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My son is having peeing difficulties in last few days

S

shawn's dad

New to the forum. I am really grateful to find this forum and happy to meet everyone here.

My son just has been diagnosed Fistulating Crohn's. He had two perianal abscess and one has become a fistula. Doctor has drained his abscess and performed Endoscop and colonocopy. The biopsy has found granuloma that is why the doctor has confirmed that he has Crohn's! I am still self-debating if I should put him on Remicade realizing it is a life-long treatment for him plus all the side effects. Currently he is still on Cipro and Flagel. I was desperately looking for alternatives.

In the last few days, he had urinal difficulties for two hours each day. No pain was involved. He said that he felt he needs to pee but only little came out. I have asked him to drink a lot of water and finally he peed no problem. This has been repeated for a few days. Does anyone experience this?

Also, any suggestions if I need to put him on Remicade? As a parent, I am really reluctant to make this decision. Can anyone share your story?

Really appreciated.
 
T

Tuff

Welcome to the forum, I'm sorry you had to find us.
I think you should inform his doctor about the urinating difficulty asap. I was in hospital with an abscess, when out of the blue I was unable to urinate at all. After a quick ultrasound of my bladder, they put in a catheter, I was full to the brim. It was left in for a month or so. I was never told why I got plugged up like that, but I think it was the abscess pressing on it.
 
C

crohnsinct

Well-known member
Second contacting the doc. Could be a number of things but with everything going on, doc should know about it.

Sorry about your son's dx but you have found a wonderful community here. Very knowlegable and the support is second to none.

We are Remicade fans here. My oldest Crohnie was put on it right away due to the severity of her condition. Within 6 months she was in clinical remission and has stayed there for the past three years. She has grown 8 1/2 " and gained 45 pounds. She has not had one cold, virus, etc fro, the immune suppression and has shared close quarters with kids who had mono, the flu etc.

My younger daughter had more mild disease and was put on Methotrexate (immunomodulator). We have been playing around for 8 months and she still isn't in remission. I am hoping the doc says Remicade at our next appointment.

With kids it is important to wrangle the disease as quickly as possible. The early use of biologics and getting to remission quickly has shown to reduce the risk of surgery down the road. You also want to heal them as soon as possible during the growing years so you don't miss out on any opportunity.

Also Remicade as the best track record with healing perianal issues.

All of the drugs are scary. Good luck with your decision! It is a steep learning curve. Be gentle with yourself. We are here for you.
 
Jmrogers4

Jmrogers4

Yes on contact doc,
Peeing difficulty in our family equaled inflammation pressing on bladder thus the feeling of needing to pee but nothing coming out.
Remicade has been a miracle for us. My son was diagnosed at 10, he is 16 now and started on remicade Jan. 2014. We currently have no crohn's symptoms and he has been in remission since about 6 months after starting remicade. It has allowed him to catch up on his growth and puberty (as the disease caused some pretty severe delays). He started out at 5'1" and virtually no puberty going on and in the year and 1/2 on it he has grown 9" and now has to shave.
He doesn't even think about his crohn's except once every 8 weeks for infusions. He does and eats everything every other teenage boy does (except popcorn and seeds). He went from missing 28 days first semester of his 9th grade year to not missing a day.
All that being said I struggled for years with putting him on remicade and tried many other things, other meds, diet, lifestyle etc. For him the only thing so far that has completely knocked the disease down is remicade but you need to find what works for him and your family and be ready to change quickly if something is not working.
Good luck and we're here for any questions you have, a virtual hug or just people you can vent to when things are rough and there really isn't much you can do but wait.
 
Maya142

Maya142

Moderator
Staff member
Hi and welcome!

When my daughters were first put on biologics, I agonized and I agonized about the decision. Eventually we decided to try them and they have been miraculous for both my girls. My older daughter is on Humira and is essentially a completely normal college student. My younger one is now on Simponi (but has been on Remicade and Humira) and her Crohn's is under control. She also has arthritis and that is still a work in progress but it is much better. I don't even like to think about where they'd be without these drugs -- eventually we realized that the disease is much scarier than the meds.

CCFA has a good presentation about the risks and benefits of various IBD meds: http://programs.rmei.com/CCFA139VL/

My girls had no side effects with Remicade except maybe a little tiredness after the infusion. They quite liked their infusions - it was a chance to miss school and relax and watch TV! The nurses fuss over the kids and it's only every 6-8 weeks for most kiddos.

Check out the parent's forum - there is a lot of great info there. Good luck!
 
S

shawn's dad

Thanks all your comments and supports! You guys are awesome and this forum is amazing! Sorry I didn't realize that there is a parent section. I will do my future posts there.

Anyway, I have phoned our GI doctor and he said that the urinal retention does not look like Crohn's related. I asked him if it is a side-effect of the Cipor or Flagel, he said the chances are remote. He has asked me to keep eye on him.

At the mean time, I have contacted the Childern's Hospital of Philadelphia for the 2nd opinion. Have anyone done that before? Any suggestions which doctor I should ask for? My GI doctor says that this is not necessary but I still think it is a good idea to have peace of mind.

Regards,
 
Jmrogers4

Jmrogers4

Lots of parents have done 2nd opinion even just a file review at CHOP. Never hurts to have a second set of eyes look at it.
 
my little penguin

my little penguin

Moderator
Staff member
We have had Ds 's pathology slides and charts reviewed three times and two second opinions.
Our Gi always welcomed a second set of fresh eyes
Ds has not been to chop though .

Good luck
 
A

araceli

Another fan of Remicade here. I had a second and a third opinion. It is very hard to make a drug decision, but once you see your kid getting better, you wish that that drug keeps working for ever. I hope whatever medicine you choose works well and fast. Sending Hugs.
 
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