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Ams-Qld

Ams-Qld

Joined
Sep 3, 2012
Messages
104
Hi everyone. I haven't been on for ages. Head in the sand really! Have had a horrendous two weeks and am now waiting to hear back from the surgeon.
About three weeks ago our son started saying his butt hurt again. (He has had a perianal abscess for almost 6 months - 5 months on flagyl so far.) We had a look and it is definately flaring which happens from time to time until a larger than usual drain occurs. So we started back on salt baths and waited for it to calm down as it has previously. Unfortunately that was not the case and he developed two fistulas in three days!
We went straight to the GI who brought in a surgeon to take a look. They discussed setons, an MRI and Humira. At this point I was definately struggling and just needed to keep him out of hospital to attend the funeral of a close friend the next day, and get my two older children off to their first day back at school. (It has truly been a difficult few weeks!)
I have been doing a heap of research since and have been watching the posts here but not been up to writing till now. Last night after another sleepless night for our son feeling sick and in pain, we discovered a third fistula and very little is draining if any. Called the Dr, waiting to hear the outcome. I am thinking that we try a few things before we resort to Humira. I am going to ask for a EUA while they place setons. A few weeks in hospital on EEN and IV flagyl/cipro/pred, and back on Imuran at a higher dose. What do you guys think? Anything I haven't thought of?? Am really hurting for my boy but God is upholding me atm. Blessings, Ams.
 
Hugs..
It's a hard decision
But whatever gets him into remission is my motto.
In our case 6-mp wasn't enough
Sounds like its not enough for your son either .
 
((Hugs)) my guess would be if Imuran is at theraputic levels then it is just not enough, I'm sorry you are having to make these tough decisions when we just want them well.
 
Aw, I'm so sorry to hear about your son. If my little girl puts me through sleepless nights and hairloss, I can't imagine how your head is spinning. I'm glad to hear that your faith is in God! He is the faithful anchor we can all hold on to in the storms!

Hugs, Carol
 
It does sound like it's been a very difficult time. My heart aches for you and your 10 year old son. Mine was 10 at diagnosis.My condolences on the loss of a close friend. I imagine you would just like to stop time for a bit so you can take a few breaths and get your feet under you, so to speak. I'm sorry you're not able to take that time right now.

I am gently joining my voice to MLP and JM - I think you are asking for much bigger trouble if you don't go to a biologic now.

The plan you have proposed sounds like doing the same thing you've already been doing for 6 months but adding EEN.

A very new study found no benefit from EEN for children with perianal disease.

http://www.ncbi.nlm.nih.gov/pubmed/23016828

If Imuran was going to work I think it would have done so by now. Same with the flagyl and the combo of the two.

In case you haven't seen this yet, here is a free full text article published in 2011 that covers the diagnosis and treatment of perianal crohn's. You may find it helpful. The very last 2 or 3 paragraphs discusses using fibrin glue to close fistulas as well as some other experimental but promising treatments.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3082746/

If the docs are recommending a biologic then I think you should carefully consider that option. You don't need me to tell you that severe perianal Crohn's is often very difficult to get under control. In 6 months things have gone from 1 abscess to abscess plus 3 fistulas.

Combining a biologic with surgical treatment like Setons appears to have the most research evidence and clinical support based on the research I looked over just now. It is also the treatment that I have heard described by other families whose children have fistulas and abscesses.

The only other options are know of would be a temporary diversion to try to get things healed up, probably combined with a biologic at the minimum but I've only ever heard of one other child who ended up with that situation.

The article I linked above referred to this but here's a reference to an approach I hadn't heard about until I found it just now. It's doing direct injection of the biologic (has been done with both remicade and humira) to the area of the fistulas. The studies I looked at had small numbers - less than 20 people, and they were on adults. But the results were very, very good - better than when those meds were given systemically.

http://www.ncbi.nlm.nih.gov/pubmed/22810472

I doubt your doctors would be willing to try this approach but you could ask or ask about having the medication compounded into an ointment to be applied topically.

All the best
 
Hi, sorry to hear things have gotten so bad. I can understand you not wanting to try Humira, but I would think it may be a good idea. The imuran didn't seem to work the first time and as far as I've read, EN isn't any good for helping with fistulas, just for healing the lining of intestines/stomach (ulcers) and for nutrition.
Did the GI not mention Remicade? It's just that our GI said when dealing with fistulas/peri-anal disease, we try Aza or 6mp first, then if things still got bad, the next step would be Remicade. Probably the difference in licensing laws though (Humira was never even mentioned), like poor Andrew having to fail Aza first before allowing him 6mp even though his test showed he was borderline to tolerate it.
Good luck with your decision, I hope that whatever happens it heals the fistulas!
 
Hi everyone; thanks for the encouragement and support. I appreciate it, it has been such a hard new year. My friend who passed was 28, two small children. It was a car accident, her husband is still in the ICU in an induced coma. I am still grieving her loss.
Our ds had a good night sleep PTL. He is booked in for surgery for a drainage, EUA and seton placement on Monday. But it is his 13th birthday on Tuesday so we are hoping we can hold off till Wednesday. Am hoping for IV flagyl and cipro and perhaps some steroids, (the flagyl seems to help the most). The reason for the Imuran is that he has been off it for about three months and so we wonder if it can help again at a higher dose. (He went off as he had been on for two years and was not immunised for chicken pox, so with the Dr we wanted to phase him off for awhile and get his immunisations up to date.) He has never had his therepeutic levels checked so I don't even know if he was at the right level. The Dr was just going by weight, and checking that his body was coping with it, which it was. It is a little frustrating that I have to be the one to ask for every test though. I think we are willing to do Humira, but we want to try every other avenue first. Especially since he seems to be in remission in his bowel, it is just these darn perianal issues, which were not there at diagnosis. He is growing, gaining weight, no pain, no frequency probs, good labs etc. His Dr wants to try Humira as he thinks Remicade may cause allergy issues for him and doesn't want to try and then have it fail and start over. Though I have heard from adults that the needles for Humira are very, very painful and I don't know how our ds will deal with that. My main concern is keeping him in a good place emotionally as we go through this difficult time. Thanks for the info and support, you are all such an encouragement to me! Blessings to you all. Ams xo
 
No real advice, but I wanted to wish you and your son the best of luck. I hope the EUA gives some more solid answers as to what is going on.
I will put my two cents in and say that I agree with the others that it is most likely time for Humira.
I also send my condolences on the loss of your friend. How very sad :(

Happy early 13th birthday ! Watch out momma, it's teenage time! LOL
:hug:
 
Totally understand - Andrew is the same, no urgency, normal stools, no blood - just the horrible fistula! Very frustrating. Hope his surgery goes well and hope he has a really happy birthday!!!
 
Thanks everyone! Thanks for the link Catherine. The GI thinks Humira qualification is not a prob but I hadn't read anything like that before. MRI is tomorrow, but we got through to today, his birthday, without being in hospital!! We went to a theme park on Saturday for an early bday (just in case) and all the walking and rides did wonders for his abscesses!! He was exhausted by the end of the day but had a heap of drainage which relieves the pain and takes away the need for emergency surgical drainage. I am very grateful.
Now we have MRI in the morning and then Ped Surgeon on Thurday to decide dates for surgery. I am hoping it is this week because I want the EUA and setons done before anymore fistulas pop up!!
I am so thankful to have this forum and be able to share with people who I know understand in a way that others simply can't. :hug::hug:
 
I get the feeling in Australia if they qualify for this meds they really need them.

My daughter is currently doing third of pred to tick box to qualify for remicade.
 
What a novel way to drain abscesses :ybiggrin:. Andrew loves theme parks - must keep that in mind in case I ever need to do that! ;)
 
HAPPY 13TH BIRTHDAY TO YOUR BOY .....:bdayparty:.....I hope he had a great day.

Good luck with the MRI tomorrow and the surgeon on Thursday
 
Thanks everyone! He had a great day yesterday, though last night was not great. He was up for a few hours feeling very sick and a bit sore and needing to go to the bathroom. He thinks it was the fresh cream on his cake (his request) and the milk he drank. I am starting to think we need to go lactose free as well. Anyone else had that? Anyway, he got back to sleep at about 2:30am, we woke up at 7:30 and even though the hospital didn't tell us he had to fast he has chosen to. He says he doesn't want to risk the MRI, he just wants to get in to hospital and get some treatment! Even though it is hard to know he has accepted the surgery because he is in pain and over it; it helps that we don't have to be 'pushing' him all the way to hospital!!
Blessings, xx
 
Fwiw DS had to fast for his MRI .
Easier to drink all the extra liquid on an empty tummy.
Hope it goes well.
 
Hope all goes well. We did lactose free with Amy for a month. It didn't seem too bad as there are alot more options in the supermarket than there used to be. Might be worth trying, you could get help from the paediatric dietician.
 
Great news, no surgery this week!!! Our DS is so relieved! The MRI results show only one fistula (yay!) with four openings (boo!), but it is low grade (yay!) which is good news for future healing.
However, because there are four channels from the one fistula the surgeon is concerned that any surgery, even seton placement, may open them up to reveal one large gaping wound that would be very difficult to heal. Thus he will only do surgery if the openings refuse to drain over time. We are very happy with his conservative aproach. His suggestion for meds were to add cipro and Entocort, and then perhaps aza if needed; but he said we need the GI to sign off on that. So, back to waiting till next Thursday for further surgery assessment and GI appointment for extra meds, continuing salt baths and heaps of showers and calmoseptine!! All in all though a very happy day for me!! Thanks for all your support guys. :hug:
 
Yea! Great news! Praying for complete healing and resolution of the fistula, no more pain and no surgery! And quickly!
 
Good news! Hope they heal up soon. If they do add aza hope it works as well as it has for my husband, he has not had a fistulae since starting on aza and had several prior to that.
 

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