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Please help - 4 yr old has fissures

My four your old son has been in so much pain these past few weeks. He never had any health issues until a month ago when I noticed blood in his stool. I took him to his pediatrician who confirmed he had several fissures. I was in shock since he never complained of pain and went to the bathroom regularly. Two weeks later an abscess appeared and turned all of this into a nightmare. He started to be in so much pain using the bathroom that he is now holding it in. He also started to have inflammation in his mouth. His gums are raw but he has no ulcers. I was referred to a GI doctor but ended up having him hospitalized twice for pain and the size of the abscess. He had to be sedated for an MRI that confirmed a fistula. I've been told by two different GI doctor's that they strongly feel like he has Crohn's disease. He is in the process of being scheduled to have scoping done.

My biggest issue is getting my son to go to the bathroom. He is refusing. I totally understand but don't know what to do to get him to go. The GI doctor prescribed a hydrocortisone 2.5% cream. We were doing four sitz baths a day and are down to two. I've even placed a wet rag and a hot pad on his bottom to increase blood flow. How in the world will these fissures heal???? Can you please share what has worked for you? Any advice will be helpful. I'm so scared and don't know how to help my son. Having him go through scoping with these fissures is making me even more nervous. Thank you in advance.
 
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I'm so sorry for what your son is suffering. My experience is that keeping the stool very soft, with regular doses of Restoralax is helpful.

We have dealt with fissures but not an abscess or fistula.

It is so tough with a 4 year old. I would also ask about a liquid formula diet while you are waiting for diagnostic scopes. We did this with my daughter at age 4. 100% calorie intake from Ensure or Boost shakes for 6 weeks helped calm inflammation and decrease blood. It is safe, but you would need help from a nutritionist to work out the right number of shakes, etc...

So sad you have to deal with this.
 

my little penguin

Moderator
Staff member
Unfortunately you can’t do formula only (pediasure or kids boost ) until after the scopes .
Since formula only will completely heal the gut making it harder to determine the cause and get an accurate diagnosis
How long till they do the scope ?
In the US the can direct admit to the hospital and do the scope the next day ..
Can you ask the Gi for this since he is in so much pain ?
Otherwise the scope wait can be 6/8 weeks for “outpatient “
Miralax daily can help soften the stool the gi
should give you the dose
Since he is under the age of 8
Very early onset (veo ) ibd would be the case if he has crohns
There are a few pediatric hospitals in the US specialized in VEO ibd kids since they are difficult to treat and present differently and sometimes have extra “stuff” going on .
Children’s hospital of Philadelphia has a veo ibd clinic

Can you have him “sit “ on the toilet to read /watch tv etc.. without trying to “go” to get him to relax some?
Ds has had fissures but not an abscess or fistula
He was dx at age 7 and now is 16
Hugs
 
I greatly appreciate your feedback!!! Since writing the post my son went to the bathroom and said the pain was a little better. The hydrocortisone cream appears to have worked. I just didn't know since he hadn't gone since the doctor prescribed it to me earlier this week. I honestly felt like the gates of heaven opened when he said it was better. We had to use a suppository since he held it in for so long a week ago, so that was such a BIG win!!! I will take a little better!!!!

To answer your question - singing songs, buying him new toys, watching tv, etc. made no difference in him going. The term poop alone had him terrified. At one point, he was begging me not to let him go. He said he felt like someone was cutting him. It's honestly been so sad to see and hear.

Since my son's dentist confirmed the inflammation and rawness in his mouth appeared to be coming from something internally, the GI moved the scope along. Last we spoke she was getting everyone together including an oral surgeon to take a biopsy since they can obtain details from his condition from his mouth under a microscope. I strongly believe it will be done within the next two weeks.

By the grace of God we live in the Philadelphia area. There are two children hospital's in our area - Nemours and CHOP. We had been referred to a GI at Nemours by our pediatrician, but we took him to CHOP when he was hospitalized and that allowed us to quickly be seen by one of their doctors. I can't even imagine the wait time to be seen if we were not admitted. I quickly learned this was a HUGE blessing. I didn't even know that CHOP was well regarded in this area. I guess I was in denial about him having any type of IBD, and really thought the doctors were negligent to even suggest something like this without confirming though testing. At this point I do understand their reasoning given all the symptoms my son is experiencing. I just pray whatever his issue treatment will help with simple things like eating and using the bathroom.

Thank you again for your time!!!! Parents like you are such a valuable resource!!! Your feedback alone honestly means the world!!! I will keep you posted.
 
Hi rhall, I'm so sorry to hear about your youngster having to go through this. I don't have any experience in this area to offer you, however, I just wanted to send my support and say that this website is a good means of information with parents who have dealt with many issues with their kids. Please keep us posted. Big hugs.
 
My son will be getting scoped on Thursday. The process has taken longer because we needed to have an oral surgeon conduct a biopsy. The doctor isn't sure she will find anything when scoping since he doesn't have inflammation in his stool. He does however have inflammation and rawness in his mouth. They believe this can give them a diagnoses. I'm not sure if any of you have heard of this, but I'm continuing to pray that he will get relief soon. Do you also think I should post this as a question for any other parents - Diagnoses through the mouth?

As I previously mentioned, him holding his stool to avoid from going has really, really left him in so much pain. He has a very big fear to go which is very understandable. I was told yesterday that our hospital has a psychology team that helps young children with this issue. I will call on Monday to make an appointment.
 

Maya142

Moderator
Staff member
My daughter has had fissures and she has described it as "pooping out pieces of glass." She was diagnosed at 16 so she was always old enough to understand that if she did not poop, her poop would get hard and it would make having a BM even more painful. A young child may not understand that though, so I highly recommend a psychologist.

My daughter saw a psychologist who actually works in the GI dept. of our children's hospital (we were also at CHOP though she has now aged out and transferred to an adult GI) and specifically sees kids with chronic GI issues - including kids with Inflammatory Bowel Disease, such as Crohn's or UC, kids with IBS (irritable bowel syndrome) and even just kids with severe constipation who are too afraid to poop, for whatever reason. If you are at CHOP, you are in VERY good hands!! My kiddo was hospitalized there several times and got great care. I have also heard very good things about the VEO IBD program (if he is diagnosed with IBD after scopes) from other parents.

For my daughter, we tried several things. Sitz baths, of course, for the pain. You could also put any sort of diaper cream (like Desitin) or our personal favorite, Calmoseptine (which is like a thicker and better version of Desitin, according to my daughter) on his bottom BEFORE he has to go and then reapply after he goes. You can get it online from Amazon or in some drug stores (our local Walgreens has it OTC).

The thing that helped her most (although she HATED them) were hydrocortisone suppositories. The problem with them was they were very painful to insert. But usually just a few nights of suppositories would start healing her fissures and pain would go down. For her, she honestly felt a lot better just after 3-4 nights of suppositories - much less pain while having a BM. So while at first she really, really resisted them, she quickly learned it was better to put up with the suppositories because they really helped heal her fissures quickly. She was told to do them right before bed, which is supposed to help the child retain the suppository (if they're awake, they'll feel the urge to go poop until the suppository dissolves). For her, they worked much better than just the hydrocortisone cream.

If suppositories are too painful, they may be able to give a hydrocortisone enema - some are liquid and can be hard for kids to retain, but others are foam and apparently you barely feel them (my daughter has never tried the foam kind, but others parents on here have kids who have tried them).

Also, we use flushable wipes instead of toilet paper - they are gentler. Also, if he's not already on a stool softener or Miralax, those might help make sure his poop isn't hard, so it's less painful for him.

Good luck with scopes next week!! I hope they will give you some answers.
 

Maya142

Moderator
Staff member
I wanted to add - for his scopes, he will have to do a scope prep (usually it's Miralax mixed with Gatorade or Pedialyte). He's going to be going to the bathroom a LOT the day before the scope - next Wednesday. But it will be liquid stool mostly, so hopefully it will hurt less. But he will be going to the bathroom a lot, so I'd have things to distract him ready - he can watch movies or TV on a tablet/ipad or maybe play video games or something like that. Expect him to be hungry and cranky that day - but he will be allowed to have popsicles and jello to fill his belly so he isn't completely miserable because he's hungry. Distraction works best, in our experience - a new toy (legos or whatever he likes), a new movie or a present for being really brave might help ;).

You may also want to consider getting pull-ups for that night, since if he tries to hold his poop after taking laxatives, he'll probably have an accident. Also, when you take him in for scopes the next day, I would take an extra change of clothes for him. They will give him a gown to change into, and they'll probably put in an IV after he's asleep, so hopefully he won't have to deal with any pokes, and they used to allow parents to go into the procedure room until the child falls asleep. Also, at CHOP, they used to give your scope times by age - so babies and little kids got the earliest appts. so they don't have to stay hungry for too long.

I'll tag @my little penguin, @crohnsinct and @Pilgrim to see if they have any other tips and tricks that might help a young child through scopes.
 

my little penguin

Moderator
Staff member
Kool aid makes a clear worded version
Gatorade organic is also clear
Check ahead of time of colors permitted every hospital is different in terms of popsicles /jello /Gatorade
Start early since it will be 4 hours before things move

you can ask your doc for anti nausea meds
They let Ds take zofran if needed in the car
Empty bellies still can vomit
Get calmoseptine (bum cream behind pharmacy counter ) use it all day to kerp
The bile from burning the skin while he cleans out
We were told when the stool resembled Mountain Dew yellow your clean
It will be all liquid and no solid at the end
Ds said it’s like “peeing “ out your bum

some hospitals give versed before the procedure “sillyjuice “ to make the kids calm and forget

in Ds case when hewoke up he was a bear due to versed so we avoid now but he is older

bring a stuffed animal for him
They will put it in the bed when he is groggy and waking up
So he doesn’t get scared before you get back there

bring a backpack for yourself with breakfast and lunch since you may not get time to go get food inbetween
Bring an overnight bag for yourself and him
Leave it in the car
In case they make you stay the night afterwards

bring a extra portable phone battery
Do not use the charging stations there
Sometimes the door locks and you can’t get your phone back
 

Maya142

Moderator
Staff member
Oh yes - forgot about that! My daughter often got offered versed, which they called "giggle juice" I think or something like that - I've heard several versions at different hospitals! It's used to calm kids down before taking them back into the scope/procedure room. Sometimes it can have the opposite affect like mentioned above, but my daughter said it made her feel loopy and calmer. They can also call Child Life Therapists who come in and help distract upset kids.

It is a large volume that they have to drink, so nausea is common. Your kiddo might say his bottom burns - I remember my daughter had scopes once while she had open fissures and she said the diarrhea made it a burn a LOT. She's generally pretty tough and found that quite painful. Even Desitin burned- I think it was then we switched to Calmoseptine. She still uses it whenever she has a lot of diarrhea - I would definitely try and get it for your kiddo. You could also call and ask to speak to his doctor or a nurse practitioner who might have other ideas about what would ease the scope prep for a kiddo with an abscess.

Also wanted to add - you had said your GI said she wasn't sure what she'd find since his stool test did not show inflammation, but it's still possible to have IBD and have normal Fecal Calprotectin results. Not common, but it's possible.
 
Thank you so much ladies for all this information!!! I so appreciate you taking the time to help me!!! I took notes and did write out everything you suggested to share with my husband. My stomach is already in knots thinking about the scope and prep. As I've mentioned, using the bathroom and pain he experiences is a massive issue. He finally within the last two days learned that holding in his stool brings on more pain, and has gone on his own twice without a suppository. The thought of him continuously going scares me to death. I'm really torn as I don't know if I should push this back until his bottom improves or just get the process over with. If he didn't have inflammation and rawness in his mouth I probably would wait. My son has endured so much pain these past few weeks, and he is so young that it just makes it hard to deal with. It's been three weeks since all this started to go down hill, and I can't say I'm feeling any better. It's just really hard knowing what the best decision is.
 

Maya142

Moderator
Staff member
You can always message your GI and ask his or her advice through the patient portal. Or you can call and ask to speak to the nurse or GI. My worry with waiting is that the sooner you start Crohn's treatment (assuming he's dx with IBD of course), the quicker he'll heal. His fissures may not heal unless he gets that treatment, so you don't want to delay diagnosis. Plus, fistulizing disease is considered severe and the earlier you act, the less like likely he is to develop complications from the disease - like most fistulae or abscesses or the need for surgery. So while it will be hard, I'd do it. I'd just bribe him with games, new toys or something that will help him focus on something besides the pain (plus, they'll make it easier - for you and the kiddo!!) And he can probably use a Sitz bath until he has to go again. Just reapply Calmoseptine after each BM.

I would actually even ask about starting the prep earlier - some kids, especially those who tend to be constipated), take longer. Plus, if you get things going earlier, he'll sleep better at night (often kids are forced to stay up because the diarrhea on prep day won't stop). They often say to start at noon the day before the scope, but you can start the prep 2-3 days earlier in the week. You wouldn't give him the whole prep amount that, just like 1-2 capfuls a night (vs. the 8 capfuls of test day) to make sure he is not backed up on prep day - it can greatly shorten the time he has to go on prep day (you can stop the prep when is stool is completely liquid and clear - it's like yellow-ish clear liquid). So instead of 8 capsful on prep day, he may have to do 5 (By capfuls, I mean capfuls of Miralax. Also, he won't really have to take 8 - that's they use for kids over 12 mostly - a 4 year old will have to take MUCH less). Some hospitals even suggest a low residue diet for a week before scopes - no veggies or anything with a lot of fiber. But you could also just start earlier in the day - like8 am instead of noon. Then if he's in a LOT of pain, you can call and ask them what to do. Or take him to the CHOP ER if pain is really bad.

Hang in there - I know we're making it sound awful, but kids are remarkably resilient. Once he actually gets to the procedure, that will be the easy part - just a nap!!
 
Hi my heart goes out to you both. My gaughter was diagnosed at two and her presenting symptoms were fissures.... Going to the bathroom was such a nightmare. We used to just distract distract distract.... Do a funny dance sing a song.. Anything to take mind of the pain. We used to bath every night with hibiscrub. Over time I got to know the cues if she was holding it in so straight to bathroom and distract, I found getting her sitting on the loo as quick as possible was better as she wasn't able to hold once sitting so it was over quicker. Hugs and hope you have some concrete answers today. Lucy's mouth was also inflamed at diagnosis and biopsy was taken
 
Hi! Thank you so much for asking. I was actually logging on to give you all an update. We had an appointment with his GI doctor on Tuesday. I had expressed to her again my massive concern about his fissures and the pain they cause him. I've been off work because of this issue. She reassured me that they were not that bad, and it was more psychological by him holding which was making his pain worse. I didn't like how she was down playing his pain. It's honestly been hell as he can go for days being hysterical holding it in. It is the saddest thing I've ever seen. With that being said she helped me get an appointment this coming Monday with one of the GI Psychologists. I was told that she is really good with smaller kids.

During the appointment, I also expressed my concern of us reaching a wall with my son being over it all - medication (antibiotics), sitz baths, creams, drinking, etc. It might be hard to believe but he only likes to drink water. Since Miralax makes his stomach hurt he doesn't drink much anymore since he associates it with making his stomach hurt. As a result, I was very concerned about cleaning him out on our own. She actually had already read my mind because she scheduled the cleaning to be done at the hospital yesterday. I didn't even know they did this. I was sooo thankful!

We got there at 8:00 and didn't leave until 4:00. They gave him the solution through a tube they placed down his nose. The process was lengthy because he was holding and only went twice. We ended up having to do an x-ray and the doctors were ok with the amount left that they saw. I was told they could flush him out if needed. He did go when we got home which did help. So all in all I was thankful we had help and his day was ok on the pain end.

I followed your suggestions and packed all of us a bag and did bring food to eat among the other things you suggested. This was great as I felt like I had a lot of things we needed with us. They had us arrive today at 10:00 and started at 11:45. It took them two hours which really concerned us. The oral surgeon part I believe was no more than 15 minutes. With that being said we were told he has three fissures. That definelty was very hard to process, my poor baby. The doctor was very surprised by this (I was not!). We are now to give him two cap full of Miralax everyday.

She didn't find anything with the scopes as she suspected but took lots of lab work to rule out other possible things. Her tone was very clear that his case is very text book (fistula, fissures, abscess, ulcers) and even if the biopsies don't show Crohns she can still provide a diagnoses to start him on medication. She didn't say those exact words, but that's what it sounded like to me and my husband.

The oral surgeon told us that ulcers were beginning to form in his mouth. We didn't know this as we only were told and could see bleeding and inflammation. He got enough from the back that he didn't have to cut his gums in the front which would of been painful. I was thankful for that. Our doctor had help in the operating room from someone else who I really liked. He placed a seton in my son's abscess. I believe that the fistula is not letting it heal properly. The doctor also put him back on antibiotics.

I was terrified to see my son and couldn't stop thinking about the pain he would be in. He actually woke up acting very normal and asking to eat. He didn't complain of pain and went to sleep comfortably tonight. I pray as the medication wears off tonight his bottom won't be too soar tomorrow. I have been giving him Tylenol but that doesn't do anything for him. The doctor mentioned seeing some bruising as she came back down when scoping. I wasn't sure how to respond to that.

As always my concern has been his fissures and relief. It's really sad that nothing much can be done. She really had limited suggestions on what else we could do. I did ask if she could ask any other parents who have similar cases what they used or did. When she returned to check on my son she gave me the name of two products the nurses gave her but they don't look to be for pain management and only creams - Balneol and Balmex.

I will continue to pray that I can give my son some type of relief. He asked me last night if his bottom was always going to hurt him. That was hard to hear. I've been very down and not optimistic about things which isn't even my personality, but this fissure business is unimaginable. I grew up with sickly parents and my husband had brain surgery two years ago, so I've always known the value of health and always prayed so hard about this for my children. At this point, I will continue to take things one day at a time and believe it will get better.

Sorry for writing so much but thank you again for caring and reaching out! I'm grateful that these past two days went better than expected and its over! You all gave me the push I needed to get it done. Thank you very very very much!
 
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Hi my heart goes out to you both. My gaughter was diagnosed at two and her presenting symptoms were fissures.... Going to the bathroom was such a nightmare. We used to just distract distract distract.... Do a funny dance sing a song.. Anything to take mind of the pain. We used to bath every night with hibiscrub. Over time I got to know the cues if she was holding it in so straight to bathroom and distract, I found getting her sitting on the loo as quick as possible was better as she wasn't able to hold once sitting so it was over quicker. Hugs and hope you have some concrete answers today. Lucy's mouth was also inflamed at diagnosis and biopsy was taken
Thank you so much for the feedback! Can you tell me what ointments you used? How long did it take for them to heal? What did you use to keep her stool soft? If she was put on medication did you find it to help? Sorry for all the questions.
 
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crohnsinct

Well-known member
I am glad he got through the scopes well and that you are on your way to answers. I have had two my girls deal with fissures. One was simply from extreme constipation which eventually lead to rectal prolapse and encopresis. She was holding her BM's also. For her we eventually had to put her on a long term protocol of Miralax and Senna to keep things really soft so holding wasn't an option. She dealt with this for about 4 years and eventually stopped the holding and went on to have perfectly normal BM's after that.

One of my girls with Crohn's has fissures all the time. Not from constipation as much as how frequently she goes. She uses suppositories for her disease in her rectum and sigmoid colon but they also help heal the fissures. She was also given proctozone cream (a hydrocortisone prescription cream) to use for the very end of the anal canal and bottom. That healed the fissures right up. Healing them is the easier part but unless you treat what caused them to begin with you will only end up dealing with them again. Hopefully the GI Psychologist and GI can help fix the cause.
 

Maya142

Moderator
Staff member
I didn't like how she was down playing his pain. It's honestly been hell as he can go for days being hysterical holding it in. It is the saddest thing I've ever seen. With that being said she helped me get an appointment this coming Monday with one of the GI Psychologists. I was told that she is really good with smaller kids.
I'm sorry to hear your GI downplayed the pain of fissures - my daughter actually teared up when I told her about your son and his pain and she is one tough kid - she has severe arthritis in addition to IBD, she's had 8 surgeries, including having joints replaced at 22 (she's a college student now) and she still says fissures can be horribly painful and she felt really bad for your poor little boy. She was much older (a teen) when she started dealing with fissures, and so she was able to understand the whole "holding your poop makes it worse" logic - she said a 4 year old must be SO confused and afraid. She said to tell your son that no, his bottom won't always hurt. That fissures do heal and to tell him that her GI (also at CHOP, although now she has moved and no longer works there) gave her medicine to make her bottom stop hurting.

I'm kind of surprised they didn't suggest hydrocortisone suppositories, because that's what both my daughter's GIs have prescribed (pediatric and now adult) when she has fissures.

I can tell you that the GI psychologists at CHOP are excellent. My daughter saw one for years. Hers was absolutely wonderful and they are used to working with kids with IBD who have fissures/fistulae and kids who have fissures due to very severe constipation. So hopefully that will help. You are welcome to PM me if you want to ask any specific questions about the GI psychology appts. - my daughter does still see her psych at CHOP.

I'm sorry to hear that it does look like IBD, but honestly, since he has a fistula and an abscess, that was what I was expecting. I'm surprised his GI was not more compassionate though - poor baby!! 3 fissures, a fistula and an abscess and mouth ulcers and he's only 4. My guess is that he'll be put on Remicade, since it works best for fistulizing Crohn's.

My daughter's first scopes were definitely 2 hours though - that shouldn't worry you. They just look very carefully for signs of IBD.

I hope they can get him on a treatment plan that works, quickly! If the pain becomes unbearable for him, I'd honestly call the on-call GI and ask what to do. When my daughter had severe abdominal pain I once called the on-call GI to ask what to do and they wanted us go into the ER to give her something for pain and for monitoring. They can admit him if you cannot control the pain at home.

For fissures, we were also told my daughter had to develop a toilet routine - I think she had to sit on the toilet for 15 minutes after dinner or something like that. The idea is to get into a routine to sort of "re-train" the bowel, because when a kiddo is severely backed up, the bowel can get dilated and the muscles can become weaker once you start relying on stimulant laxatives or suppositories. Or something along those lines...it's been years since my daughter dealt with this! The psychologist will help you come up with a plan.

Hang in there!!! I'm so glad things went (relatively) well.
 
Thank you so much for the feedback! Can you tell me what ointments you used? How long did it take for them to heal? What did you use to keep her stool soft? If she was put on medication did you find it to help? Sorry for all the questions.
Hi there
Every ointment known to man......can't really remember the names! Bath in hibiscrub every night and then we tried various dressings which didn't really work as it was difficult at times to keep them on. Tried 6mp, lots of antibiotics and remicade before it finally healed with humira . It took a long time to heal and anything that was topical had no effect,
 
Hi there had posted before I saw update from scope. Your little man sounds so like Lucy was at diagnosis. I am annoyed for you that your gi didn't seem to take the pain seriously
What did you use as a stool softener? My son is taking Miralax and its hurting his stomach. Also what made you change from remicade to humira? was it based on the fissures not healing?
 
Hi there
Every ointment known to man......can't really remember the names! Bath in hibiscrub every night and then we tried various dressings which didn't really work as it was difficult at times to keep them on. Tried 6mp, lots of antibiotics and remicade before it finally healed with humira . It took a long time to heal and anything that was topical had no effect,
ok, thanks for letting me know. I will look into hibiscrub. i posted a few more questions for you below.
 
I am glad he got through the scopes well and that you are on your way to answers. I have had two my girls deal with fissures. One was simply from extreme constipation which eventually lead to rectal prolapse and encopresis. She was holding her BM's also. For her we eventually had to put her on a long term protocol of Miralax and Senna to keep things really soft so holding wasn't an option. She dealt with this for about 4 years and eventually stopped the holding and went on to have perfectly normal BM's after that.

One of my girls with Crohn's has fissures all the time. Not from constipation as much as how frequently she goes. She uses suppositories for her disease in her rectum and sigmoid colon but they also help heal the fissures. She was also given proctozone cream (a hydrocortisone prescription cream) to use for the very end of the anal canal and bottom. That healed the fissures right up. Healing them is the easier part but unless you treat what caused them to begin with you will only end up dealing with them again. Hopefully the GI Psychologist and GI can help fix the cause.
Thank you very much for your feedback. I sent the GI doctor a note about the proctozone cream. I'm glad to hear your daughter's fissures healed quickly.
 
I'm sorry to hear your GI downplayed the pain of fissures - my daughter actually teared up when I told her about your son and his pain and she is one tough kid - she has severe arthritis in addition to IBD, she's had 8 surgeries, including having joints replaced at 22 (she's a college student now) and she still says fissures can be horribly painful and she felt really bad for your poor little boy. She was much older (a teen) when she started dealing with fissures, and so she was able to understand the whole "holding your poop makes it worse" logic - she said a 4 year old must be SO confused and afraid. She said to tell your son that no, his bottom won't always hurt. That fissures do heal and to tell him that her GI (also at CHOP, although now she has moved and no longer works there) gave her medicine to make her bottom stop hurting.

I'm kind of surprised they didn't suggest hydrocortisone suppositories, because that's what both my daughter's GIs have prescribed (pediatric and now adult) when she has fissures.

I can tell you that the GI psychologists at CHOP are excellent. My daughter saw one for years. Hers was absolutely wonderful and they are used to working with kids with IBD who have fissures/fistulae and kids who have fissures due to very severe constipation. So hopefully that will help. You are welcome to PM me if you want to ask any specific questions about the GI psychology appts. - my daughter does still see her psych at CHOP.

I'm sorry to hear that it does look like IBD, but honestly, since he has a fistula and an abscess, that was what I was expecting. I'm surprised his GI was not more compassionate though - poor baby!! 3 fissures, a fistula and an abscess and mouth ulcers and he's only 4. My guess is that he'll be put on Remicade, since it works best for fistulizing Crohn's.

My daughter's first scopes were definitely 2 hours though - that shouldn't worry you. They just look very carefully for signs of IBD.

I hope they can get him on a treatment plan that works, quickly! If the pain becomes unbearable for him, I'd honestly call the on-call GI and ask what to do. When my daughter had severe abdominal pain I once called the on-call GI to ask what to do and they wanted us go into the ER to give her something for pain and for monitoring. They can admit him if you cannot control the pain at home.

For fissures, we were also told my daughter had to develop a toilet routine - I think she had to sit on the toilet for 15 minutes after dinner or something like that. The idea is to get into a routine to sort of "re-train" the bowel, because when a kiddo is severely backed up, the bowel can get dilated and the muscles can become weaker once you start relying on stimulant laxatives or suppositories. Or something along those lines...it's been years since my daughter dealt with this! The psychologist will help you come up with a plan.

Hang in there!!! I'm so glad things went (relatively) well.
Thank you so much for your feedback. I'm very sorry to hear about your daughter. She sounds like an amazing girl. I also appreciate her thinking about my son. Yes, I pray once we have a plan through the psychologist and start on medication things will improve.
 
Hi we used a product called Duphlac as stool softener and movicol to ensure a regular bowel. Branding is different here so could very well be the same thing. She also used salofac rectal foam had no effect, the pain was a problem but they were reluctant to prescribe anything other than Calpol and because her time for going was 7 pm I used to give her some a half an hour before - not sure it had an effect. Summary of meds
- Long term flagyll and cipro- started with this
Added 6 mp after a few months
Added prednisone for 3 months some improvement -
Used buedinsone mouthwash as required for mouth and went on cinnamon and benzoate free diet.
She was on all of the above together
Tapered prednisone symptoms returned
Decided to start remicade - age 4 Initial improvement stopped after 4 infusions as started to get worse again and having reaction . Needed to wash out and also took time to give mmr vaccine as can't be given on biologic
Started humira and methotrexate improvement after 3 months and fissures fully closed by 9 months and stayed that way for 6 years.
Upshot is that for Lucy it took biologic to sort her.
The hibiscrub is really just to keep it clean. When are you back to discuss the plan. That's all I can think of , if you have any specific questions let me know. Big big hugs to you all, what you are going through is hesrtbreaking but once you have a diagnosis, they will be able to discuss a plan with you and make decisions as to next steps.
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Hi we used a product called Duphlac as stool softener and movicol to ensure a regular bowel. Branding is different here so could very well be the same thing. She also used salofac rectal foam had no effect, the pain was a problem but they were reluctant to prescribe anything other than Calpol and because her time for going was 7 pm I used to give her some a half an hour before - not sure it had an effect. Summary of meds
- Long term flagyll and cipro- started with this
Added 6 mp after a few months
Added prednisone for 3 months some improvement -
Used buedinsone mouthwash as required for mouth and went on cinnamon and benzoate free diet.
She was on all of the above together
Tapered prednisone symptoms returned
Decided to start remicade - age 4 Initial improvement stopped after 4 infusions as started to get worse again and having reaction . Needed to wash out and also took time to give mmr vaccine as can't be given on biologic
Started humira and methotrexate improvement after 3 months and fissures fully closed by 9 months and stayed that way for 6 years.
Upshot is that for Lucy it took biologic to sort her.
The hibiscrub is really just to keep it clean. When are you back to discuss the plan. That's all I can think of , if you have any specific questions let me know. Big big hugs to you all, what you are going through is hesrtbreaking but once you have a diagnosis, they will be able to discuss a plan with you and make decisions as to next steps.
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Thank you this is helpful!!! I so appreciate your feedback. I honestly can't express my gratitude of how kind each of you have been. I will look into everything you wrote out. You mothers are giving me a lot of hope that things will improve over time. I just have to keep reminding myself of this.
 
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Hello ladies. I hope each of you and your children are doing well this week. We received word today that my son does have Crohn's. We are hoping to start on Remicade within the next two weeks. I'm being told it normally takes this long for the insurance to approve the medication. We did see the GI psychologist today who was helpful. She gave us numerous resources that I will start looking into - support group, classes, case worker details, books, etc.

I do like our doctor. She is younger but appears to be very knowledgable and involved in a lot of research. I've been impressed at all the stats that she is able to provide to us as well. I forgot to mention before our procedures that many of the research members came to ask us to participate in numerous studies. It appeared to be very standard. With that being said, should I try to move my son into CHOP's Very Early Onset Inflammatory Bowel Disease (VEO-IBD) Clinic? Are there more benefits/resources to be part of this group?

Thank you again for all your feedback. I hope to keep in touch as you all have been a wealth of information and support for me as we continue through this process.
 
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my little penguin

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Veo benefits
Genetic testing -whole exome sequencing
Immunology screening since the young have extra stuff that can be related
Nutrition
Gi who are used to the extras of tiny patients that don’t follow the crohns rule book on symptoms and treatment
 
I will take the list you wrote out and ask my doctor if we will be offered the same level of care if we are not transferred into the group. Thank you very much for your feedback!
 

my little penguin

Moderator
Staff member

So you can see immunology separately or genetics separately or psych or social work etc..
But if you see veo ibd clinic
They schedule all of the departments to come see you at once
You stay in the room and each doc /department comes in
One after another
You don’t need to repeat the story they share in between
Truly one stop shopping
Only the docs in the clinic participate in the nih genetics study so as long as you are an active patient of one of them they keep looking over abs over at the genetics as things change
If you leave to go see another chop Gi
Your child is no longer part of the study and can’t have the genetics reviewed again
 

my little penguin

Moderator
Staff member
Did want to add there are only a handful (3-5 ) veo ibd clinics in the entire US who specialize in what happens with the very youngest ibd kiddos and how they differ from their teenage peers in disease /treatment
 

Maya142

Moderator
Staff member
My kiddo was seen at CHOP but was diagnosed at 16, so was obviously not in the VEO clinic. I honestly think the VEO clinic sounds like the right place to be, given how young he is. IBD in a toddler seems to be different than IBD found in older kids and teens - in my experience (just based on being part of this forum for 7 or so years), it seems to be more aggressive and harder to control. I would utilize all the resources you can - it'll be a different GI, but one that knows VEO IBD. And a genetics workup sometimes provides very valuable info and is hard to get insurance to cover (I know because we've asked about it!).

You can probably still see the same GI psychologist at regular intervals. It's going to take him time to "unlearn" some of the bad habits - we dealt with constipation when my daughter was a toddler and then later, as a teenager. When she was a teen, it was much worse (probably because of her Crohn's), and it was a pain, but manageable because the teen understands what's going on. When she was a toddler, it was much milder, but she'd hold her BMs for a week because she was afraid to go. For a young child, it can be very hard and scary, and you don't want him to hold it any longer than he already is - it's a vicious cycle to break.

She was also given proctozone cream (a hydrocortisone prescription cream) to use for the very end of the anal canal and bottom. That healed the fissures right up.
Now that you mention it, M was given the same cream, but it was only applied externally. It didn't work as well for her as the suppositories, but it helped a little.
 

Tesscorm

Moderator
Staff member
When my son was young, 6, 7, 8 years old??, many years before his crohns dx, he struggled with constipation. He said it was because he'd hold it because he didn't want the 'interruption' while playing (I've never been convinced this was the only cause of the constipation??), he also had a fairly low fibre diet because of food pickiness. He'd then become constipated and have quite severe abdominal pain??

As the cause of the constipation is different, I'm not sure if the same treatment would work. But, what a doctor recommended were glycerin suppositories. They worked amazingly well! 15 minutes later, he'd go... and, in his case (no fissures), the pain would completely disappear.

Check with drs before trying but, hopefully, it can help.
 

my little penguin

Moderator
Staff member
Ds has constipation as part of crohns
So until his crohns was under control inflammation wise
If we used glycerin suppositories/prune juice /fiber /and most other known constipation tricks
It made Ds abdominal pain worse as well as constipation worse
So please check with your Gi first
 
I'm so sorry your little one has been diagnosed so young :(. My son had a fistula before being diagnosed with Crohn's. He started remicade and the fistula stopped bothering him almost immediately. It has been almost two years and I am hopeful it is gone. I hope the same for your son.

Since you aren't too far you may want to consider seeing Dr Grovitt who is in White Plains, NY. You can google him - people from all over the world have worked with him. He works with Crohn's pediatric patients from a nutritional perspective...he has Crohn's himself. My son follows his diet along with receiving remicade infusions. We figured we would hit this disease from all the angles! And it is not that hard to follow, thankfully!
 
Please excuse my very late response!!!!! The board notification I receive for new messages went to my junk mail. Thank you so very much for checking on my little guy. Life these past few weeks has been so crazy. I know we all feel it and are in this together.

My son is doing better. We have actually had normal days. The inflammation and soars in his mouth are gone. He still has a little bleeding when brushing his teeth but that isn't a big deal at this point. The big win is that he doesn't complain now when he eats of pain. He is going to the bathroom regularly again which is the best feeling in the world. I've been able to take him off Miralax. It does still hurt him to go, but its his norm now so he doesn't say much about it. I just make sure to give him a sitz bath after. His seton is still in place.

Our doctor called on Monday to let us know our insurance company approved his medication. I told her since he was doing so well I wanted to wait before coming to the hospital to complete the infusion. My parents live with me who both have compromised immune systems as a result of pre existing medical issues. I don't want to take any chances to expose them to anything.

The doctor did re-assure me that our local pediatric hospital has only had very few COVID cases, and they haven't been severe. They also don't appear to have supply issues as of now and have stopped accepting patients from NY from coming in. These were all great things to hear in case we had a real emergency and we could still be seen.

How is Lucy doing??? How are things in Ireland???
 

my little penguin

Moderator
Staff member
Confused so you already started remicade and you want to hold off on the next infusion ??
Or you haven’t started yet ?
Can you isolated yourself /your parents away since Covid-19 isn’t going away for a very very long time - 18 months minimum until a vaccine and multiple waves - more than likely yearly thing at this point .
Even if his symptoms are improving he still has a seton and inflammation that needs taken care of .
Do you have any adult siblings that could help with your folks ??
It’s tough .
Your child will also be immunosuppressed while on remicade and or steriods
Was he placed on steriods already ?
But then those put him at high risk as well ..

It’s a tough situation for all involved .
No easy or right answers no matter what you do .
 
Thanks for bringing up so many good points. No, we haven't started Remicade. We were waiting on the insurance approval. He was never given steriods only antibiotics that he is no longer taking since things have improved for him. My husband still has to work outside of our home and is in contact with a lot of people. As a result, he has been living in our basement. There is nowhere else to put my parents. LOL I have one other sibling who is younger and lives with me too. He actually finished medical school a year ago and was taking a year off before starting residency in NYC. I have a full house, but its been a blessing as everyone can help with both of my boys. I now work from home and the extra help has been great especially with my husband not around.

I told the doctor I would follow up in a week after giving this more thought. It's just a hard decision to make. I will say I'm thankful the worst for us happened a few months back since we were in and out of the hospital so much. My heart goes out to so many who are having a hard time receiving care or being able to have their children complete procedures.
 

my little penguin

Moderator
Staff member
Definitely talk to your doc
Because untreated crohns is like a fire hidden in your couch cushion
You may not know it’s there or later maybe a small amount of smoke but the fire can burst to the surface all at once for you to see
They don’t put kids on remicade lightly
It’s used to try and get things under control and stop the inflammation from progressing out of control /causing damage scar tissue etc...

even if you can’t start remicade can you have him do een ( formula only ) until you feel more comfortable.
Een is as effective as steriods and keeps inflammation at bay for most as long as solids are not introduced
They normally use this at chop for little kids
Most start in peptamen jr (semi elemental)
The durable medical equipment company for your insurance can ship it to your house ;)
 

crohnsinct

Well-known member
Hey there! I haven't had a chance to re read your whole story but if he has a seton that means he has a fistula, right? Fistula means that the disease type that your son has is considered penetrating. Penetrating disease ='s more severe disease. Young age at onset ='s more serious disease.

EEN doesn't have a great success rate at healing fistulae. Some do heal on their own but not a lot. Plus, without any maintenance med other fistulae are sure to form.

Remicade is the drug of choice with penetrating disease. It as a very good success record at healing a fistula and keeping them from coming back. It also has a very good success record with IBD in general.

Is he on any maintenance meds at this point?

I know it is hard to face the fact that your child needs meds to control this disease. Not one of us made the decision lightly. However, I will tell you that as soon as the meds work and you aren't thinking of Crohn's night and day, you hold on to those meds for dear life. We fought for 4 years to try to keep Remicade for my daughter. Even though it wasn't working 100%. We were too scared of life without the meds.

As for going in to the infusion centers, they are really very safe. Especially in the children's hospitals. There are very few kids with Covid in the hospital and those who are are not hanging out in the infusion center. They are on the floors. The infusion centers are taking temps of every person who walks in, not letting more than 1 person accompany each child, have moved the infusion chairs far apart, everyone wears masks and there is a copious amount of disinfecting going on. I dare say that infusion centers are safer now then they have ever been. On the flip side, if you delay infusion, you run the risk of your son heading into an all out flare and having to be put on steroids which will increase his risk way more than walking into an infusion center. Even worse, you run the risk of an admit and/or series bowel damage and possibly surgery in a not so opportune time. I don't want to scare you. Just trying to present the risks of both sides.

But I get it, you have to make the decision that works best for your family. Hopefully he could hold on long enough for all this Covid stuff to blow over. We are actually doing the same with our daughter at the moment. Hobbling along on not so great therapy but for us the risks of changing therapy or adding more steroids out weighs the risks of hanging out with moderate inflammation.
 
Thank you very much for your feedback. At this time my son is not on any medication. He has only been on antibiotics. I'm not sure if there was a miss understanding, but I've always been ok with my son taking medication. I just wanted to wait a few weeks to see how things were going to go with the virus. I can see now that things won't be resolved soon. With that said I made an appointment for his first three infusions. The first will be next week. My concern is from the medical professionals. This virus can be non systematic for sometime. The nurses or doctors who we come in contact with can have it and expose us to it. At this point, I really don't have a choice and will have to pray that God keep me and my son safe during our time in the hospital. I will be honest and say I will be very stressed once I return home and be around my parents. But, we will think positive and KNOW it will all be ok. Thanks again for your feedback as everyone on this board has been a true blessing to me. I can't begin to express my gratitude for everyone's support and concern. I pray that each of your families are safe and healthy!!!
 
When my son was young, 6, 7, 8 years old??, many years before his crohns dx, he struggled with constipation. He said it was because he'd hold it because he didn't want the 'interruption' while playing (I've never been convinced this was the only cause of the constipation??), he also had a fairly low fibre diet because of food pickiness. He'd then become constipated and have quite severe abdominal pain??

As the cause of the constipation is different, I'm not sure if the same treatment would work. But, what a doctor recommended were glycerin suppositories. They worked amazingly well! 15 minutes later, he'd go... and, in his case (no fissures), the pain would completely disappear.

Check with drs before trying but, hopefully, it can help.
I'm just now seeing your comment. I'm sorry for the late response. My son never had an issue with constipation. He didn't go because of the pain from his fissures. I did use suppositories but my son hated them so much. He always said they hurt, and I would do it while he was sleeping. The thought of the whole process honestly gives me PTSD. Things were so bad for him months ago, and things have really improved. He will start medication next week. Thank you very much for your feedback!
 
Hope the infusion goes well. My daughter's infusion is next week as well, so I'm with you on the coronavirus fears. I'm hoping that all the nurses will be masked (and we will be too). Our regular GI appt is today, but it will be by phone this time around.
 
Hope the infusion goes well. My daughter's infusion is next week as well, so I'm with you on the coronavirus fears. I'm hoping that all the nurses will be masked (and we will be too). Our regular GI appt is today, but it will be by phone this time around.
Our children's hospital is now requiring all staff to wear masks. We will have ours on. I'm sending you well wishes and strength for your treatment next week!
 
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crohnsinct

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Masks for all staff and patients is one of the AGA guidelines for infusion centers during the pandemic. Others include, taking temp of everyone entering infusion center and only 1 parent accompanying each patient. Patients 18 and up are asked to go to infusions by themselves., chairs are moved further apart and each patient has one nurse. If your hospital has to order meds from the pharmacy sometimes that could take a while for the mixing etc. Understandable that they don't want to mix ahead and have someone be a no show. If you are concerned about how long you will be there, you could ask if you could call when you get there and wait in the car until they are ready for you.
 
Masks for all staff and patients is one of the AGA guidelines for infusion centers during the pandemic. Others include, taking temp of everyone entering infusion center and only 1 parent accompanying each patient. Patients 18 and up are asked to go to infusions by themselves., chairs are moved further apart and each patient has one nurse. If your hospital has to order meds from the pharmacy sometimes that could take a while for the mixing etc. Understandable that they don't want to mix ahead and have someone be a no show. If you are concerned about how long you will be there, you could ask if you could call when you get there and wait in the car until they are ready for you.
Thank you! This was all very helpful to know. I appreciate your feedback.
 
Good afternoon ladies. My mother has Arthritis and also receives medication through infusion. She was surprised to hear that the doctor didn't give me any medication prep for tomorrow. She normally takes Benadryl or Tylenol/Motrin. Do you all have any feedback about this? Should I do anything to help my son through this process before or after the procedure? Thanks in advance!
 
Hi rhall - the nurses will give medication prior to the infusion. My son is usually given Tylenol and I know often Benadryl is given to some as well as Tylenol. Don't give him anything as he will be taken care of at the infusion site. Good luck!
 

crohnsinct

Well-known member
Years ago they used to pre medicate at infusion to lessen the risk of allergic reaction. However, a few years back studies indicated that it really didn’t matter so many GI’s stopped ordering it. Some old school GI’s still do it. Your center may do it for a first time infusion but I wouldn’t be surprised or concerned if they don’t. The important part is he will be watched throughout and if he has a reaction they will be able to act fast
 

my little penguin

Moderator
Staff member
^^^^yeah that !!!
They did give Benadryl and Tylenol at the infusion center while they waited for the remicade iv bag to come up ( they don’t mix it until your checked in )
But later decided not necessary
They will watch him like a hawk
And so will you
It will be ok and your infusion nurse will be someone you get to know very well
Hugs
 
The infusion went well yesterday, but my son has been complaining of stomach pains today. I'm not sure if I mentioned he also had an iron infusion. I read that iron can make you be constipated and to give Miralax if needed. With that being said he normally goes everyday and hasn't went. I'm wondering if this is true. I'm reaching out to the doctor but wanted to know if you all experienced anything like this if your children received both.
 

my little penguin

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Staff member
Oral iron can make you constipated or give you diarrhea depends on the kiddo .

I can say for ds when he got remicade infusion, humira injection or now Stelara he gets a reset day .
He gets tired ,belly pain no bm and then the next day he is golden happy normal kid again
In the beginning while the med built up only his gut stopped moving to “deal” with the inflammation .
Not sure 🤔 if it’s true but seemed like it for 24 hours then it restarted

See what the doc says
 

crohnsinct

Well-known member
Since this is all new for you I would just run it by the GI but I will say that when T (my younger Crohnie) started infusions she had this weird stomach ache thing. Lasted a day and went away. This lasted only a few months. It is hard to say because stomach aches are literally the number one kiddie complaint at doc's offices and could just be run of the mill kid stuff but I think you are totally justified in running it by the GI.
 
Thanks for the quick response. The Miralax really helped him go, and I do believe (hope) that was the issue. He didn't complain of pain today. The doctor mentioned receiving iron through IV doesn't cause constipation the reason why she prefers this method. Thanks again!
 
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