Embarrassing ? about anal pain...and EN

[Supermom]

My son gets no break what so ever it seems. Poor kid. The docs have maxed out his meds with Remicade every four weeks, methotrexate weekly, suppositories nightly, balsalazide daily, currently tapering prednisone for five more weeks. He gets up during the night three to five times to use the restroom and then its hard for him to fall back asleep so he is tired. Other meds he takes is folic acid, zoloft, zyrtec for allergies (and weekly allergy shots), Culturelle probiotic and a multivitamin. I have asked if all these meds are okay together and the docs have said yes.

When he is using the restoom, he is complaining of ALOT of pain on the inside of his butthole. Especially after the poop comes out. I know this is gross to talk about but maybe there are some other kiddos that have this same problem and what solutions may help with this problem. His primary care doc had mentioned at one time, when my son was in the hospital, a special cream but it was never ordered for some reason so I have a call in to him. Seems like when I call the GI doc they say they are doing all they can do.

The last time I had a visit with the GI doc, she said one last option would be EN through a tube. Of course at almost 13, this did not sound like a good idea to him. I have had his gall bladder tested. I have had him tested for food allergies, which showed some mild things but nothing to be overly concerned about as we met with a dietician as well. I dont know if all his urgency is from something he is eating, which he pretty much eats what he wants within reason of staying away from what he knows to. I have not yet cut out gluten or dairy (I did have him on Lactaid mlk just in case).

He is a very picky eater and has food anxieties as well. I dont know if I should try to do a trial test with him drinking only Boost nutritional drinks. I read on one of these threads that one kiddo didnt like the formula from the doctor so they drank eight Boost a day. Is Boost pretty similar to the EN formula??

We have had a second opinion with another GI at another hospital and she pretty much says the same thing. I am thinking of branching out to a GI clinic in Atlanta, GA this summer. I reasearched a Children's Digestive Clinic down there. Anyone from that area??

So if anyone has any suggestions regarding the anal pain and what they would do or try and should I try givng him Boost only for a week or two to let things calm down a bit? He goes Monday for his Remicde infusion, which I have had the Promethius test done twice to check for antibodies, and he does not have any. From what I remember with his colonoscopy (information overload), his terminal illium was not affected but pretty much everywhere else, I remember the word pancolitis.

You all have such great feedback and experience, any comments and suggestions would be very much appriciated! Have a blessed weekend!

 

[Samboi]

Has he got a fissure?
That's a whole world of butthole pain.
Ask him if it burns?
If yes - baby wipes are great for this. Or pooping in the shower with hot water on your butt. Sounds gross - but gives amazing relief.
A bidet does the same thing - but not many people have them.

There a whole bunch of other remedies for fissures too.

Poor little guy.

 

[Tesscorm]

Re the fissures, also try sitz baths with epsom salt, 10 minutes, 1-3 times a day.

Re the Enteral Nutrition (EN).

Have a look through the Kids on Enteral Nutrition thread and the subforum for Enteral Nutrition under Treatment. You'll find tons of info. But, in a nutshell,...

Exclusive EN usually runs 6-8 weeks of formula only, no food. This provides bowel rest, some mucosal healing properties, and all nutrition. It has a comparable success rate at induing remission as steroids. The formula can be ingested either through NG tube (which can be left in or can be inserted at night and removed in the morning) or the formula can be taken orally (shakes). If the tube is used, formula can be ingested completely overnight but hunger during the day can be more of an issue.

Some formulas are more easily absorbed - some examples would be Peptamin, Modulen, Elemental. Shakes like Boost and Ensure can also be used, however, I don't believe they are considered 'true' elemental forumulas and may not have all of the same benefits.

 

[Amy2]

Poor kid!

If he needs a feeding tube, I recommend that you watch a couple of videos online of it being done, first. I didn't and had no idea what to expect and therefore I allowed my son to be tortured, unnecessarily, by a nurses who clearly did not know what they were doing.

My son (16) did not like the taste of Peptamen at first, but now he does and has no problem drinking 8 a day and they keep him feeling satisfied, for the most part, too.

My son also had anal pain (and an actual chemical burn) when he went into the hospital and they also talked about a specific barrier cream that was never ordered, as he got better pretty quickly. If no one recommends a specific one, I saw they had many kinds on Amazon.

My son uses moist cleaning cloths...NEVER baby wipes, as they burn him!

 

[Supermom]

Im not sure if he has a fissure, nothing was ever said and are they detected through a colonoscopy? My son does use the Pampers sensitive baby wipes, says they feel the best and are soft. He says the pain is more like a throbbing, like he can feel his heartbeat. Says it hurts alot worse than his stomach. I have looked at the outside and there is not a tear or redness.

Is Peptamin and Modulen only by prescripton or can you get over the counter? His gag reflex can be bad at times so if he dont like the flavor then there could be a problem. He tried Ensure and didnt care for it but he says he does like the Chocolate Boost.

 

[Samboi]

A fissure can also be on the inside.
It won't necessarily be visible.
Give him a sitz bath directly after a BM and see if that gives him relief.
If it does - he probably has a fissure.
It is sounding very fissure like.

 

[Mallory's Mum]

My daughter gets fissures andnanal pain. We have a tube of Calmoseptine that the hospital gave us to use when she has issues.

We constantly struggle with symptoms somwe can relate. Hope he starts feeling better.

 

[Jmrogers4]

We did 8 weeks of pediasure peptide - my son thought it tasted most like Boost which is about the only one he could tolerate, didn't like Ensure.
The reason the GI gave for wanting him to do Peptide over Boost/Ensure is it is more broken down than Boost/Ensure so easier to absorb/digest.
He drank 8 a day. We are down to 2-4 a day depending on his weight, activity, how much he has eaten that day and we do not have to use the elemental formula anymore although we have not made the switch.
You don't have to have a Rx for them but if you are trying to get insurance to cover any portion you will need one. They are expensive. The least expensive I found for the Peptide was $145/case of 24 and at 8 a day it only last 3 days. We were able to get insurance to pay but we had to go through a durable medical supply company and have a Rx.

 

[crohnsinct]

My daughter was on Remicade and every time we weaned prednisone symptoms came back. Doc wanted to add Methotrexate but we opted for EN. Our doc had us start with Boost and Ensure and said we could move to the more broken down formulas if needed. We never needed to. The EN added to Remicade brought her to remission where she has stayed ever since.

Sorry, no advice on the pain. Good Luck.

 

[my little penguin]

Abbott nutrition and nestle nutrition have website stores that you can order it from.
Most gi's will give a script for en . We get DS peptamen jr through the durable medical equipment company. We have a script from the doc so insurance covers it . It is 169/case of 24 . He only drinks 2-3 a day now . He was a 8 a day.
Second the calmoseptine . DS uses that as well .

 

[CarolinAlaska]

Our peds GI said there were studies that show formulas like Boost and Ensure can work as well as the other predigested formulas if used exclusively. The Ensure was the only kind Jae could drink. After 3 weeks of Ensure only diet, she wasn't getting into remission, so she went to an NG tube to be able to do the other formulas. She is/was 13. This did the trick. I'd recommend him trying the Boost. If it doesn't work after 3 weeks, you can face the NG tube down the road. When was your son's last exam? They can do an anoscope which looks right at the anus, inside and out, to see what the problem is... I'm sorry after all these meds that he isn't reaching that place of healing.