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Son just diagnosed, not responding to meds.

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Ulcerative Colitis
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Posted 11/20/2015 11:45 PM (GMT 0)
Hi. My 15 year old son was just diagnosed in Sept with pancolitis. He is in a nasty flare which we can't get under control. He has not responded to Delzicol (seemed to make him worse), predisone (up to 60mg- oral and IV), or Remicade 10mg/kg (3 doses) and 15mg/kg (1 dose). Dr is recommending either Cyclosporine and 6mp (scary and not good for teenage boys) or surgery. We are all so scared. This has happened so fast. Colitis runs throughout the family and so does colon cancer. My husband had J-pouch surgery so we are very familiar with the disease and the surgery. I was just wondering if there are others who did not respond to Pred and Remicade and what finally got them in control? Thanks.
Posted 11/21/2015 1:23 AM (GMT 0)
I am sorry to hear about this. I always hate when young people are diagnosed, but at any age, it's terrible. I hate to say it, but in your situation, with the family history and no response to the medication, i would probably consider surgery. Everything else is just a bandaid to keep you going until the next best thing and people like him (and me), we don't respond to anything, so even the next best thing probably won't give us relief and if it did, it might be for a very short time. it's not worth it. Maybe you could try some alternatives? Perhaps fecal transplant? Has he tried rectal meds?
Posted 11/21/2015 1:26 AM (GMT 0)
Oh boy, so sorry.
My son never had remicade but did have IV cyclosporine, had no effect.
He ended up with a pouch,but that was 15 years ago, now.
Since the meds do not seem to be doing much,you might want investigate fecal transplant.
It helps some.
Young people seem to have a very aggressive immune response, which is difficult to control.
Wish I could help more.
Old Mike
Posted 11/21/2015 1:38 AM (GMT 0)
A lot of people r having success with Entyvio
Posted 11/21/2015 1:41 AM (GMT 0)
He does take 1 cortisone enema per day. As for the fecal transplant, do you have to get into a trial and how do you do that? Can they do a fecal transplant while you're in a flare or do things have to calm down? One Dr said it was probably not a good idea to do while there's a lot of active inflammation. He does take VSL#3, Fishoil and is trying the SCD diet.

Old Mike: You're on no meds? Does smoking help your UC? My father in-law had UC back in the 1950's. He is 86 now, never took any meds, has had no signs of UC even via colonoscopy for ~50 yrs. He did smoke cigars and pipe.
Posted 11/21/2015 1:58 AM (GMT 0)
Fecal transplant isn't approved for UC but it is approved for C diff. Has he been tested for c diff? It can make UC extremely difficult to treat. I had stool tests 20x and they never came back positive. I believe there may be some trails you can join to get FT, or we have members who have done at home protocols. There was user called kamayka who was doing at home FT with their daughter and I believe they had luck.

I had surgery recently, and I have to say, the result is better than I expected so far. I am excited for a future without medication and doctors appointments.
Posted 11/21/2015 2:42 AM (GMT 0)
hi, my son never responded to pred or Remicade and ended up getting a full colectomy last January. He is now a j poucher and we couldn't be happier. Of course everytime he has some pain we panic, but we are happy with the result. It also happened very quick with our son.
Posted 11/21/2015 3:25 AM (GMT 0)
Hi,
Sorry to hear about your son.
Sharing some thoughts to consider...

If he is not responding to peridnisone- It could be C.diff. It very hard to get a C.diff positive in one lab testing. Sometimes have to test several times. C.diff symptoms are very close to UC flare ups.

Regarding fecal transplant- Most of them who has done it in this forum followed DIY at home.
I think couple of posters here took the guidance from DR.Lawrence J Brandt in NY. Browse the net for more info about this GI. He supports fecal transplant. Also do a search in this forum for FT
If you are considering fecal transplant - there is a facebook page for this and also check into POWER OF POOP website for success stories and recommendations.

Prayers for remission....
Posted 11/21/2015 4:58 AM (GMT 0)
He was tested 2x for cdiff and he does not have it.
Posted 11/21/2015 1:40 PM (GMT 0)
VSL#3 made me worse, or in fact just about any probiotic.
My story short form, quit smoking 1977, UC/proctitis 1980, azulfadine and cortisone foam up until
somewhere in 1981, not under control.
Started smoking again 1982, just about instant remission, quit smoking again 1986, flared,
restarted smoking which did not fix the flare this time.
Still in same flare, still smoke.
Still have colon,but live with symptoms.


PS:He might try stopping the VSL3, see if there is any improvement.

In fact probiotics make me much much much, worse.


PSS: Also get off of the fish oil.

This is new testing on mouse models.

http://www.ncbi.nlm.nih.gov/pubmed/26297475


Old Mike

Post Edited (Old Mike) : 11/21/2015 6:58:21 AM (GMT-7)

Posted 11/21/2015 3:10 PM (GMT 0)
There is also triple-antibiotic treatment that works for some people that do not respond to other RX meds. Do a search on this forum for it.

I am one of the group whose UC never responded to RX meds (although mesalamine enemas helped). Diet mod, probiotics and non-RX supplements are what worked for me but it took a long time to get everything under control. (I never did the triple anti-b treatment).

Sending good wishes your way. UC is not easy to get a handle on if you do not fit the drug regimen currently in use.
Posted 11/21/2015 3:26 PM (GMT 0)
I am sorry to read about your son, i am sure it will work out because you are all knowledgable! Best to you!

Traveler so happy to find out your son is doing well!!!!
Posted 11/21/2015 4:38 PM (GMT 0)
So... he only tried a single form of mesalamine? If Delzicol isn't working, there are other brands out there that may be worth trying. Maybe one brand "releases" at a better spot than another. Also, IMO you MUST give mesalamine enemas a shot before considering surgery. Probably the best bet for you would be mesalamine & steroid enemas taken at the same time. Sodium butyrate might be another ingredient worth taking rectally at the same time, but that's not standard treatment so you'd probably have to show your doctor the literature on it to get his support.
Posted Yesterday 1:41 AM (GMT 0)
I though that the mesalamine's were more of a maintenence drug not a rescue drug. He's in a nasty flare and unable to go to school or even have tutoring. Plus since he has pancolitis, I don't think the enema's are making all the way around the colon. Any thoughts?
Posted Yesterday 3:08 PM (GMT 0)
How does your son feel about all of this? Does he understand his medication options and the risks associated with various meds?

I ask because I have a life threatening genetic condition (not related to UC), which manifested symptoms when I was 9. I was a pretty sick kid, and once I was 12 or so, my parents really reinforced that I needed to get educated about and become responsible for my own health. I had to learn to follow my strict low sodium diet, research the drugs I was taking and the associated benefits/risks/side effects, and of course learn about my condition and prognosis. Ultimately, I made many very serious decisions at a young age with input from my doctors and parents, like whether or not I wanted to hang on to a dysfunctional kidney, etc...

I know your son was only diagnosed very recently and is probably most concerned with how to feel better as quickly as possible, but is he aware of the various classes of medication, etc? Does he read this forum and the ostomy forum?
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