties involved! I would have no problems whatsoever about passing this concern along to your doctors, but it's probably a concern of their too. They can talk through any kind treatment they decide on with this in mind as well.

Also, the chills, sweats, aches, fatigue, and nausea sound like the way I felt when I had the abscess infection. Please call your doctor today to let him or her know that you are having these symptoms. Infections can be serious, so please call today.

I don't know how differently you will be treated than a patient with Crohn's might, but I will say that your concerns are understandable, but I know that I felt more and more comfortable as my doctors and I determined a way forward and discussed everything. :hug:

 

[AlliRuns]

I had fistulas for years before I was diagnosed with Crohn's, thus my treatment was as if I didn't have it.

Some of my treatments included:

Having it lanced open in the doctor's office
Antibiotics
Nothing at all - was the approach of two surgeons I saw, they said to just leave it be.. Um no.
Fistulectomy
Fistulectomy with seton placement

After the second fistulectomy (different surgeon an the first), my surgeon thought there was more going on and referred me to the GI team. I had just moved here the year before, so I hadn't seem the GI docs here. I was finally diagnosed about 6 months after that.

 

[kel]

Yes it sounds like you have an infection. That means there is an abscess most likely developing whether you feel it yet or not (and you will feel it soon). This must be addressed by the surgeon. Also, maybe try to find a better surgeon...the right doctor for you can make all the difference in the world. How is your pain level? If you don't have pain you have plenty of time to find a different surgeon should you choose to. (I am basing this solely off the fact that as the abscess grows it becomes more painful, use your best judgment)

 

[sophia30]

Thanks again for the replies and words of advice/support!

My pain level isn't actually too bad - I have up and down days. I find it more painful when at work as I am on my feet for up to 6 hours a day. When I rest it isn't bad at all. When in pain I get throbbing, aching of my buttock where the fistula is and the skin itself is very sore. When it begins to get really tight and sore down there, is that another abscess forming then? I just assumed that was the fistula flaring up. I went to my doctor at the beginning of the week as I broke down at work, was feeling very ill and in pain. Been off for a few days but the doctor didn't suggest any meds for me just said it was normal to feel ill. Not much help really!

I'm going to give the baths a go though and probably need to stop burning the candle at both ends until I get my surgery and recovery done!

I THINK I am abscess free at the moment.

 

[kel]

I would see a colo rectal surgeon immediately. I do not say this to alarm you, I say it because your doctor does not seem to be taking care of you properly. A cursory glance at the area by a colorectal surgeon will be enough for them to decide on your treatment. No finger poking or otherwise invasive business required.(in my experience) If there is an abscess generally they will want to do a fistulectomy to clean and drain the abscess and help the fistula to heal. If you do not have crohns I have no idea how successful that will be. Generally crohns patients have their fistulae become reinfected and the process starts again. Also, the surgeon may offer to drain the abscess itself in the office and schedule the fistulectomy within a week or 2. This is an option that has paid off big time for me before, but it requires a big man up from you. They numb you up (that will hurt) and lance that sucker. After that your pain will decrease dramatically within a day, and will keep you at a low level of pain until the actual surgery. But, as I said it's a very intense 3-5 mins should you agree to that in the office. I hope this helps, I can only speak from my experience of crohns with multiple fistulae and abscess in the past few years.

Please, go find a good colo rectal surgeon. I really hope you can get relief from the pain and an answer to your problem soon. A fistulectomy is a very small surgery when it's on the outside. It's natur to be afraid but do try to keep that in mind. Post here or feel free to pm me for any help/answers/support.

 

[Jaano711]

I'm with kel on this one. Because I live 4 hrs from m surgeon, my GP will lance the abscess in the surgery,actually way less painful WITHOUT the local anaesthetic. Almost instantly the throbbing pain stops as the pressure from the abscess is released. She then sends me down to my surgeon who knows what's happening. He sees me in the morning, I go in in the afternoon for an EAU - exploration under anaesthetic, and he does what is needed, sometimes fistulae toy, sometimes setons. I stay in hospital overnight and go home in the morning, as long as everything is ok. I have had this done too many times to count. I think I would average about 5 a year for the past 7 years. I always hate the anaesthetics but it is necessary.

Recovery is quick, I usually am back at work on the Monday after Friday surgery. I always made sure I bought extra long sanitary pads to stick down the back of my nickers to absorb any abscess discharge, and would fold a cotton makeup removal pad in half and wedge it between my butt cheeks where the abscess is.

Always felt way better after surgery than it did before surgery. It got to the stage that I was permanently on flagyl just to try and slow down the occurrence of the abscesses. Other crohns meds - humira did not work on these, and had anaphylactic reaction to remicade.

Good luck xx

 

[kel]

5 a year my God you are a machine.

 

[Jaano711]

In the end the fistulas/ abscesses won, and I had to have a panproctocolectomy That is I now do not have a bottom, it and all the affected tissue were removed and now I have a permanent ilieostomy. My bottom wound has been a bit problematic but nothing like it was when it was all abscessed.

Don't stress. I was a particularly bad case and my ilieostomy is a worse case scenario. But even that is much better than what I was living with.

 

[kel]

Can you sit comfortably? Or will you ever be able to?

 

[sophia30]

Thanks again guys.

Kel, I had a particularly sore weekend and have booked in to see my doctor again. I don't have easy access to see the surgeon as I was only referred last month so waiting on an appointment. The NHS waiting game isn't fun. I have been chasing up, making phone calls, bugging consultant secretaries etc. Apparently I am due to be seen by the surgeon for an exam in April but I need to get to the doc again as something isn't right. I don't have a temp though and don't feel unwell at the moment.

5 abscesses a year must be horrendous!!

 

[xX_LittleMissValentine_Xx]

If it gets too bad and you do get a temperature then go to A&E. I had my abscess drained after being admitted through A&E.

 

[sophia30]

I will do. I'm keeping a very close eye on things and luckily I work at a hospital so I'll be in the right place if things suddenly get bad!

 

[sophia30]

Bit of a grim question, but it is normal for fistulas to drain pus regularly right? There seems to be more of it recently whereas it used to just bleed a lot.

And how do I know if it is internal/external? Probably a stupid question but reading through the forum I seem to be seeing new terms and having more questions to ask! I'm assuming it's external?

 

[xX_LittleMissValentine_Xx]

If it is coming out to the skin, which looks like a sort of spot, then that is external. If it is internal then it is going from intestine to intestine for example. (I think).
I think it is normal for it to drain. But I'm not really sure how you tell the difference between the drainage and the infection, I'm guessing a temperature etc.
I feel like I understand a lot more about fistulas than I used to but I still find them confusing!

 

[sophia30]

Yeah it looks like a little dent in my cheek so it must be an external then!

 

[kel]

Yes they drain pretty regularly. That is not an indication of infection though. Sit in a warm tub a few times a day. This will help drainage and keep the area clean. You are seeing a doctor to treat that right? If it gets infected you're going to be in a world of hurt. Also if the drainage irritates your bottom, put a gauze pad between your cheeks to absorb the drainage and protect your skin. You might need to use a little tape to keep it in place. Also, calmoseptine ointment is extremely good for 'diaper rash'.

I should emphasize this. Calmoseptine is so much better than any other product I would never settle for less. Get it on amazon if you have to believe me you will thank yourself.

 

[sab12345]

I've had Crohn's since 2008 and fistulas/abscesses tend to be my main problem too. I remember being terrified before my first surgery (first ever general anaesthetic etc, got myself really worked up!) but it's honestly fine - I find these things are rarely as bad as you think. My fistulas are apparently quite complicated as they go through both sphincter muscles (I think?!) and I find surgeons tend to be VERY cautious when it comes to any procedure with a risk of incontinence - I'm sure it'd be no different in your case. In my case they decided it wasn't worth the risk of cutting (with Crohn's it's always better not to cut if you can avoid it as the disease can then attack the site of the cut) so they just opened up the fistulas to my skin and in drainage setons. The setons look a bit weird and took a while to adjust to psychologically but now I actually - in a weird kind of way! - quite like them - I find it reassuring to know the fistula is able to drain when necessary and isn't going to form into another abscess, and after a while you'll find you'll forget they're even there.

Sophia30, I'd suggest if you're feeling poorly and can't wait until your scheduled appointment, don't wait until you've got a fever, just go to A&E. I had another abscess recently and had pretty much the whole gastro team trying to move my appointment forward, but our NHS is overcrowded and sometimes it's just not possible! I went to A&E (I tend not to bother with my GP), got admitted as an inpatient and (after a day or two of anxiously waiting) was sent to theatre for the abscess to be drained and a seton inserted. Not very pleasant, but a routine operation for the surgeons and I felt so much better afterwards!

Good luck!