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07-13-2012, 08:01 AM   #1
deb123
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Tail end fistula

Hi,

just had a call from Gastro doctor with results of MRI. Ive got fistulas in my tail end and he is going to discuss with surgeons about possible surgery to put setons in. If they dont think it necessary then i have to start Infliximab or Adalimumab soon.

Im a bit gob smacked. The pain im experiencing is on right side under rib cage, along with groin and leg pains, almost like sciatica.
Any advice, or words of experience in this matter would be gratefully received, so that i can make some sense of it.
07-13-2012, 01:41 PM   #2
Mark63
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Hi Deb,

Sorry to hear that you find yourself in this situation. I've been in a similar boat for a long time now. Drainage, laying open, setons, Azathioprine, Infliximab, and currently Humira. Saw the Surgeons again last week and am now looking at surgery number eleven. Having stated my credentials, let's get on to the advice.

The anti TNF drugs work well for many people in our situation. Infliximab in particular is thought to work well for fistulas. I started the drug before a seton was put in place and found that things would start to heal, then an abscess would form. This meant that the drug had to be stopped while the antibiotics were used to get the abscess under control. Back on the infliximab and the whole cycle started again. This stop-start treatment lead to a build-up of antibodies to infliximab and a reaction every time I had an infusion, so the treatment had to be stopped.

It seems that best practice would be to have a seton in place before starting the anti TNF drugs.

I have had a lot of pain in left leg. This is neuropathic pain and does not respond well to even quite strong traditional pain killers. Eventually, I managds to get a prescription for 25mg of Amityiptyline a day. After three or four weeks it really started to help. The pain is now well under control.

If there are any specific question that you have please get in touch.

Wishing you well.


Mark
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07-14-2012, 02:32 AM   #3
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Thanks for your advice Mark. I'm really not that educated on Crohns, only from my experiences with it. I work on a need to know basis. If i deal with it as it comes, and push any worries away it helps keep me sane!! sort of !

I just cant get my head around what ive been told ive got and my symptoms.
I dont really have terrible pain when i go to the loo, theres no blood, diarrhea, if anything i get constipated. The pain and discomfort is just under ribcage, and in my pelvis, hips, right thigh and in feet and toes. Its quite uncomfortable to walk. I keep getting feverish then the chills, especially at night. I really expected them to find a partial blockage.

Do these symptoms tie in with you, or could i possibly have something else going on.
Also do you think i could change my diet in anyway to help with healing and management?

Any advice from all greatly appreciated
07-14-2012, 07:28 AM   #4
Mark63
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Hi Deb,

We all have to find our own way of dealing with problems like Crohn's. Whatever you feel works for you carry on with it. I tend to tackle things rather more head-on.

Crohn's manifests its self differently in different people and its presentation can change in a single individual over time. When I first had problems, over twenty years ago, it was mainly diarrhoea, stomach cramps and weight loss. This was mis-diagnosed and treated as IBS. It's only when they took a biopsy did they confirm the diagnosis and start appropriate treatment. I then had more than ten years, drug free and in remission. Seven years ago I developed what I everybody thought was a simple abscess on my backside. As there were no other obvious symptoms as had been seen before, this wasn't treated as Crohn's and once again lack of quick and correct diagnosis leave us where we are today.

The symptoms that you describe all certainly fit with what I and others that I've read about have experienced with Crohn's. For me, pain going to the toilet, no. Fresh blood a little, but this is due to the fistula. Constipation, no, but I do take in quite a lot of fibre as I find this helps me. With others it can be the opposite. Pain under the ribs, no. Pain in the Pelvis/sacroiliac and left thigh, yes. The sacroiliac can be involved in some Crohn's patients. Had an MRI for this earlier in the year, but no problem found. Much improved with the Amitiptyline. Fever/chills at night, no. This is something that you need to tell the Doctors about as it can be a sign of an infection that requires treatment.

I'm assuming that you have had a full work-up of investigations such as MRI, endoscopyu, bloods etc else they would not be talking about anti TNF's and setons? If you continue to experience pain in particular places then you need to be persistent in raising this with you consultants. These things need investigating, even if they don't find anything.

As for diet, I eat pretty much what I like. I also have gastritis and duodonitis, so take Esomeprazole and Gaviscon Advance on a daily basis. I do seem to feel better if I avoid too much fatty food. I have experimented with cutting out, wheat, dairy, caffeine and alcohol. None of these is excluded from my diet, but at home I get by without dairy milk and caffeine. There's no substitute for fresh bread, so that tends to be a weekend treat. Likewise a glass of wine with a meal and the occasional pint of cider. Beer used to be a big aprt of my life when I was younger, but I avoid it now.

Hope that's of some help.


Mark
07-14-2012, 07:46 AM   #5
deb123
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I have to see Gastro team this week, so i shall write it all down and see where we go from there.
Extremely grateful for your help
07-14-2012, 08:44 AM   #6
Mark63
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No problem. Let us know how you get on.
07-16-2012, 12:08 PM   #7
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Hi Deb,
I had a seton put in just last month from my rectum to my perineum. Another tract is now draining beside it as well so we'll see what my surgeon says soon. I have a seton stitch and it looks just like a looped piercing! I was pretty shocked when I got home from the hospital and saw this thing dangling! So there is your warning lol! I also have night sweats/fevers and it is a definite sign of infection. Are you on antibiotics? I was on remicade for many years and had a reaction and am now on Humira. They give me cipro and flagyl for antibiotics but I don't do well on the flagyl so they just gave me a round of cipro. Good luck and ask anything!
07-16-2012, 02:12 PM   #8
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Hi Smallfry,

thanks for your post, when you had your seton put in place was it under general anesthetic, or local? How long was it before you were able to get about ie work. When you said you had sweats and fevers being a sign of infection, do you mean that you had an abscess or do fistulas get infected?
Im sorry if these are silly questions, but i just dont know.

The sweats are getting worse, and i get so tired, i have to rest up after work as one bum cheek,groin and leg ache so much. Its getting to the stage where im limping at the end of the day.
07-16-2012, 02:47 PM   #9
Sailorluna
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Deb,
Do you have a fever?
Fistulas can get stopped up and the puss and icky stuff that normally would pass through will build up and become an abscess. Because of my fistulas I have been told that you can not take fevers lightly. I have been in four times for drainage and fever was a primary symptom each time. And fatigue is a big sign of infection for me.

Is your fistula draining?
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Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
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currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
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07-16-2012, 03:11 PM   #10
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Hi Sailor Lunar,

I havent got a thermometer at home to take my temp - i know i know im stupid!
I keep getting really sweaty, and feel really hot, but it only really lasts a little while.
The night are worst, i wake up really sweaty, and then i ditch the duvet and pull on my silk throw, then i wake up freezing and so the cycle goes on.
I get real tired by 2 in the afternoon, im like an old lady i have to grab 40 winks before i get the kids.
I dont really get this fistula thing - i have no sores or pus coming out of anywhere, and no burning or itching at that end - just the aching butt cheek, groin, leg especially thigh.
I was surprised by diagnosis, the Gastro Dr phoned and said the MRI shows inflamation and fistulas at my tail end, and hes going to get an appointment to see me this week.
Are they putting me in danger, should i call and pester?
My appetite is good, and i dont feel really sick just uncomfortable with aching and sweats.
07-16-2012, 03:36 PM   #11
Mark63
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Deb,

From all that you have said, you should pester your GI for an appointment sooner rather than later. Ifyou start to feel generally unwell and the other symptoms persist, you should consider going to the ER if the GI can't see you.

Drainage and fitting setons is usually done under general aesthetic. Recovery time depends on how much work they have to do. Based on past experience it's take anything between one and three weeks to get back to work. It all depends on your job and how you react. For me one of the worst things is having to sit at a desk all day.

Mark
07-16-2012, 05:57 PM   #12
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You really should get a thermometer. Did you tell the gi about the night sweats and such? Hot and cold cycles sounds like infection to me.

Generally a fistula has a start and an end - ie starts in the rectum and ends in your butt cheek. For me I didn't know it was going on until I had a painful lump near my rectum. When the lump burst it left me with a tunnel from one end to the other, Perhaps yours is just not that far along.

Are you taking antibiotics?
When is your apt?

My GI refuses to see me for abscess/fistula they insist on me going directly to a colorectal surgeon , so it seems strange that they are making you wait.
07-17-2012, 12:56 AM   #13
deb123
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I will definitely get a thermometer today.
Im totally shattered again today, disrupted nights sleep with the hold and cold. Im noticing that the ache in my butt cheek comes as soon as i sit down, and it gets so much better when i lie down.
I do get a swelling down there, to the side of my anus in my groin but i was told by my GP that it was a Bath cyst, i think thats what he called it, and lots of people get them. Its not really painful, just feels like a swolled tissue, or muscle.
Im not on any antibiotics, and i waiting on a call for an appointment.
If they dont call today, i will ring them.
Thanks everybody for all your advice - joining this forum is so helpful, friends and family havent been there so they dont understand, and i dont like to be graphic about anything because that is too much info for most!!
07-17-2012, 07:22 AM   #14
Sailorluna
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Deb it really sounds like an abscess and not a cyst from the rest of what you say. My experience with gps is that they don't always know what they are looking at with this stuff.

Hot baths/heating pads should help with the pain and draw out any infection.
07-17-2012, 08:16 AM   #15
smallfry
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Hey Deb,
ya get a thermom!! I'm thinking you have a fever and maybe your abscessing?? Sorry to say but I'm thinking an ER visit is in order. I ended up with a white count of 20 when 4 to 10 normal because I waited and didn't pester. Was only stuck in the hospital for 3 days but they were worried I was going septic and I worry for you!
07-17-2012, 08:22 AM   #16
smallfry
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oh and to your earlier questions. I am not working at the moment, on sick leave. It was abscessed with multiple tracts. Now I have two fistulae draining, one with seton, one without. It was done under anesthetic.
07-18-2012, 01:22 AM   #17
deb123
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Morning,

Well i got a new thermometer, and took my temp about four times last night when i woke up burning and sweaty, but it only registered 36.5 so i havent got a temp. Thats a good thing, but i wish this hot cold thing keep disrupting my sleep. My butt cheek throbs whenever i sit down still, and by end of yesterday i am almost develop a limp. My bum,leg and groin ache so bad. When i lie down and put my feet up, the swelling in groin goes down.

Ive phoned GI nurse hotline to pester for appointment, so i'll see if she calls back today.

I have some ciprofloxacin 500mg tabs in cupboard, do you think i should take some of them?
07-18-2012, 02:19 AM   #18
Mark63
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Hi Deb,

A couple of things. Thermometers are never perfectly accurate, but they should give pretty consistent readings if you use it the same way every time. Try taking your temperature several times during the day and just get an idea for what readings are right for you and that thermometer. Your temperature naturally varies by a small amount during the day, so don't worry too much about that.

If the GI Nurse does not get back to you, then you really should get some help, even if it's from you GP. Easier said than done I know, but from past experience you don't have to have a high temperature in the early stages of infection. All the other symptoms that you describe also suggest that you have an infection. This will have to be dealt with using antibiotics and/or surgery before they can start the anti TNF drugs.

I have both Cipro and Metronidazole at home for emergencies. Both the GI doc and the GP are ok with me starting my own treatment and then getting in touch with them. This approach has been based on the trust and experience that has been built-up between us over the last 7 years. I'm sure that there are other Docs out there who would would not be quite so happy with this. Please try and get some professional help before self medicating.

Hope you get some help soon and that things improve for you.

Mark
07-18-2012, 09:38 AM   #19
deb123
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GI Nurse called today, and ive got appointment for this Friday. She has read MRI report and says there is multi tracts and inflamation, but no abscess or collection of fluid, so no pus/infection?
Saying that, she says the MRI was done at end of June, so she thinks it would be wise to go down antibiotic route, but not to self perscribe, and hold off until i see Doc

My butt cheek is so painful now, and with still going to work and over compensating to ease pressure in my butt my lower back also hurts now!! Just give me the meds!!
07-30-2012, 08:54 PM   #20
Avw
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So sorry to hear you have to go through all this mess, too. As far as the MRI readings still being accurate... I'll just say that my abscesses and fistulas change, move, shift, track, whatever... rather quickly. Just because the MRI showed no abscess at the time, doesn't mean it's not beginning to abscess now. Your symptoms would definitely indicate an abscess. My lifesaver is epsom salt baths! Hot or warm, however you like. I prefer hot, I feel it helps in drawing out the infection and eases the abscess to the surface, making it easier for my surgeon to find and drain. I'm also quite familiar with the horribly sore butt cheek. For the first month or two I could manage by always leaning to one side when sitting, or folding my legs underneath me at my desk so as to not have any weight on my right cheek. Perhaps even a donut or cushion might help. Definitely take frequent breaks to get up and move around, or do whatever work you can standing. But I agree with above postings- You should definitely get on some antibiotics ASAP! And I'm also not sure why your doc is hesitating to send you to a colorectal surgeon, as these things can get out of hand rather quickly. Just find yourself a good surgeon whom you feel comfortable with and is flexible with making emergency appointments and or procedures for you, as these things tend to be ongoing.

Best of luck, and I hope you can get some relief for your rear soon!
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Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Remicade,
Humira,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
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Flagyl 1000 mg
Entocort
Protonix
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
07-31-2012, 02:18 AM   #21
deb123
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Hi All,

AVW thanks for the tip about epsom salts i shall try and get some today.

I start Remicade in September, have to get a gynae surgery out of the way first. The registrar i saw gave me a script for Metronidazole, but after 7 days of them ive stopped as i keep getting episodes of being sick and feeling nauseous all day. The GI nurse said it was a common side effect and to get a different antibiotic from the Doctor.
To be honest the Metronidazole didnt help at all - still got all the bum cheek pain, leg pain, and hip pain. The registrar said the Surgeons looked at MRI scan pics and dont think surgery is appropriate yet and think its best to start with the Remicade.
I really dont think i've wished a Summer away in my life, i just feel like im in nomansland, and the longer i have these symptoms and sickness the longer the days drag.
On a positive note i've got a week Holiday from work, and i bought some probiotic capsules so i will give them a whirl.
07-31-2012, 03:55 AM   #22
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YAY FOR HOLIDAY!!! You definitely need it right now! I'm on medical leave from work now as well, seeing as how I can't sit at my desk and usually end up having accidents because my bathroom is more than two steps away. So anyhow, if you get bored while being laid up like I do, feel free to send me a message to chat! Cheers and enjoy the rest!
07-31-2012, 01:33 PM   #23
Mark63
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Hi Deb,

Sorry to hear things are still not going well. Some people don't get on with Metranidazole, so perhaps a change to Cipro will help? It not uncommon to have to take both at the same time to really blitz the bugs that tend to be at the heart of these problems. I always try to take pro-biotic yoghurt when on these antibiotics and that really seems to help keep the gut in good order.

Enjoy your time-off and I hope that you are feeling better soon.


Mark
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