Abscess that will NOT heal!

[princessgina]

This is my first post, after lurking here for many years, which should speak to the desperation I feel now. I was diagnosed with Crohn's in my ileum in 1994. Surgery at the Cleveland Clinic in 1996; a resection with an anastomosis that did not hold, which kept me in the hospital for an entire month. Thankfully, I only had minor flare-ups after that drama, and had been in complete remission for the past ten years. A few months ago, as I was preparing to have repairs finally made to the massive abdominal wall defect I sustained from the surgery, I had a flare-up and was hospitalized in January of this year. That was followed by my first ever perirectal abscess and another hospitalization to drain it. That was three months ago and I have been in absolute misery. It will not stop draining and all my GI doc and surgeon do is point the finger at each other. One says it's a surgical problem, the other says, "no," it's medical. The only treatment I am receiving is another course of Flagyl from the surgeon. My GI doc nixed biologics, saying my Crohn's has not progressed and they could do more harm than good. I am not able to even sit without intense pain and don't know where to turn. Does healing always take this long and is it always this painful?

 

[ronroush7]

My abscess, back in 1992, was handled with just medicine for three months. Then ,it got so bad that they drained it. It didn't hesl and a week and a half later I was back in the hospital. They drained it again and this time they gave me medicine strong enough it had to be given through IV. I wonder if you might need something similar. Let us know how you are doing.

 

[princessgina]

Thanks so much! I spent 5 days in the hospital after my abscess was drained, because I was septic. I also was on IV Flagyl, Cipro and Potassium. I was discharged in a very weak condition, but was told I could do anything I wanted to do; live my life normally. That has yet to happen because of all the pain and drainage. I see the nurse practitioner at the GI docs next week. Hoping for some kind of help, or I'm outta there and on to another doctor.

 

[ronroush7]

Thanks so much! I spent 5 days in the hospital after my abscess was drained, because I was septic. I also was on IV Flagyl, Cipro and Potassium. I was discharged in a very weak condition, but was told I could do anything I wanted to do; live my life normally. That has yet to happen because of all the pain and drainage. I see the nurse practitioner at the GI docs next week. Hoping for some kind of help, or I'm outta there and on to another doctor.

Sending support.

 

[danmc]

My abscess was drained at the end of September last year and I ended up missing 5 weeks of work because the pain was so bad.

Then it didn't heal and turned into a fistula. Fistula was operated on January of this year, and still hasn't healed.

I'm glad I found this forum because I see that others are in the same predicament and that this isn't uncommon.

I see my mom every Sunday and she continually asks me "Have you healed yet!!???" "No mom, not yet...not yet..."

 

[princessgina]

People are shocked when I tell them I haven't healed at all after 3 months. I've spent a fortune on gauze squares and the drainage and pain never ends. I would love to know how anyone manages to sit for any period of time. Even the donut pillow doesn't help!

 

[danmc]

Yes, if I would have thought ahead and could see the future I'd have bought the gauze sponges by the case. Have gone through hundreds, maybe thousands of them! :ylol:

 

[drewpalermo]

Last time I had fistulas (started with abscesses) was last year (Sep/Oct). Pretty surprised they came back after years of being in remission with no Purinethol. I've later marked it down to the raw meat I ate for a time. Now I play it safe by cooking my lamb and beef. I've documented my experience with this on my blog: http://healingcrohnsdisease.com/healed-fistulas-without-surgical-intervention/

I also healed my fistulas without any medical intervention (minus the one hospital overnight where the nurses gave me some antibiotics). Have to give props to the diet I stuck with.

 

[princessgina]

Well, tomorrow's the day I see my GI doc one more time, to see if there are any answers for me, three months after my horseshoe abscess and hospitalization for drainage. I wish I could be more optimistic, but the pain and burning just keeps going, and the drainage from my incision is flowing like a river. I think I need an infectious disease specialist or a colo-rectal surgeon, at the very least. Tired of being sick.

 

[ronroush7]

I hope they can find the right answer. Support.

 

[princessgina]

Well, it's been another week, and I have had two more doctor's visits -- without any real direction. After first seeing my GI doc's nurse practitioner, I was referred to a colo-rectal surgeon, even though the surgeon who did my incision and drainage insists my healing issue is a medical one, not a surgical one. Anyway, my insurance would not approve the colo-rectal surgeon out of network and instead sent me to a surgeon who does robotic surgery. I saw him today and he at least was willing to lay out my options for me. The first is a seton drain that I would keep in for at least a year, but with no guarantee that my abscess would eventually heal. The second is to go on long term antibiotics and try to get my Crohn's under control, with the thought that it could encourage abscess healing. I don't know what to do, but we will see what another CT scan tells us next week. I am in so much pain that my GI doc put me back on Norco, just so that I can get through the day. It still hurts to sit, or even sleep on my back, and I am now to the point where I may have to quit my job because of the pain and drain! Sorry to be such a Debbie Downer.

 

[danmc]

Best of luck. Getting bounced around must really suck!

I'm seeing a GI PA tomorrow to discuss treatment for my fistula that won't heal. And I feel like I've developed a hemmorhoid in addition!

I need to start some sort of treatment, this is going on 9 months now that I've had abscess/fistula.

 

[ronroush7]

Well, it's been another week, and I have had two more doctor's visits -- without any real direction. After first seeing my GI doc's nurse practitioner, I was referred to a colo-rectal surgeon, even though the surgeon who did my incision and drainage insists my healing issue is a medical one, not a surgical one. Anyway, my insurance would not approve the colo-rectal surgeon out of network and instead sent me to a surgeon who does robotic surgery. I saw him today and he at least was willing to lay out my options for me. The first is a seton drain that I would keep in for at least a year, but with no guarantee that my abscess would eventually heal. The second is to go on long term antibiotics and try to get my Crohn's under control, with the thought that it could encourage abscess healing. I don't know what to do, but we will see what another CT scan tells us next week. I am in so much pain that my GI doc put me back on Norco, just so that I can get through the day. It still hurts to sit, or even sleep on my back, and I am now to the point where I may have to quit my job because of the pain and drain! Sorry to be such a Debbie Downer.

I hope that they can get you on the road to healing soon.

 

[christina57]

I buy extra large kotex and cut them in to threes it beats paying the high prices for guauze pads maybe this would be a idea for you? Yes fistulars are hard to get rid of its a battle.

 

[danmc]

I buy extra large kotex and cut them in to threes it beats paying the high prices for guauze pads maybe this would be a idea for you? Yes fistulars are hard to get rid of its a battle.

I get 50 gauze pads for about $6, so that's 12 cents a pad. Is using the extra large kotex even cheaper than that? If so I'm so cheap I'd risk buying tampons for myself. Might get some looks but screw 'em! :ylol2:

 

[princessgina]

I get 25 4x4 gauze pads for $2.99 and cut them in half. I still have to wear a panti liner because I have to move from side to side when I sit because of the pain. That can cause drainage to go all over the place. This is like having your period for 4 months straight, with sharp pains replacing cramps! LOL Ladies will understand this!

 

[christina57]

Hi Dan,
Well I get 48 so times 3 is 144 I think for 4 dollars.I am so tired of it all as I am sure you are to.So,you have a fistular? Did you have any surgery? I have a complex fistular had surgery in Jan this year they tried plugs that did not work.SO they farmed me out to a specialist a colorectal doc and she put 2 setons on me last month.Now I have to have another surgery in Sept a advanced flap surgery or a biolift.

 

[christina57]

Hi Princess,
I know how agonizing this is I am sorry your in so much pain.Do you have one fistular or more? I to have to take pain medicine the setons don't always feel good and I have a lot of drainage some days worse than others.I wonder is this night mare ever going to end I been going thru this for quite awhile.They did a catscan and screwed the test up they did stool tests and blood tests and every thing came back okay I mean no Crohn's yet? I am so confused I am sure you are to we need some relief for sure.

 

[danmc]

Hi Dan,
Well I get 48 so times 3 is 144 I think for 4 dollars.I am so tired of it all as I am sure you are to.So,you have a fistular? Did you have any surgery? I have a complex fistular had surgery in Jan this year they tried plugs that did not work.SO they farmed me out to a specialist a colorectal doc and she put 2 setons on me last month.Now I have to have another surgery in Sept a advanced flap surgery or a biolift.

Tired of it? I've been shoving gauze up my butt crack for 8 months now! :stinks:

Oy vey...and sometimes it slips out, like just a few minutes ago at work and I have to make a beeline to the bathroom to shove it back in.

I had an abscess that was operated on 9/27 last year, then that didn't heal and turned into a fistula, and had a fistulotomy on 1/12 this year, and it still hasn't healed. Luckily I haven't had to have any setons (yet!)

CRS recommended a biologic but I don't like how they've handled the treatment discussion so am seeing a gastroenterologist today and hopefully will figure something out.

 

[christina57]

Hi Dan,
Yes,thats aweful especially being at work and it slips out.My colorectal surgeon said there was a 5% chance if I had a fistulotomy I could be incontinent glad that did not happen to you.Whats a biologic mean? Never heard of that I have been told a biolift.

 

[ronroush7]

Probably someone else can explain it better but a biologic is one of the big guns when it comes to medicine for Crohns Disease or UC.

 

[danmc]

Hi Dan,
Yes,thats aweful especially being at work and it slips out.My colorectal surgeon said there was a 5% chance if I had a fistulotomy I could be incontinent glad that did not happen to you.Whats a biologic mean? Never heard of that I have been told a biolift.

My fistula was superficial and could be cut open during the fistulotomy. If it involves the muscle, which mine didn't, they normally won't cut due to the possibility of damage to the sphincter and incontinence. In those cases they may use a seton drain instead.

Biologics are altered genes that target specific parts of the immune system and are given by transfusions or shots. They have some serious risks though for infection or lymphoma, albeit the risks are still quite small overall.

Anyone please feel free to correct or elaborate; this is all new to me and just what I have read.

 

[christina57]

Hi Dan.
I see your fistula was superficial,so that's why they knew you would not have any incontinence problem mine must be I could have incontinent problems so not opting for that right now.I am going for the lift or the flap surgery.Oh your in NY I am in NH hope life is treating you well other wise. Christina

 

[danmc]

The surgeon said that if muscle was involved he wasn't going to cut so as not to risk anything. So I was lucky in that respect.

 

[christina57]

Hi Dan,
That would be the smart thing to do not operate even though its a 5% risk of incontinence my colorectal surgeon likes to tell me all the gloomy things ha.Hope your day went okay at work and not to much a hassle with padding

 

[earthshine]

My nurse gave a script and I get wound care supplies covered by insurance through Binsons

 

[princessgina]

Hi everyone! I waited to post an update until I had something positive to report. This week, after months of being shuffled back and forth between doctors, I finally had my second abscess surgery, this time with a colorectal surgeon at Ohio State University James Surgery Center. He confirmed my first surgery was ineffective and my horseshoe abscess had turned into a fistula. He gave me a double incision and a very tiny, blue seton. I was surprised to discover that the seton gives me no trouble at all; I don't even notice that it's there unless I touch it. (which I was afraid to do for the first several post-op days!) My care was incredibly good, and even though I'm still quite sore and can't sit straight, it does seem that the burning and stabbing pains that I experienced are gone. It still hurts during a trip to the bathroom, so I try to take advantage of warm tub soaks -- and lots of pain meds. My CR cautions that this is just the first step in healing, so I am taking it day by day, but hoping for the best, which I certainly wish for anyone who has had to suffer through anything similar!

 

[ronroush7]

U wish you the best . I had to do sitz baths after each bowel movement when healing from abscesses or fistulas.

 

[princessgina]

Hi folks! I have not been on the forum for months, even though my abscess has healed! I just wanted to make sure it was a genuine recovery, especially since it took so long to happen. Anyway, after suffering through my first surgery in February, 2016, with no relief, I finally was able to connect with a colo-rectal surgeon at Ohio State University. Best thing that ever happened to me! I underwent another surgery in July, where my doctor made 2 incisions and repaired the damage done by my first surgery (by a general surgeon.) This time, my CR surgeon placed a seton between the two incisions instead of the way it's usually done, through the anus. The procedure was done under general anesthesia and I felt no pain. When I went in for a follow-up in two weeks, my surgeon applied a bit of silver nitrate to my incisions and it helped them to heal so quickly. By September, I had the seton removed and it didn't hurt a bit! The fear of more pain is such a concern to so many patients because we endure so much suffering with these horrible abscesses! By early December, I was pronounced completely healed! The only aftereffect is that I still get a bit sore after sitting for any period of time, but my surgeon expects that to subside eventually. I must say that I am so grateful that my life has now changed for the better, and yours can too! My best advice is to echo what many in this forum have already stated: always be under the care of a colo-rectal surgeon, and don't fear the seton -- it works!