Fistulising crohns, what's to expect when not in remission

Hi all,

I have just signed up. I was diagnosed with crohn's about 5 years ago, after about 12 months.

I had a question probably for people who have complicated fistulas and are not in remission, but I think I should give some background.

It all started with a perianal abscess that my GP gave me antibiotics for, then a second dose of antibiotics, and eventually I decided I needed to see another GP and he told me to go to emergency. The abscess was drained, but then after healing built again, after an MRI it was confirmed I had a fistula which was too high in the sphincter muscle to lay fully open, but the surgeon opened up as much as he could, which again healed and built again. A seton was added, which blocked and a second and then a third seton was put in. At this stage he started to suspect crohns.

During a colonoscopy some granulation was found near my appendix and I was then referred to a GI and eventually was diagnosed with crohns about 12 months in.

I was put on Humira and ciprofloxicin, but things never settled (basically a cycle of setons blocking filling up and then clearing itself through the seton). Imuran was added and things seemed to start to settle (although not completely). Eventually the setons were removed and then things just went to a cycle of building and bursting (as the seton holes tried to close).

I sought a second opinion, and flew interstate to see someone with a good reputation with regard to fistulising crohns, he wanted to see more surgical and medical intervention. My thioprine levels were checked and I found out I was a "shunter", and allapurinol was added. Two setons were put back in, and then eventually compassionate dose of Humira (weekly instead of fortnightly).

About 9 months later I was put in for a trial of hyperbaric chamber treatment (two seperate 6 week sessions, and the setons had to be removed half way through the the treatment as the hope was to close the fistulas). Two tracts did close, but I soon went into a cycle of build and burst from the one remaining hole.

This has continued until 2 months ago it built, but didn't burst and I ended up back in hospital with two seperate surgeries, 3 different IV antibiotics and two setons.

Due to the urgency of this surgery I ended up with a new colorectal surgeon. He was great and has an interest in crohns patients specifically, so I have decided to stay with him.

I had a post operation appointment and when explaining what I have gone through for the last 6 years, he seemed shocked and said that I shouldn't be having this build/burst cycle. Things should settle with the setons in, inflammation should go away and basically life should return to near normal. He is suggesting I should probably consider life long setons, but that should not mean the debilitation I have been dealing with.

Basically at 40 years old, I am unable to work, constantly in pain (as in every day for the last 6 years), walk with a limp as it hurts as I walk, can only walk short distances and then need to lay down to get things to settle, sit on a lean with a pillow, and can't sit for long, need to lay down regularly throughout the day. On good days I need to take panadeine forte and during the building stages endone, and fentanyl patches, which still doesn't allow me to do normal daily things.

If you have read so far, your probably thinking, this guy is writing an essay :ybiggrin:, sorry I just wanted to give my background before asking a question, hopefully it doesn't come across as a big "woe is me", I've read plenty of stories of people in much worse situations, so that's certainly not what I am trying to do.

What I am trying to get my head around though is have I been accepting things as just being the way they are when you have fistulising crohns, when I should be getting a better outcome? If you have fistulising crohns that won't go into remission, is what I am describing normal? Basically the best I have had in the time is minimal drainage but still induration and pain which increases with activity.

I am now waiting on trough tests for Humira to see if the recent surgery was due to medication failing or physical blockage due to scar tissue.

Thank you in advanced for any advice,

Cameron

Welcome. I am sorry for all you are going through. You may need to change biologics but you will probably know better after the trough test. Let us know how you are and how the text turns out.

I have severe fistulising Crohn's. I have had an abscess that put me in the hospital for 5 months on IV antibiotics, and recurring fistulas that were too numerous to use setons on. I was never in that much pain, could walk and sit normally. I was more worried about things like sepsis. As soon as some fistulas closed, more would open up. After three years I switched medications and with Imuran and Remicade, they closed within a month, and I've been in deep remission for over two years now.
Have you had a MRI? I'm curious about the leg pain, maybe you have a fistula that has tracked to your hip? Have you tried sitz baths? I found the hot water soothing. Hope you find something that works. :ghug:

Amen

Thanks for the kind words and fast replies.

This new colorectal surgeon has me questioning everything, and I am starting to wonder if I am being mismanaged by my GI (basically him focusing on the medication side, but failing to see that I needed to go back to the surgeon). I left his office excited that perhaps I can get back to normal life, but also really annoyed that perhaps this could have happened years ago.

Tuff said:

I have severe fistulising Crohn's. I have had an abscess that put me in the hospital for 5 months on IV antibiotics, and recurring fistulas that were too numerous to use setons on. I was never in that much pain, could walk and sit normally. I was more worried about things like sepsis. As soon as some fistulas closed, more would open up. After three years I switched medications and with Imuran and Remicade, they closed within a month, and I've been in deep remission for over two years now.
Have you had a MRI? I'm curious about the leg pain, maybe you have a fistula that has tracked to your hip? Have you tried sitz baths? I found the hot water soothing. Hope you find something that works. :ghug:

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Thank you for sharing your experience, this is exactly the information I am looking for. The most I have spent in hospital is 2 weeks (for the IV antibiotics and pain management), I couldn't even imagine 5 months, but it is always initially supposed to be one day.

The last MRI I had was 2 years ago, this showed that there was pockets, but they were connecting through to the remaining open tract. I was found not to be at therapeutic dose levels for the imuran after adding the allopurinol, so I went from 25mg to 50mg (allopurinol keeps the imuran in your system so you don't need as much as normal, I was on 200mg before the allopurinol was added).

Sorry I wasn't as clear in explaining my limp, there is no pain in my leg (although new people often ask me what I have done to my knee), the limp has developed as a way of achieving a gait that minimises the pain. I did have an ultrasound done on my inner thigh a few years back, as there seemed to be a lump and vein that enlarges when the abscess is building, and I was hoping this may have been a pocket of infection missed on the MRI's, but this turned out to be just what I think they call a lipoma (basically a fatty deposit).

Yes I do do sitz baths, I also shower after every BM

Thanks,

Cameron

Tuff said:

I was never in that much pain, could walk and sit normally.

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Can I touch on this and get a bit more insight as to "what is normal" as far as yours and others experience? This is probably the main reason for my post, as I am now questioning what I have accepted as "normal" for someone who has not hit that magic remission we all hope for.

Here is a bit more detail on how my abscess and fistula reacts.

Hospital:

In the past when it has required surgical draining, I present to Emergency and am put on morphine until surgery can be arranged, I max out on endone, panadeine forte and morphine (but it is enough to keep me climbing the walls). Post surgery the first few hours are good, relatively minimal pain other than the fact that I have been cut open, which is controlled by endone and panadeine forte. Within 12 hours the area says "you want a fight, let's fight", increased pain, the complete area gets red and hot, and hard (what they call induration to most of my cheek). The first time I had day surgery, got home and was rushed back to hospital and stayed for 2 weeks. This most recent stay in hospital, my surgeon was convinced he had missed a pocket of infection in his first surgery. He got bloods (which only showed CRP levels of 16, which is only a little high), put me on IV antibiotics and scheduled a second surgery even though the CRP was not as high as he expected. He was surprised not to find any missed pocket, but took out some scar tissue which he suspected could hide future pockets after healing. Over the week, the induration settles, pain is managed, IV's antibiotics are finished, and I am released with endone and panadeine forte for pain.

Everyday life- a good day:

There is minimal drainage, there is redness and induration around the seton hole only, the rest of the cheek is soft tissue. I can sit on a pillow, leaning to the side, needing to stand up every few minutes, prolonged periods of sitting means I need to lay down for a while to settle the pain. I can walk around, as an example if I went with my wife to the supermarket, I could walk 3/4 of the isles with her, but then have to return to the car and lay down. Pain is managed with panadeine forte. If I push myself (sometimes life has to happen), the area gets aggressive, and I tend to have more blockages, and obviously increased pain.

Everyday life- a bad day

I am in bed, if I have a seton, it is temporarily blocking and pressure is building, if I have no seton the tract has blocked or tried to heal and the abscess is filling. Redness expands and the cheek is hot, induration expands to cover the area of the pocket. Hopefully I have predicted the cycle (usually a reduction in drainage is a sign) and already have the fentanyl patch on, at its worst endone and panadeine forte is not enough.

Any experiences greatly appreciated.

Thanks,

Cameron

I was in an acute care hospital with my abscess for six weeks, until it burst on its own. It was a horseshoe abscess high up, and surgery would have made me incontinent. Looking back, I was in bad pain for a week before it burst on its own. Sorry, forgot about that. I was on morphine. I had surgery to clean the wound. Afterwards, they would not let me go home, and I went to a long term care hospital for the remainder. The reason being, they packed the wound so that it would heal from the inside out, and would not recur. I had the packing changed I think daily, in the beginning. I was on IV antibiotics four times a day, and a nurse will only come to your house three times a day. So I was stuck there. I was released when the abscess holes closed up.
Has your doctor talked to you about a catheter to drain it, instead of a seton. https://consumer.healthday.com/gast...-complications-of-crohn-s-disease-506149.html
I think I would rather try that, than have repeated surgery. As to "what is normal", I was pain free after the abscess healed up, even though I had fistulas for a few years after that. I'm worried about the amount of pain killers you are on. I know of two people who got addicted to Oxys after a back injury, and it ruined their life. Be careful.

Tuff said:

I was in an acute care hospital with my abscess for six weeks, until it burst on its own. It was a horseshoe abscess high up, and surgery would have made me incontinent. Looking back, I was in bad pain for a week before it burst on its own. Sorry, forgot about that. I was on morphine. I had surgery to clean the wound. Afterwards, they would not let me go home, and I went to a long term care hospital for the remainder. The reason being, they packed the wound so that it would heal from the inside out, and would not recur. I had the packing changed I think daily, in the beginning. I was on IV antibiotics four times a day, and a nurse will only come to your house three times a day. So I was stuck there. I was released when the abscess holes closed up.
Has your doctor talked to you about a catheter to drain it, instead of a seton. https://consumer.healthday.com/gast...-complications-of-crohn-s-disease-506149.html
I think I would rather try that, than have repeated surgery. As to "what is normal", I was pain free after the abscess healed up, even though I had fistulas for a few years after that. I'm worried about the amount of pain killers you are on. I know of two people who got addicted to Oxys after a back injury, and it ruined their life. Be careful.

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Thanks again for your reply and info about the catheter drainage, I think the plan now is leave the setons in, my surgeon said the less surgery the better, but that shouldn't mean dealing with a build burst cycle (I think he suspects a hidden tract, so he will be doing an MRI if this happens again).

I also fear dependence, initially I tried refusing to take the pain meds, but this wasn't a realistic plan (constantly in stress, no sleep, etc, which was just making the crohns worse), at the moment I deal with more pain than I probably should (my doctor wanted to keep me on fentanyl patches), I have chosen consistent panadeine forte to reduce and delay the need for endone and fentanyl.

I really hope my new surgeon is right and he can get things to settle down.

@Ihatefistulas I used to have two setons, at times when it's blocked my doctor suggested while doing sitz bath about 5 minutes in to massage the tract lightly ( I do about 4 to 5 strokes only)from the anus to the outside opening of the seton. It usually helped me. I also apply coconut oil after sitz bath. I had two setons for about 18 months and it fell by itself a day apart. From my last MRE one of the fistula closed by itself but the other one remained open. To this day, I still do the sitz bath, the massage and the coconut oil. This is from my personal experience and is not meant as a medical advise. I hope you find relief soon.

Polar bear said:

@Ihatefistulas I used to have two setons, at times when it's blocked my doctor suggested while doing sitz bath about 5 minutes in to massage the tract lightly ( I do about 4 to 5 strokes only)from the anus to the outside opening of the seton. It usually helped me. I also apply coconut oil after sitz bath. I had two setons for about 18 months and it fell by itself a day apart. From my last MRE one of the fistula closed by itself but the other one remained open. To this day, I still do the sitz bath, the massage and the coconut oil. This is from my personal experience and is not meant as a medical advise. I hope you find relief soon.

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Thank you very much for the advice, what you say sounds logical, and I have heard of the benefits of coconut oil, although I have never tried it. I see my surgeon again next week, so I will bring it up with him just to double check. I have only just changed over to this surgeon, but he seems very easy to talk to, and I'm sure if it can't hurt he will be all for me using the coconut oil, although I think my wife will insist I buy a new bottle and not store it in the kitchen

Hi all,

Just wanted to give an update. Firstly thank you again for the replies, they helped me confirm where I was at was not right.

So I did get the Humira trough test, and my trough levels were below therapeutic (if memory serves me well I think it was 1.4 with therapeutic being 7, although I could have that wrong, but it was below therapeutic).

My specialist applied for compassionate dose, and I started on double dose Humira (once per week). With the surgery, and eventually when the extra Humira took effect, things drastically improved.

My specialist says I am not in remission yet, but I think I am as close as you can get without being in remission. I still have the setons in, but apart from being sore by the end of the day, and still having periods of discharge, I hardly know they are there. Certainly nothing compared to what I was previously dealing with.

I returned to work and after a few months at 25hrs per week, I have now been back to 40hrs per week for 3 weeks. My job is physically demanding, so this is a massive result and shows to me how much things have improved.

I would certainly recommend anyone living how I was to say to your specialist "This is not normal!!". Get trough tests, go back to see a colorectal surgeon and get a second opinion if your not seeing improvement.

In a way I am happy to be where I am now, and hopeful of the future, but I also think of the 4+ years of constant pain, loss of freedom, etc, etc. that I possibly could have avoided if my specialists had simply ordered a trough test.

I wish everyone the best,

Cameron

I feel you bro, I had one that lasted for one year and a half with cipro and remicade every two weeks it finally gave up and healed. But I recently had one my GI gave me cipro and flagel and it gave up and healed up in two weeks