Neutropenic Sepsis - Thankyou 6-MP

[mollyminer]

6-MP Mercapapurine

A slightly unsuccessful choice of medicine for me. Please feel free to read my story and comment, sorry its long. Any success stories on fistula treatment would be great, its got me a bit down. Thank you - Michael

05th October 2011 following flare up over summer.
Started 6-MP

20th October 2011
Blood Test

02nd November 2011
Dr's appointment. Explain to doctor that I have flu like symptoms, been dosing up on parecetomol and lemsips etc. In addition I have some rather large ulcers. Dr reviews blood test results and everything is looking good. We both agree I should take these pills long term with regular blood tests.

06th November 2011
Nasty pain in my back side, I figured it's piles and carry on as usual, whack on the creams etc.

09th November 2011
My 30th birthday and my beautiful girlfriend wakes me up at 6am with two tickets to Rome! I'm delighted but flu appears to be worse. Hot air should do me good and off we go. (Beautiful city by the way).

10th November 2011
My back side is starting to hurt more. In addition I have a bruise on my ring finger on my left hand. It really hurts but I don't recall banging it or catching it. Very puzzled off we set for a tour of the collesium.

11th November 2011
Starting to limp, pain is getting worse. Never experienced piles like this. Had three showers in the day and night which helped. But my finger, wow, it has swollen and looked like it had pus under the nail. It hurt so much my head was throbbing and I begin to sweat. No evening meal and drinks for our last night in Rome. I feel so guilty and depressed that my partner had taken me here and I'm this ill. Who has flu for three weeks!!!??? She places a wet towel on my head and I ache myself to sleep.

12th November 2011
I'm in agony. It's the finger causing more pain than the backside. I find a badge (from my 30th birthday cards) and I take the pin from it and stab my finger. The relief was incredible. The pain not completely gone but still better than it was. I milk the thong and there's an awful lot of white/yellow stuff. We have breakfast and get ready for our flight home. As soon as we land we go to A&E and I'm given antibiotics for Paranicia (gypsies kiss). My back side still hurts but i don't want to talk about that too since I'm convinced its piles. The ulcers have spread to my tongue.

14th November 2011
Back in A&E on NHS Directs advise since flu symptoms have still not gone and back side has got worse. Junior Doctor and her trainer (senior doctor) inspect my back side. I talk him through everything. He tells me I need to go back to london and see my GP and get a blood test. He also tells me I should be very concerned (caring..). I go back to my partners (lives miles away from London and I'm staying at hers since my birthday). She has a wet towel on my head again. I also have what's called a perianal fistula. Great, so not piles.. why did the hospital not admit me then..

15th November 2011
Partner is getting very concerned. Skin is starting to go a yellow colour. My arse has never felt so much pain, I've broken bones that dont hurt this much. Phones a doctor in the evening and they agree to see me at 10:10 the following day.

16th November 2011
Doctor examines me. Actually listens to everything I'm saying. Wedmore I believe the village was in somerset (Dr Jackson I think he was - should be commended). Shows his concern and gets straight on to A&E. Bags packed and off we went.

16th-24th November 2011.
Underwent a blood transplant, 4 units in total (scared the life out of

me). Multiple drips and syringes sticking out my arms. Antibiotics by the bag load. Anti fungal mouth wash to cure the Ulcers, lost appetite, unable to eat with ulcers. Day three operation under general anesthetic to drain abscess on the anus - shows the perianal fistula tract and seton put in place. I cried three times in hospital, twive from pain which not even morphine helped to relieve and once through fear. I've never felt so scared in all my life. I've joked to my mate in the past saying i will be dead before I'm 40, yet im lucky to only just break 30.. two other people died on the same ward as me, makes me realise how precious life actually is.

Diagnosis - Neutropenic Sepsis
Cause - 6MP Mercaptapurine

Are there any successful stories of fistula healing after a seton has been removed without having to have another operation. I hate this rubber band. its knocking my confidence.

 

[DustyKat]

Hi Michael and :welcome:

I'm so sorry you had you go through all that! That's awful! I wonder though if your doc could have avoided you ending up with Neutropenic Sepsis by monitoring your bloods more closely. Normally you would have bloods done weekly for a few weeks when starting 6MP. Did you have a TPMT blood test before you were prescribed it?

Sorry, can't help with the seton question but I'm sure others will be along that can.

Dusty. xxx

 

[mollyminer]

Thank you Dusty

I've basically been trying to find a drug that's good for me that workable with me. Tried aza a month before this one and had to stop it early on due to it maling me sick. Was on steroids before that to treat the flare up. Prior to that i had only have 3 flare ups. The first in 2009 I was given pentasa. I took those pills for about a year but I had a flare up whilst I was on them. I never went back to the doctor then although looking back on it i wish I had so I never had to try all these pills now. The good news is despite all the stress I've not had a flare up since before summer. I used to smoke and I quot before summer so I really hope that will help clear that up. The doctor is giving me a break from the drugs until the new year. Blood tests were being done every two weeks. I think you are right, probably should have been done more regularly. What's a TPMT? Presume he would have done that.

Michael

 

[JohnnyRottenAppleseed]

Do you think the 6mp caused the fistula? I had less severe negative reactions from 6mp and quit a month ago. Mainly I had a lot of abscesses from the 6mp.

 

[mollyminer]

Hi Johnny.

I figured since I had a colonoscopy back in July that maybe something such as a fistula would have been spotted then, i also had so many docs looking at my backside that I presume it would be hard to miss? I had never heard of them until this episode. I remember the first pain that I thought was piles may well have been a small tear. I suppose its possible that whilst my immune system was shot to pieces that the tear (fissure) didn't heal quickly causing in abscess which then caused a fistula. I think the surgeons were trying to come to some conclusion along those lines so in some respect it may well be down to the pills.

Abscess pain was so unbearable.

Michael

 

[tiloah]

I am so sorry you have had to deal with all of this. I hope you find an effective treatment and are able to put your mind at ease and feel better.

Welcome to the forum.

 

[DustyKat]

Hey Michael,

TPMT is a blood test that measures the level of an enzyme you have in your liver that helps metabolise drugs like 6MP/Azathioprine. If you have normal levels of the enzyme you are less likely to suffer with the more serious side effects these drugs can produce. It is a test that normally takes at least two weeks to receive a result for but is very often longer than that.

Dusty. xxx

 

[JohnnyRottenAppleseed]

Michael, the 6mp definitely suppressed my immune systems ability to fight off the abscesses and fistula. My Fistulas went away for 6 months after I cut my dowse from 100mg a day to 50mg and finally cut it out completely a month ago. Say, I think they may be acting up again but they don't get infected a unite just fill up with blood and drain where before they used to abscess. I'm hoping they don't come back. I had an MRI that showed no fistula but my GI doc thinks that's what it is but he kind of sucks and just pushes harder drugs with greater side effects. I haven't flared in over a year knock in wood.

 

[beth]

The TMPT test is not usually done in the UK, the docs seem to prefer just giving a script and trying it. Blood tests should have been done weekly, even if, and especially since you had just failed azathioprine.

The seton is important, simple, but without it the abscess and fistula will not heal from the inside out and will re-occur.

 

[mollyminer]

Thanks for all your comments and kind words.

So it's the NHS that choose not to do that TMPT test then, guessing its a cost thing. Wonder if they would have done that if I had gone with a Private Doctor.

It was a shock to wake up from surgery with a rubber band in my back side. I understand what the Seton does now having spoken properly to the Gastro team this week for the first time without being heavily dosed with pain killers. It's not the most comfortable thing to live with.

My concerns have mainly been where I have read up on Fistulas on numerous sites. I don't think I came across any success stories and this is what frightened me slightly. I was concerned I would get lumped with it long term. I then read horror stories where people have had to take bags of toilet tools everywhere they go. Poor Souls.

Appreciate all the comments on the drugs situation - I'll keep you posted on the next lot they put me on. I don't mind trying different things provided it doesn't try and take my life again. :thumright:

 

[DustyKat]

I don't know how your system works there but if you can't tolerate the immunosuppressives (6MP/AZA) then you should step up to the biologics (Remicade/Humira), one is an infusion the other an injection. Research does indicate that they are very effective in healing perianal Crohn's and fistula's. Have the docs mentioned these to you at all?

Dusty. xxx

 

[beth]

Haha! I was seeing my GI privately when he put me on aza and then 6mp. IIRC he said most people are fine with it but it's a very expensive test. I guess you were just unlucky! I had a reaction to aza after about 3 weeks and then tried 6mp. It was spectacular: I threw up 5 hours after taking the first dose and didn't stop throwing until I got an injection of anti-emetics. Those were the days!

I now see the same GI within the NHS system so I can have Humira.

I have a success story with setons! After about 6months my surgeon thought it worth trying to fill the remains of the tract with Fibrin glue. Now problems since! (crosses fingers, touches wood, hopes all the $deity's are looking out). Unfortunately there aren't many other options than more radical surgery, like opening the tract, or bypassing the whole area with an 'ostomy to allow it to rest.

 

[J_Matrix]

Before I was put on Aza I had the TMPT test, the way my Consultant spoke it seemed like regular practice.

Anyway it came back as low so I am only able to take 50mg of Aza, this worked wonders for a while but after about a year the effects of the drug soon wore off and my Crohn's became active again.

I was scoped to see how badly it had come back and my Consultant advised that I tried Infliximab and that funding should be approved easily because of the fact that my low TMPT count made it difficult to prescribe anything else.

Anyway I have had my 3rd infusion and feel great, although I can tell I am in need on my next one - due next week

 

[beth]

Cool, I haven't heard of many people here getting the TMPT. At least some places are.

 

[tiloah]

Haha! I was seeing my GI privately when he put me on aza and then 6mp. IIRC he said most people are fine with it but it's a very expensive test. I guess you were just unlucky! I had a reaction to aza after about 3 weeks and then tried 6mp. It was spectacular: I threw up 5 hours after taking the first dose and didn't stop throwing until I got an injection of anti-emetics. Those were the days!

I now see the same GI within the NHS system so I can have Humira.

I have a success story with setons! After about 6months my surgeon thought it worth trying to fill the remains of the tract with Fibrin glue. Now problems since! (crosses fingers, touches wood, hopes all the $deity's are looking out). Unfortunately there aren't many other options than more radical surgery, like opening the tract, or bypassing the whole area with an 'ostomy to allow it to rest.

Holy what!? That's AWFUL! 90% of people can metabolize the drug, but the 10% who can't could be poisoned! That is just plain neglectful!

I produce the enzyme, but below threshold levels, so I was told I couldn't take Imuran.