Undiagnosed with abscess and fistula

[Polar bear]

Hi, new here. Still undiagnosed if I have Crohn's. Tests were done but is not conclusive. I had abscess in the past and created fistulas. The CRS plan is to put a loose seton to kind of calm the area then later on to insert an anal plug. Is the seton a cure in itself? Is it possible that after the seton has calmed down the area meaning no drainage and everything the fistula will close by itself? Thanks.

 

[Hope345]

Just sending support your way.
Please consider the anti m.a.p. therapy before you do anything else. We are about to do it for our daughter and it has helped so many..
it is still in its trial stage for FDA approval, but there are GI's doing it and can give the information to your GI. All I know so far is that it involves 3 antibiotics over a couple years.

It may not be the answer for you, but worth the research
take care

 

[Polar bear]

Thanks for your reply. Once I got your post, I researched and quite surprised that there is this M.A.P. therapy. I will definitely look into it too. I currently have abscess and fistulas that are really really painful. I don't think I will be able to put on hold the drainage and the putting in of the draining seton much longer because it is really really really so painful. Please keep me posted how it goes with your daughter, and I sure wish her a speedy recovery.

 

[Polar bear]

Had 2 setons put in last week. It is so painful. How long before I can find relief? Cant walk straight, can't sit either. It is a constant stinging pain. Is there an ointment I can use to speed up healing? I have been keeping it clean and sitz bath 2 to 3 times a day, it helps a bit but the stinging pain is still there. Is this normal? I have lots of drainage, yellowish green stuff but no blood. The skin also itches, is this normal too? Does it ever get comfortable? How long before I can find any relief?

 

[Sailorluna]

Polar bear it can take a few weeks to get close to normal. I had pain off and on for a long time. Mostly when the "d" is bad. I like to use calmoseptine cream to cool it some. It protects the skin around it. I get it at Walgreens behind the counter.

I find sitting on a heating pad is also helpful.

Hope you are starting to feel better.

 

[Polar bear]

Thanks Sailorluna!. I really hope I find relief in the coming days. The pain is more bearable compared to the pain when I had my abscess, but ARGHHH it is so annoying and depressing. I try to keep my mind off it, but the pain is very persistent and I just cant shake it off. Oxycodone helps but I get so constipated, that I have to take 2 stool softener to counter it. I have not been diagnosed with Crohn's yet, the tests are not conclusive according to my CRS. That being said, is the treatment plan for fistulas if you have Crohns different if you don't have Crohns?. I had 2 setons in place, and the plan is to put fistula plugs after 3 to 4 months. If it doe not work then flap surgery. I am getting worried that it has been mostly surgery, had I have Crohns are this procedures also the treatment plan?

 

[Sailorluna]

Fistulas are treated differently if you have Crohn's as it can slow and interrupt healing. There are options for people without Crohn's that would never be offered to those of us with it. My surgeon will not consider plugs or flap surgery. I get a seton and thats it.

I think that surgical options are also impacted by how severe the disease in the area is, mine is quite severe so no surgical options beyond setons. Some people are even able to have the whole thing removed, but I think that is only for the very healthy folks. Also placement of the fistula will limit options for fear of causing lack of muscle control down there.

 

[Polar bear]

Thanks for your reply. I got the results of the tests and was told that it is negative for IBD, and UC, they cannot rule out Crohns because they need to do a colonoscopy which I was told was not adviseable at this time because of the 2 setons that I currently have. Since I am having pain with my setons, I was told that it is going to be brutal to do a colonoscopy. I would really like to rule out Crohns first before I proceed with the plug. I just do not know how it works. Say they took out the seton in 3 to 4 months time, can I just leave it as it is? Is something wrong going to happen if I wait for a colonoscopy to be done first? If the seton is removed and no surgical procedure is done, is an abscess expected to happen? I know I should have this questions earlier but I kind of spaced out, my next appointment is in a months time and I just cant relax and kept on thinking about it.

 

[Sailorluna]

A fistula without a seton can close and where (and how) it closes will affect chances of further abscesses. If it closes so that the it still fills with icky stuff and can not drain it makes for a good chance of infection and need for draining. I have had a rectal fistula with seton in place for over 2 years and you would think it would be healed and no worries of closing but I still can not get it removed, yet my vaginal fistula only had one for a couple months and has been fine since then.

I am not sure why they are telling you the scope will be a problem... they can put you out for it. I have had scopes while in pain. Don't feel bad about not asking your questions at the time it is such an unnerving time it is easy to forget stuff. It is best to bring a list of questions or a companion to the appointment to help remember.

Good luck, I hope you heal quickly.

 

[Polar bear]

Thanks Sailorluna. The doctor is scheduling me for a colonoscopy. I told them that I would like to rule out Crohn's first before they do anything else. And that is another thing, I had two fistulas and 2 setons in, one of the fistula is a good candidate for plug the other is too up high they have not decided what to do with it yet. Right now, I am leaning toward just leaving the seton in. The doctor said they started with a 90% with the plug, now they are at 50-50 percent chance for the plug. So, I am not really leaning towards doing that. If I have the seton and left it for long, is there going to be a complication down the road? The skin around one of my seton is raised and hard, and was told that they are scar tissues. How do I get rid of the scar tissues? I am still doing regular sitz baths and massaging the area a bit to induce drainage. The amount of my drainage on one of the seton is totally gone, but on the other one it has not changed a bit. Yellowish greenish stuff. Will it ever stop draining? Again, thanks for helping and listening.

 

[Daisy G]

Hi Polar bear
I have Crohn's with a history of perianal disease have had multiple fistulae in the past, have had a successful fistula plug procedure done a few years ago.

At present I have complex fistulae (different location) and currently have two setons in place one since July 2012 and the second since December 2012. There is still discharge not heaps though but I've been told by the CRS that as long as the setons are in place drainage will continue to occur. I have developed scar tissue and I have not found a way to avoid that. Do continue with the sitz baths I still do those even after all the time.

I wish you all the best with the healing of your fistulae.

 

[Polar bear]

Currently having issues since yesterday. The scar tissues around my seton looked like a blister filled with blood and pus. It is hard to the touch and it bleeds when I press on it. It does not hurt like an abscess, it hurts only because it rubs against the other side. I looked in the mirror and it does not look any different except for that blister around the seton. My next appointment is in 3 weeks time, I will try and get it checked next week if it does not subside.

@daisy Thanks for your post! You mentioned that you had a successful plug surgery a few years ago. did you ever had fistula issue from where they put the plug in? How is the pain post surgery? When I had my 2 setons, I was in so much pain for the first 6 weeks, I only find relief a little later then I was having issues again. This is why I am really kind of nervous with any form of surgery, I don't seem to rebound quickly. 8 weeks post op, I still cannot sit straight and I still can not walk straight. No complaints though, it is still way better than the horrendous abscess pain!!

 

[justbreathe8]

Polar bear- did you schedule your colonoscopy? I had two fistulas and two setons placed on dec 10, and have my follow up later on today. I am also undiagnosed and my CR told me I had to wait until things settled down to get an ok for a colonoscopy. I'm super nervous and hoping that he gives me the go ahead today so I can figure all this out! Also, how do you I ow which seton the drainage is coming from. I also have one that is higher up and he said that one will have to stay in longer then the lower one. But they both come through the same two holes so Im not sure which the drainage is coming from. About 3 hours After I have a BM is when i feel "swelling" and then the most drainage of the day comes and then the swelling goes away and it all happens again the next day. My CR said that's normal since one of the setons goes through the rectum. But I wasn't sure if maybe there was a way to tell if the other seton is better?

 

[Polar bear]

Hi Justbreathe8! My CRS wanted me to get a colonoscopy since my pain has already subsided. I am kind of delaying it a bit because I do not want to have too much going on down there, I am scared that I may be in pain again after the procedure. I use 4 x 4 gauze to catch any drainage and I can see too separate droplets so I know that both setons are draining though one has more than the other. If I don't see any drainage, I stayed longer in sitz bath and tried to move the seton around. I also have swelling an hour after BM, then will subside after draining. Did they tell you what they plan to do after they remove the seton?

 

[justbreathe8]

Ooh okay, my two setons are almost right on top of eachother so there is no separation in drainage. Yah, after Im done with each sitz bath (I try to do 4 a day) I move the setons to try to get as much drainage as possible. The CR told me I could take ib profin and that seems to help the drainage come faster and thus have the swelling go away sooner after a BM. I actually saw the CR yesterday in the morning about 2 hours after a BM so when he did the exam and pushed on the area, pus came out. He said he was disappointed bc the last time I was in there, nothing came out. But I explained to him that my last appointment was at 330 in the afternoon and nothing came out because it had all drained by then. Not sure if he understood what I meant or not. But either way, he scheduled me for surgery on Tuesday. He said he is going to remove some of the scar tissue and open up the drainage hole a little bit so it drains better. My GI will also be in the operating room and I will also have a colonoscopy before that to see if I have crohns. He will also look at the site of my highest seton and if the tissue that surrounds it is healthy, he will take it out and do the reconstruction. He didn't tell me the name of the proceedure, he just referred to it as reconstruction. And he said he will leave the lower seton in so that it can drain through there. i feel like my future is riding on Tuesdays surgery so I am extremely nervous. I'm praying that the tissue looks good so he can take the one seton out and I can start the healing process.

 

[justbreathe8]

I originally Thot I would have the colonoscopy in a different office and let me CR know the results. He is going to have it done the same day as the surgery so that if the D goes in the fistula tracts or abscess he can clean it out when he is in there for the surgery. It makes me feel better because I was scared of getting a colonoscopy and having some kind of infection because of it. Idk this whole thing is a mess and worry seems to get the best of me most days.

 

[Polar bear]

Good luck on your coming surgery/colonoscopy. I hope all goes well and be on the road to healing. Please keep us updated how it goes.

 

[justbreathe8]

Thank you, will do