Crohn's Disease Forum » General IBD Discussion » Fistulas, setons, discharge and how to better manage/control the impact on my daily life


01-28-2019, 10:10 PM   #1
Ihatefistulas
 
Join Date: Oct 2016
Fistulas, setons, discharge and how to better manage/control the impact on my daily life

Hi all,

So I have had Crohn's probably most of my adult life, but diagnosed in 2011 when I started developing perianal abscesses with complicated fistulas. I currently have 2 setons in situ (had 3 up until a few months ago, it broke after having a stitch removed, and the specialist wants to keep it out and see what happens). I returned to work about 2years ago, but this is the first summer I have been back full time in a rather physically demanding role. The last few months I have been struggling, I am actually probably the best I have been (well close to), but now I am trying to do this while holding down a full time physically demanding job, days are hitting 42 Celsius or 107 Fahrenheit, and my GP sent me to the colorectal surgeon who basically said it is what it is, and yes it's going to be hard and your going to be in pain with the hot days and physical activity.

The problem is, I actually have financial responsibilities, etc etc which mean changing work is not going to be an option for at least the next few years.

I'm just wondering if anyone has any clues on how to better manage my symptoms and how they are effected by the weather and activity.

Here's where I get graphic. So I have 2 setons but 3 tracts, one seem to be settled into a build and burst cycle (the one that had one of the setons break, it still has a seton in it, but it travels between it an an extension of the tract, not through the bowel, the specialist will not put the seton back unless it fully blocks and forms an abscess). I wear a combine pad, to absorb the blood etc which I am now changing about 5 times a day (was about 3), but it's impossible to keep the area dry. I have tried using zinc oxide cream (suggested by the specialist), but it basically ends up lubricating the setons, which then slide around resulting in pain as the stitches dig into the opening as I walk. I still use the cream now, but keep it away form the actual holes, just to protect the outer skin from breaking down. My specialist said don't use the combine (it's an absorbent pad) as it might be drying out the skin (which in my mind rates as a fairly stupid statement), I tried just putting the pad in the underpants (not between the cheeks), but it was clear by the days end that this just keeps the area more moist and causes things to be worse. I'm basically at a stage now where within 1hr of starting work I am in some pain (the fistula gets aggravated, if it's in a build cycle the area around becomes indurated, and anyone who has had this knows it leads to a vicious cycle of increasing pain and tenderness. By 11am I am noticeably changing my gate, to the point that many at work have asked me what I have done to my leg, why am I limping (the fistulas are all on my left side). By the end of the day, I am not just physically but mentally exhausted from the constant nature of the pain, to the point that I know I am being snappy and irritable. I have broken sleep and wake feeling tired, about to start the process again. Eventually it will discharge a fair amount of blood (usually have gone to the toilet, I can see that it has come from that tract), and it will generally then go down the induration will settle and the phase will eventually continue. This might be a daily cycle or take a few days. The cycle seems reduced when my motions are more loose, I am not sure if that's because the loose material is blocking the tract quicker, or simply the loose motions are following a "flare" type nature (in other words I'm not sure which is cause and which is effect).

I've certainly dealt with more constant pain before, but before I could just say "OK today I just need to do nothing" (as for 5 years I could not work), now the days off become nothing but an attempt to recover and heal as much as possible, and I don't seem to be winning or even holding ground. In winter I seemed to be much better, but now it just feels like I'm sliding ever closer to a cliff edge, and I'm just not sure which will give out first my physical or mental health.

I had to practically beg a GP for pain relief, and that has helped, but it's not enough to remove all pain (nor would I want it to, as I have always feared dependency and figure some pain is the best defence), and I can't help thinking, surely I'm not the only one holding down a full time job in hot weather with draining and somewhat aggravate fistula tracts. Surely I am missing something here and managing the symptoms incorrectly, well I really hope I am. I know I probably need to tweak the pain medication a bit, but I'm more looking for improving the cause.

Can anyone with personal experience please tell me how I can improve the things I am doing. I didn't want to make this post too long, so happy to give more detail if needed.

Thanks in advanced for any advice

Cheers,

Cam
01-29-2019, 08:52 AM   #2
Lisa
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Join Date: Apr 2010
Location: New York

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Cam....having been through multiple fistulas myself, I feel for you.

Are you currently on any medication, and/or has any been suggested by your doctors? Remicade was/is my 'wonder drug' - it caused my fistulas to heal without any surgical intervention.....
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
01-29-2019, 07:59 PM   #3
DCCrohns
 
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Join Date: Jul 2011

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So sorry to hear you are going through this, but I can sympathize. I am currently diverted, so things are much easier but, when I wasn't I bought big boxes of 4x4 gauze (and carried them with me to change throughout the day), in addition to wearing a pad. I had a large fistula and could actually pack some gauze in there which helped.

In addition, Boudreaux's butt paste is a great barrier and will help protect your skin.

As Lisa inquired, I hope you are also able to find some help with medicines. I am currently on Stelara, but starting with Remicade is the best option (you may develop an allergy after a while, like I did). Also, if you are having build ups of infection and then relief, you may benefit from antibiotics. I had to be on for a good chunk of time and now just have a prescription that I can start as soon as I suspect something is developing (you know) so I can start before I even get into see my doc.

Stay strong!
__________________
________________

Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, Humira
Current Meds: Stelara (4 weeks) , Azathioprine (150mg/day)

Surgeries: Fistulotomies & Seton Placements (2011, 2013); Advancement Flap (2013); Temp Loop Ileostomy (2016); Fistula Repair w/ Gracilis Muscle (2016); Fistula Repair (2016); Seton Placement & Stem Cell Harvesting & Stem Cell Placement (2018)
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