3 year old with fistulising perianal Crohn's

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Mummy1974

Joined
Jun 14, 2016
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Hi all.
My 3 year old son had just been diagnosed with Crohn's. His endoscopy and biopsies were clear, thank goodness, but he has fistulizing perianal disease. Currently he has a fissure, skin tag, and 2 maybe 3 fistulas... one of which is getting bigger very quickly. He had a hypersensitivity reaction to Flagyl, which is a real kick in the teeth as it worked brilliantly.

We saw the surgeon yesterday, alongside our Gastroenterologist. They're going to do an MRI and then operate and place setons. He may need a stoma to let the area heal without the added worry of the fecal matter.

My question really is... has anyone else had their child start with isolated perianal disease? Has it progressed anywhere else in the gut and if so how long did it take? Did the setons cause problems etc. And if they had perianal surgery was a stoma formed at the same time?

Thanks in advance for any feedback, it's a really scary time and we're extremely worried about his future seeing as things are this bad at the beginning.
 
So sorry to hear about your little guy. It is hard to see little ones go through such a hard time. My heart goes out to you. My son's disease is mainly in the small intestine, but there will be others along soon I'm sure, who can give you some great advice.
 
VEO Ibd is different than early onset or regular Ibd
Kids dx before age 5 have a different set of rules
Kids before age 10 are a different phenotype as well .

Ibd in kids tends to spread over 10 years from dx
Especially little kids


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843045/

http://www.ncbi.nlm.nih.gov/m/pubmed/25058236/

http://www.naspghan.org/files/documents/pdfs/annual-meeting/2012/Muise - FINAL - NASPGHAN 2012.pdf

http://veoibd.org


There are groups to give kiddos ostomy dolls
Makes it easier
Or go get a teddy bear and do "surgery " while kiddo is in surgery
So the bear has an ostomy just like him
That helps too
 
I have no advice but just wanted to send hugs! Your poor little guy :ghug:.
 
Hi Mummy1974, my little girl Lucy was diagnosed with perianal disease at 2 - so in a very similar age group to your little man, my heart goes out to him. Lucy had a reaction to Flagyll also - she kept getting pins and needles in her arms and legs and it had to be discontinued, our GI tried Cipro also and she was able to tolerate that. We had a very long journey to get lucy into any kind of remission however it did come with biologics. Have you tried any other medications- Lucy was on 6MP and infliximab and finally humira and methotrexate before she got any relief. We did have the surgical consult where they recommended the surgery to disconnect the bowel to allow the area to heal, but we were told that this probably would not be a permanent fix and that she still may need to be on some level of medication, also our GI wanted to try all medical routes before surgery - we also tried every topical cream known to man but they didnt work. the placing of setons was never discussed with us so I am thinking that Lucy's perianal disease had a somewhat different presentation , she had very large visable open sores in her anal area that were deep. Having said all of that she achieve remission with Humira and Methotrexate at age 4 and only recently she has started to have some problems again, her calprotectin is raised but with only minor colitis showing from biopsies taken during colonoscopy. So in a nutshell the Crohn's is showing up in her colon but in a minor manner - we meet the GI again next month for a review of where she is at. Has your GI spoken to you about using biologics or do they feel they will have no effect currently. Hope all goes well with the surgery. BTW Lucy is now 8 so she had almost 4 years without symptoms.
 
Hi and welcome.
My dd was dx at 3 but not the type yours has.
It's been a long road but there's light in the horizon.

I hope your child's disease can be easily treated but if not this will be a great place for support.
Hang in there!
 
my little penguin said:
VEO Ibd is different than early onset or regular Ibd
Kids dx before age 5 have a different set of rules
Kids before age 10 are a different phenotype as well .

Ibd in kids tends to spread over 10 years from dx
Especially little kids


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843045/

http://www.ncbi.nlm.nih.gov/m/pubmed/25058236/

http://www.naspghan.org/files/documents/pdfs/annual-meeting/2012/Muise - FINAL - NASPGHAN 2012.pdf

http://veoibd.org


There are groups to give kiddos ostomy dolls
Makes it easier
Or go get a teddy bear and do "surgery " while kiddo is in surgery
So the bear has an ostomy just like him
That helps too
Click to expand...
Thanks for sending so much information through. We're extremely lucky with his clear biopsies but it looks like it could potentially be a rough road ahead. Good to be prepared just in case! We're going to have a very frank discussion with our Gastroenterologist at our next appt.
Your time is greatly appreciated.
 
polly13 said:
Hi Mummy1974, my little girl Lucy was diagnosed with perianal disease at 2 - so in a very similar age group to your little man, my heart goes out to him. Lucy had a reaction to Flagyll also - she kept getting pins and needles in her arms and legs and it had to be discontinued, our GI tried Cipro also and she was able to tolerate that. We had a very long journey to get lucy into any kind of remission however it did come with biologics. Have you tried any other medications- Lucy was on 6MP and infliximab and finally humira and methotrexate before she got any relief. We did have the surgical consult where they recommended the surgery to disconnect the bowel to allow the area to heal, but we were told that this probably would not be a permanent fix and that she still may need to be on some level of medication, also our GI wanted to try all medical routes before surgery - we also tried every topical cream known to man but they didnt work. the placing of setons was never discussed with us so I am thinking that Lucy's perianal disease had a somewhat different presentation , she had very large visable open sores in her anal area that were deep. Having said all of that she achieve remission with Humira and Methotrexate at age 4 and only recently she has started to have some problems again, her calprotectin is raised but with only minor colitis showing from biopsies taken during colonoscopy. So in a nutshell the Crohn's is showing up in her colon but in a minor manner - we meet the GI again next month for a review of where she is at. Has your GI spoken to you about using biologics or do they feel they will have no effect currently. Hope all goes well with the surgery. BTW Lucy is now 8 so she had almost 4 years without symptoms.
Click to expand...
Hi there, so sorry to hear about your little girl... it seems so unfair at such a young age. The paediatric pharmacist has actually agreed to try him back on flagyl but tablets instead of liquid just in case his horrific reaction was to the preservative in the liquid. Here's hoping! Our gastroenterologist has mentioned adding in a thiopurine after surgery but they want to get the setons in to keep the tracts open and draining instead of blocking and forming abscesses.
I know we're very lucky that his disease is isolated at the moment but, as I'm sure you're so aware, the location is hugely problematic. The pain he is in makes him petrified of pooping, he struggles to sit down, he doesn't even like peeing in case he farts or has a poop accident. If he develops phobias of pooping now then we're going to have an even harder journey on our hands!
I hope the signs of inflammation in your daughters colon stay manageable and don't escalate. 4 years remission is awesome, I hope it's a quick fix to get her back in.
Thanks for taking the time to respond, the support is greatly appreciated.
 
Farmwife said:
Hi and welcome.
My dd was dx at 3 but not the type yours has.
It's been a long road but there's light in the horizon.

I hope your child's disease can be easily treated but if not this will be a great place for support.
Hang in there!
Click to expand...
Thanks for your reply... 3 is so young when it's a lifetime ahead. Any support is gratefully accepted, I keep looking on here to see if anyone has a similar story.
I hope your little one is winning her battle.
 
Mummy1974 - yes the perianal area is so problematic and extremely difficult to treat making it almost torturous for the child - Lucy used to scream while she was going to the bathroom, it was soul destroying for her and me - the whole process used to take about 4 hours per day - 2 in the morning and two in the evening - the only saving grace was that her bowel was pretty regular so we could predict when she was going to poop, so at least we were able to be in the privacy of our own home - she really had no quality of life because she was in so much pain and then exhausted from the screaming and whole process she really was miserable. Sometimes (particularly with Flagyll) it used to get better and we would be lulled into a false sense of security but as soon as she stopped it or was on it for any prolongued period of time it lost its effectiveness and it was back to square one. My heart goes out to you and your little boy as we have been where you are and it is so difficult. I used to find sometimes if I read her a story while she was on the toilet or played I spy or something to distract her - it slightly helped and the two hours became 1.5 hours but it really is a very problematic pain for GIs to deal with. We also had a special wobbly cushion with a hole in the centre that helped with the post pooing pain. You probably know this already but we never used toilet role, it was always straight into the shower to wash the area rather than wipe post poop - found that helped a lot as wiping was also very sore for her. I used to use water wipes if she pooped when we were not at home again not quite as harsh as toilet paper. Did the epsom salt baths also - dont think they really did any good, but I felt I was doing something, because the level of helpnessess was unbearable as you well know. At one point we used a manuka honey dressing and a manuka honey cream but again I think I just felt I was doing something - I dont beleive this had any real effect, but going the process of applying it somewhat distracted from the pain for the while. I had also looked into using the hyperbaric chamber as studies have shown that it can be effective for treatment of perianal disease - but the humira had kicked in and started to work before we went down that road. Im not sure if this is something you would consider , it isnt covered by insurance here but isnt prohibitively expensive here either, I dont think that is the case in other countries, I remember reading something that it was really expensive in the US, but post surgery it might be something to consider. I really hope the surgery works for your little man - we will be thinking of you. Just wanted to add also when we were where you are I really thought this was it that there was no light at the end of the tunnell, but there was and she did get relief eventually and I think with Crohns and particularly perianal disease there is an element of trial and error as no two cases behave or present the same in really young children - so hang in there and work with your GI and the team as for us anyway there was light at the end of the tunnell, eventhough it didnt feel like it at the time.
Polly
 
My baby started with pancolitis (viral infection and eosinophils), symptoms went away after a few weeks only to come back stronger. After a year on pred, sulfasalazine and aza, the disease was mostly rectoanal and responded well to mesalazine supps and topical steroid cream. She still got fissures often but the topical treatment was the only thing that worked. Flagyl didn't work for her and made her vomit a lot so we stopped. Enemas combined with supps work well too, her gi likes to combine budesonide with a 5 asa before bed and I have seen results when the disease is confined to the lower part.
Hoping surgery will work for your little one.
 
polly13 said:
Mummy1974 - yes the perianal area is so problematic and extremely difficult to treat making it almost torturous for the child - Lucy used to scream while she was going to the bathroom, it was soul destroying for her and me - the whole process used to take about 4 hours per day - 2 in the morning and two in the evening - the only saving grace was that her bowel was pretty regular so we could predict when she was going to poop, so at least we were able to be in the privacy of our own home - she really had no quality of life because she was in so much pain and then exhausted from the screaming and whole process she really was miserable. Sometimes (particularly with Flagyll) it used to get better and we would be lulled into a false sense of security but as soon as she stopped it or was on it for any prolongued period of time it lost its effectiveness and it was back to square one. My heart goes out to you and your little boy as we have been where you are and it is so difficult. I used to find sometimes if I read her a story while she was on the toilet or played I spy or something to distract her - it slightly helped and the two hours became 1.5 hours but it really is a very problematic pain for GIs to deal with. We also had a special wobbly cushion with a hole in the centre that helped with the post pooing pain. You probably know this already but we never used toilet role, it was always straight into the shower to wash the area rather than wipe post poop - found that helped a lot as wiping was also very sore for her. I used to use water wipes if she pooped when we were not at home again not quite as harsh as toilet paper. Did the epsom salt baths also - dont think they really did any good, but I felt I was doing something, because the level of helpnessess was unbearable as you well know. At one point we used a manuka honey dressing and a manuka honey cream but again I think I just felt I was doing something - I dont beleive this had any real effect, but going the process of applying it somewhat distracted from the pain for the while. I had also looked into using the hyperbaric chamber as studies have shown that it can be effective for treatment of perianal disease - but the humira had kicked in and started to work before we went down that road. Im not sure if this is something you would consider , it isnt covered by insurance here but isnt prohibitively expensive here either, I dont think that is the case in other countries, I remember reading something that it was really expensive in the US, but post surgery it might be something to consider. I really hope the surgery works for your little man - we will be thinking of you. Just wanted to add also when we were where you are I really thought this was it that there was no light at the end of the tunnell, but there was and she did get relief eventually and I think with Crohns and particularly perianal disease there is an element of trial and error as no two cases behave or present the same in really young children - so hang in there and work with your GI and the team as for us anyway there was light at the end of the tunnell, eventhough it didnt feel like it at the time.
Polly
Click to expand...
This sounds awful, and it's really not meant to, but it's comforting to know that someone else knows what we go through with our little man. Sorry, that makes me feel really mean as I wouldn't wish it upon my worst enemy... but it makes me feel less alone. It sounds like you had a truly awful time. It does feel like this is how it's always going to be, so thank you so much for your encouraging words. We just have to stick at it and have faith that his team will find a fix.The Flagyl does help with the pain and is such a relief after having him screaming and sobbing every time he was having a poop. Thankfully the tablets, as opposed to the liquid, haven't caused a reaction yet. We bought him his own little sitz bath which he loves, and the Proctosedyl ointment works to a point. After he's had a poop he'll be happily sitting down or playing and will suddenly start screaming in pain again. Hard to tell if it's the fissures or fistulas but he often has a mucousy discharge with it.
I get so down when I think of the surgery. In a strange way it was being told he'd need surgery that suddenly made it all seem so real and it started really sinking in. The thought of him having to have such an intervention at the very beginning of his treatment is really hard to handle. Hopefully we'll get him in remission and he can get back to being my awesome little bundle of energy... I haven't seen him like that for so long it's easy to forget what he used to be like. And that makes me feel even more devastated, that this is his new normal. The pain, exhaustion, everything.

Sorry, sometimes it all comes crashing around me. I'll have to learn to dust myself off and smile. Thanks for your help, and for listening.
 
Hello,
I have been lurking around this board for months and saw this post and decided to finally set up an account. My son was diagnosed with Crohns late in 2015 at the age of 11. Similar to your description, his only symptom was a perianal fistula. I feel somewhat lucky that we were able to come to a diagnosis so quickly (a few months) and start getting him some help.
The first fistula was treated before we knew he had Crohns and the local hospital and support teams did a pretty poor job (in hindsight). We now go to a different hospital that deals with Crohns regularly. In the last month a second fistula has formed and they placed a seton. Not fun for a boy starting grade seven but he has been very good with taking care of it and trying to not let it bother him. We too are ready to start Humira (as others have mentioned). Right now we are just waiting for the fistula to drain a bit and make sure it does not get infected. Fingers crossed that the Humira works. And I hope that your son gets the treatment and relief that he needs.
 
Hi, my son was diagnosed at age 6 only with perianal crohns, skin tag, fissure, abscesses and one fistula. Only syntoms. He was put right away on prednisone and soon after 6mp and asacol. ,until he was off the prednisone. During he 3 yrs that he took 6mp he still had abscesses, so they gave us Flagyl.. The. Years later we used Flagyl and cipro 6 months each. He was taken off 6mp but stayed in Flagyl and cipro only for some time. 2 yrs ago he started bleeding due to fissures. Long story short. After exactly 10 yrs of being diagnosed, he develop C diff. Due to the antibiotics. Wich they worked good for him. Always. The 10 yrs was March of this year, when he got the Cdiff lost 12 pounds, and started having issues with the bathroom (never before) he was on treatment for Cdiff. He was the. Perfect but due to all colon swollen he was still running to he bathroom and had the urge. Last MRI in July said he has left side,sigmoid and rectum still with inflamation. The urge to he bathroom was bad, stool, sometimes was mushy, solid or watery and it is like than since. He started with Remicade Aug 22. He had already 2 infusions, he gained 2 pounds , his energy is better. (He was in iron infusions all summer long due to anemia all cause by Cdiff with crohns) so far he is still the same running to he bathroom and bleeding. Going for 3rd infusion oct 10. I don't know if Remicade is working or what. But his only problem was the perianal crohns. . Good luck with your little one.. We avoid Remicade for 10 yrs. but now at age 17 he took it try everything you can before jumping to a biological.. Sit baths work good for my son..
Michael go age 6 now 17 only Remicade, Pentasa and probiotic
 
Just thought I'd give an update. Apologies to people who have posted and I haven't responded to, it's been a pretty rough few months.
The Flagyl and Ciprofloxacin didn't work a jot and my little man ended up being admitted to hospital for a week of IV drugs. He'd lost weight, had deep mouth ulcers, oro-facial stomatitis and abdo pain. They also started him on 8 weeks of exclusive enteral nutrition. While we were in he had an MRI scan to check out his fistulas.
The MRI showed thickening in the recto-sigmoid colon (it was clear on endoscopy in August). He was started on Azathioprine. He immediately started to get fatigued and after 5 days developed joint swelling and rash (erythema nodosum). His liver and kidney function were very affected so they stopped it and he carried on with just EEN.
He had his 4th birthday on EEN with a frozen Fortini train cake!
Anyway, that all took us to half way through EEN and they agreed to leave him alone with no new drugs so he could benefit from the nutrition. But, over the last 4 weeks he's been getting more exhausted and pale as time went on. We had bloods done yesterday and his liver enzymes are extremely elevated. It's his last day of EEN today and we don't feel he's been able to benefit from it because of all the other stuff going on.
I'm waiting to hear back from the hospital as to what happens next. They were going time start him on 6MP but may hold off because of his liver. We have no idea what's going on and are very disheartened that our 4 year old has been such a legend for the last 8 weeks and he's still sick.
Anyone know of any other kids out there with liver problems and Crohn's? Anyone has liver problems caused by EEN?
 
Have they not considered something like Humira or Remicade? They are easier on the liver than 6MP and Azathioprine. Plus Azathioprine and 6MP are "sister drugs" - often if one causes a problem, the other will too. It's not always the case - there are kids who respond badly to Aza and well to 6MP, but I'd ask about other options.

I would also get him on a drug ASAP since he's not doing well. The sooner he starts, the sooner he will feel better. There are some parents who have little ones close to your son's age on biologics - I will tag some of them: Pilgrim, Farmwife, my little penguin.

Very impressive on the EEN - he's a tough kid!
 
They'll have to figure something out! All drugs are government funded here so they have to work through the tier system before they go for the big hitters. But, as you say, they have to put him on something as he's a poorly boy.
To be honest I think the EEN worked well for his Crohn's and that this is a different issue starting up. I'm really wondering if this is a reaction to the EEN.
 
Een does not cause liver issues
Crohns and liver issues go hand in hand
There is autoimmune hepatitis
Which more than a few little kids had here with their Crohns
I understand tiers but he failed the ads class of drugs with included 6-mp
Ds has similar issues with 6-mp
Can you ask about methotrexate since they will not permit biologics till you fail everything ?
Ds has been ok with mtx combined with biologics but mtx by itself was not enough ...
No liver issues with mtx so far

You may want to keep een as a supplemental formula to whatever drug your doing
Since that can help with nutrition and growth
Ds was in een at dx at age 7
He is now 13 and still drinks a few a day plus food
His weight and height are similar to other kids his age due to this
It asks help when he flares since we just go back to een for a few weeks instead .


Have they tried steroids ?
If it's autoimmune hepatitis I believe steroids can help calm it down
Een won't touch that one
http://www.childliverdisease.org/In...ormation-on-liver-diseases/Autoimmune-Disease

There is also Psc which also happens with Crohns a lot in kids and
Oddly the treatment is 6-mp or aza

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3435769/

http://emedicine.medscape.com/article/931355-overview

http://www.childrenspsc.org

Wish you the best of luck
 
Your poor little guy! May I ask what country you live in? It's so frustrating that you cannot move on to say, remicade. I feel like that may be where you are heading if EEN has failed and he cannot tolerate Aza (my son couldn't take it either). But, it is a blessing that meds are full funded! Perhaps they could give steroids and methotrexate a go, as my little penguin said. I hope a solution is found soon and your little guy can start feeling better.
 
We live in New Zealand and the health care system is really good... thank goodness!
He'll be staying on maintenance EN for the foreseeable future so hopefully that will keep him in remission (if he's in remission!) and maintain his weight. With all that's been going on the weight gain has been minimal, at the 6 week mark he had put on 0.5kg, and that was just getting him back to the weight he was when first diagnosed 6 months ago.
I will talk to them about methotrexate, thanks. I'm guessing they'll put him on steroids even just to get things under control. It's such an awful thought that he's got something else to battle now as well as the Crohn's. They're a bit bemused by him at the moment given his reactions to things, but I know that being diagnosed so young can mean it's a pretty aggressive disease course, and can take a while to find what works.
Thanks for your help and feedback, really appreciated. It's such a lonely journey.
 
Maintenance EN might help with remission but almost always a maintenance med is needed, especially with aggressive, fistulizing Crohn's :(.

Methotrexate is a good idea - hopefully he will tolerate it better than Azathioprine. It can also be hard on the liver, but often people who cannot tolerate 6MP/Aza do well on MTX.
 
Also since he is so very young
Make sure they do genetic testing
Very early onset Crohns (under age 6)
Can be due to immunodeficiency issues
Not sure who would do the genetics there
Once food is introduced then it becomes supplementary en which is not the same as steroids and will let inflammation come back
We still do supplemental for ds so growth and weight are not affected as much
Weight gain starts for ds once he is on the combo of food and formula
Formula only maintains weight ;) and barely at that
 
Awesome advice. We're seeing our GI next week so will go with a list of questions! He's picked up HUGELY since he started eating... he's got colour, energy and nothing like the level of fatigue. That doesn't explain the liver problems, but it's best to see him looking better instead of grey.
Any specific immune deficiencies that I should be asking about?
 
Hi Mummy1974, you have really been through the mill since you last posted. My heart goes out to your little man, while different to lucy there are some similarities, particularly in relation to the mouth, I always knew if her mouth was bad her bum was going to follow very quickly - for Lucy Humira and methotrexate was the answer but also like you we tried the anitibiotics and 6mp first and then remicade and finally humira and methotrexate. My GI was telling me at our last meeting that new evidence is suggesting that methotrexate in kids doesn't have the same effect on the liver as it does in adults so that might be a better option than the 6mp as I think in lots of children this does affect liver function. It is very difficult to know which drug combination will work as you can probably see from being on here just because something works for one child is in no way indicative if it will work for another. Big hugs to you and your little man - did he have his surgery - maybe I just missed it in your update?
Polly
 
Well, Christmas has been and gone and we're no further forward... my boy is still not well and has been having a really tough time . He's getting pain in new places, is frequently having accidents as he can't get to the toilet on time, his fistula output has increased, his face is a mess, he's leaking pink mucous, zero energy, zero appetite,, lost weight.... the list guess on. His new symptoms are indicative of active disease in his colon, the drugs are just not working. We're seeing his Consultant on Thursday to start the work up for biologics. I can't believe we've progressed to this so quickly, he was only diagnosed in September!
He had loads of tests before Christmas for various disorders and some came back as being indicative of a deeper problem going on... will find out more on Thursday.
Scary stuff.
I hope you're all well and that your children are winning their battles!
 

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