My 10 Year Old Son's Story

[deannas]

My son has suffered from Perianal Crohn's since 9 months old. I have taken him to every major clinic in Florida but only his current doctor in Tampa has been able to help him but I need to know if there are more options for him. He has had so many fissures and fistulas and currently has about 6 skin tags. A new bump has appeared on his bottom that started as a small blister-like bump but continues to grow larger and is now larger than a pencil eraser, just on the inside of his butt cheek. He is scheduled for a soft tissue ultrasound on Monday, the 18th, because his pediatric GI and a pediatric surgeon are puzzled as to what this bump could be. My poor baby has been on and off Remicaid, has been on TPN for 3 months at a time, is currently on 1,000 mg of Flagyl, 6 mgs Entocort and 6 tsps of Lactulose each day. Tonight he was in so much pain from a fistula so I had him do a sitz bath and then I applied Protopic ointment to the inflamed area. He has been on Flagyl and Entocort for at least 4 years and it really worries me. He is always in so much pain and I can't do anything to get rid of it. When he was 3 and 4 years old he wouldn't get out of bed because he knew if he stood up he would have a bowel movement so he would just lie there. If anyone has any suggestions I would appreciate it, as I am new to this forum. Oh and just so you know his Crohn's is only in his perianal area, not in his colon. Thanks.

 

[Dexky]

Deanna, I'm so sorry!! I can't imagine how much your lives must have been turned upside down by that. You must have learned a lot over the years. What meds is he on? What foods can he tolerate or not? Please tell us more!!

 

[deannas]

Hi Mark. I just edited my post because I am new to this forum and wasn't sure what I should write but my story is now posted. Thank you for your concerns. He is not on a special diet. He does drink Boost Plus as much as possible because he has never made it on the growth chart. He is very small for his age. Just a high calorie and high fat diet and this is probably because his Crohn's doesn't affect his colon, only perianal.

 

[rottengut91]

hey deannas...
It breaks my heart to hear stories of younsters having to deal with illness. I also can't imagine what it does to a parent to watch their child suffer and not know what to do about it. There are many parents on here and young adults(teenagers) who can provide a great deal of insight. I too have had CD since I was 16, Im 35 now and just developed my first abscess/fistula. It can be very painful, but mostly is just unpleasant. Maybe it's time to ask for some form of pain meds, at least to get him through the really rough days.
I truly believe that knowledge is power. He needs your help with this. You have the power of the internet these days. Learn as much as you can. Of course everyone with CD is different. What works for some, won't necessarily work for others. Find something that both you and your son a comfortable with. That also includes his medical care. Don't ever be afraid to speak up if you disagree with a doc.
Anyway, welcome to the forum. Look around, there is a host of valuable info on here as well. The people, as you'll come to know, are wonderful.

 

[Dexky]

Again Deanna, I just can't imagine. Was he ok up to nine months or were there signs before that even? I'm not sure what perianal chrons means or what effect it has on his digestion? I'm sure it results in painful bowel movements regardless. Has he had any periods of remission?

 

[deannas]

Thank you Julie. I am sorry to hear that you too suffer from CD and I hope your fistula/abscess heals quickly. My son's name is Mason and he is such a strong kid. I have done so much research and even found a pediatric crohn's doctor that wrote books on pediatric CD. I took Mason to see this doctor who was 4 hours away from our home. We visited this dr. over and over for about a year before the doctor told us that the only thing he could offer Mason was lots of prayers. Another doctor at All Children's in Tampa told us he was at the end of his rope and could no longer help us. I am never giving up on fighting this horrible disease. I appreciate your post and hope to become more educated from others who are experiencing the same thing.
Thank you, Deanna

 

[deannas]

Mark..Mason was okay before 9 months old. He started experiencing severe constipation when I begin to introduce him to solid food. His CD only affects his bottom and causes fistulas, fissures and skin tags. He has very painful bowel movements. He always has a fissure or fistula but no instestinal issues at this point. He has never been in remission. Remicaid helps a lot but only if he gets the treatment every 6 weeks. As soon as we stop Remicaid the inflammation occurs again.

 

[Dexky]

Deanna, I'm clueless so I'll ask what may be a stupid question. Is a stoma to bypass the anus a possibility? Has it been discussed by any of your docs?

 

[rottengut91]

I think Mark's idea sounds like a viable option. Having a colostomy could provide his anal area time for relief and healing. Maybe having one temporarily could provide a better quality of life for him.

 

[deannas]

Mark.. we had Mason on complete bowel rest for 3 months and it did help. He had a pic line in his arm and wore a backpack that fed him with intravenous fluids (TPN). He gained 11 pounds and his bottom got better but as soon as he went back on food it flared up again. Drs have not discussed a stoma but have talked about a temporary colostomy. Mason is very opposed to a colostomy. I will research the stoma since you mentioned it. Thanks.

 

[rottengut91]

a stoma is what they call the small portion of intestine the put on outside of abdomen

 

[deannas]

Julie..so I am now assuming that a stoma is the same as a colostomy. Sorry, I am a bit clueless with some of the different terms. Mason is worried that a colostomy will be embarrasing at school and kids will find out and make fun of him. It might be our only option down the road.

 

[rottengut91]

I had a temp. ileostomy when I was 16, I too worried about what my peers would think. Most knew that I was very ill, therefore, it was necessary for my health. No one, at least to my face, ever made any negative comments. Most likely, no one would even know unless he personally shared that info with them.

 

[Dexky]

Deanna, colostomy is what I meant. The relief that some of these long-sufferers have had from their ostomies is uplifting to say the least. There is a stoma subforum under General IBD Discussion. There are negatives too but by far the relief they get seems to tip the scale.

 

[Crohns08]

This might seem like a dumb question but have you tried suppositories? I recently developed crohn's in my colon and perianal area and I was prescribed mesalamine suppositories and they've already helped me go from burning, painful bowel movements to no pain or burning at all in just a few days.

 

[DustyKat]

Hi deanna and :welcome:

Oh my, what a very difficult and heart breaking time you have all had. I understand your son's misgivings about having a colostomy done but how do you feel about it? Do think it has come to that as being the only way to heal his perianal area?

You mentioned Mason being better on Remicade and worse when he comes off, how many times has he been on it and why has he stopped it if it works for him?

Is there somewhere out of your state that may be of more help to you?

I'm sorry I can't be of more help to you but you have found a great place here for support and info so please stay around and keep asking questions and sorry for all my questions....... Good luck and welcome aboard!

Take care,
Dusty

 

[Astra]

Hi Deanna
and welcome

I'm sorry I can't help with this, I'm so sorry poor Mason has this at such a young age.
I really hope the people on here can help you.
We're all here for you, don't suffer in silence Deanna
Big hug your way Mason xxxx
lotsa luv
Joan xxx

 

[tannersmom]

deannas,
First hello, my son who is 11 has Crohn's disease. His first symptom was a rectal abcess that was just inside his cheek near his rectum. Your sons lump sounds just like my son's abcess. My son had to have his drained surgically 3 times(because it took so long to get it diagnosed as an abcess it got quite large). After that he has had no issue with it(did Remicade, which helped some),but his did not completely heal up. I hope all works out for your son! So sorry he is going thru this.