Diagnosed feb 14 with UC...My son is 18yrs old

Hi, I am new to the forum, confused yet very much appreciative to all the wonderful stories, help and kindness seen here.
We live in Perth Western Australia.
My son was diagnosed with UC this February. His very first symptoms was a chronic cough, rectal bleeding and urgency. He is only 18yrs old.
He was hospitalized for 9 days on IV prednisolone (in Sydney). Then on leaving the hospital, he commenced 75mgs Prednisolone, with ALL side effects.
He tapered off Pred over the course of months with great results, but bleeding returned 5 days after Pred was out of his system.
He had iron infusion aprox 2 months ago with good results.
:( His current medication is Colifoam, prednisolone-(5MGS daily), Mezavant 1.2 (4 tabs daily). He was recommended Remicade recently buy his Specialist (gastro DR), but his father has lymphoma so reluctance was initial reaction.
DR said that its either Remicade or surgery!
Currently he has BMs x2-3 daily with blood, I think the Mezavant has stopped his frequency to a point.
I will thank you all in advance for replies

He also takes the following:
Slippery Elm
Probiotics
Vit C, Vit D, Multi Vit
Citracal D
Fish Oil
Floradix (natural Iron) 20MLS daily x 2)

PAST AND CURRENT MEDS
Prednisolone (High doses IV 100 in hospital then oral 75MGS tapering.)
Mezavant 1.2 (4 tabs daily).
Colifoam (evening and morning)
Salofalk enemas (evening only

I would read up on this disease as much as possible so you can be part of the treatment decisions. Please read the resources thread at the top of the page for starters. I hate it when doctors don't fully inform you of all of the choices available and then give you just two choices like there aren't any others. I find it interesting that you mentioned a chronic cough as a symptom of when the disease first started. That is highly unusual but could be an important clue. If the cough was really related to your son's UC and not just a coincidence then it is possible that his disease was triggered by some kind of a virus. That's more than most of us have to go on. If it were possible to figure out what virus it was and how to address it, it is possible that that could help or "cure" his UC if you could find a good treatment plan against the virus. Unfortunately, that is like looking for a needle in a thousand different haystacks. Still, you might have more to go on than most of us do.

hi Conquer UC and garylouisville. Thanks for your kind replies :)

I will definitely ask his gastro DR, but he is NOT open minded or so it seems. No he has not tried Imuran as DR says that as his dad has lymphoma, he would rather my son try Remicade, does that make sense at all to you?

I have done nothing but read up on UC, understand some of it, but treatments/options/diets etc I find quite overwhelming as to amount of info.

Entyvio sounds great, I will definitely be googling that one.

I just dont understand that my son was diagnosed with UC 5 months ago and now only these 2 choices.

How would one go about finding out what sort of virus he had? I would love to find out and move forward with that

Hi Marauder93
Thanks for yr reply and ALL that info its much appreciated. I will do some research on here and the internet and keep everyone posted on how I go.
I will buy some L-Glutamine as I have heard of this working well with UC, now that you have confirmed as well :)
I just feel overwhelmed with all that's on the internet, I was also wanting to try the “Specific Carbohydrate Diet” or SCD. any info on this diet anyone? http://www.ihaveuc.com/the-diet/
Cheers

Erika777 said...
Hi Marauder93
Thanks for yr reply and ALL that info its much appreciated. I will do some research on here and the internet and keep everyone posted on how I go.
I will buy some L-Glutamine as I have heard of this working well with UC, now that you have confirmed as well :)
I just feel overwhelmed with all that's on the internet, I was also wanting to try the “Specific Carbohydrate Diet” or SCD. any info on this diet anyone? http://www.ihaveuc.com/the-diet/
Cheers

There are definitely a lot of treatment options and it can certainly be overwhelming, but a lot of people on this forum know a lot about them so if you have questions or need direction, we are more than happy to help if we can. Dont feel like you're going at it alone!

If you do get L-Glutamine, you probably want to start him on a dose between 5-10 grams, as that seems to be pretty standard. Some people take a lot more, but start off slow. Also dont expect to see huge improvements right away. Its not a pharmaceutical and will do nothing to affect the immune system. All it does is give the body the energy it needs to repair itself, so it s along term aid.

A lot of people on here have done the SCD. Some swear by it and others hate it, but there are plenty of threads on here to read to see what people think. I dont know much about it so I cant comment on it beyond that.

Australia has a pretty good healthcare system and if I remember the research from my second year project, you guys have a publicly funded drug plan. Correct me if Im wrong. Either way, once Vedolizumab is approved in Australia you should be able to get it for your son pretty easily. HOWEVER, there may be the stipulation that he has to have failed another biologic before he can be approved for it (though that may only be true in the states due to privatized insurance companies).

Remicade also increases the chances of lymphomas, however the risk is only 0.0006%. Itll probably be slightly higher for your son given his history, but I dont think its much of a concern. In fact, I believe I have heard whispers of more recent studies that call this risk into question.

Moving forward, if I were in your shoes (depending on your finances obviously), I would start him on the L-glutamine, metamucil, and sodium butyrate and look into VSL#3. Add these in one at a time and see what kind of a difference (if any) each one makes. I mentioned before that VSL#3 is expensive, so if your like me and cant afford it, then I would say the next best option is to look for a less expensive probiotic. Youll want one with at least 50 billion cfu. There are tons of suggestions on this forum about brands, etc. Finally, I would probably move ahead with the Remicade. That will be the heavy hitter that will really have the healing affects, while the others will have a more supporting role (besides the probiotics).

Post Edited (Marauder93) : 7/22/2014 8:53:09 AM (GMT-6)

DBwithUC said...
Nutrition can be tricky. L-glutamine gave me diarrhea. It is the G in MSG after all. Just saying results vary.

Just like every other drug in the history of man kind :p But isint Glutamine usually used to help prevent diarrhea (in most bases, not necessarily yours obviously)

Marauder93...keep re-reading yr post with renewed hope, thanks. just wondering, how did you repost and quote my post? I can see the repost exclamation sign, do I use that, and where do I write my new message?

No problem, glad I could help. And yes just click on the exclamation point. A new screen will pop up with the post in question appearing between these: <quote> </quote>. You can type your message after the second one.

Erika,
Glad you found this forum. Sorry to hear about your son....

You asked about SCD diet- Yes DD strictly (100%) followed it for 2.5 yrs with good results.
As you know diet success varies with people. But definitely avoiding sugary,processed/packaged foods will do good for his body.
Before leaning towards surgery,please consider fecal transplant. Dr.Thomas Borody's clinic in Australia is specialized in this.

There are so many successful alternative therapies shared in this forum.I am sharing few ones I noted in my mind if a situation hits...
Some people gained remission by Spinach/sunflower seed diet.
Some swear by LDN- Low Dose Naltrexone
Some claims Bee propolis
Some like me promote Fecal transplant
Then there is nicotene therapy.(patches)
Just by avoiding glueten..

Start with the workable and make sense to your need...If interested, Just do a search in this forum
Best wishes..

Bloom93 said...
Erika,
Glad you found this forum. Sorry to hear about your son....

You asked about SCD diet- Yes DD strictly (100%) followed it for 2.5 yrs with good results.
As you know diet success varies with people. But definitely avoiding sugary,processed/packaged foods will do good for his body.
Before leaning towards surgery,please consider fecal transplant. Dr.Thomas Borody's clinic in Australia is specialized in this.

There are so many successful alternative therapies shared in this forum.I am sharing few ones I noted in my mind if a situation hits...
Some people gained remission by Spinach/sunflower seed diet.
Some swear by LDN- Low Dose Naltrexone
Some claims Bee propolis
Some like me promote Fecal transplant
Then there is nicotene therapy.(patches)
Just by avoiding glueten..

Start with the workable and make sense to your need...If interested, Just do a search in this forum
Best wishes..

Hi, and thank you for all this wonderful advice.
We most definitely will consider faecal transplant, we have looked into this a few months ago. Thanks for further info and DRs name.

Your advice sounds experienced and knowledgeable, really appreciate it

I saw this article on FaceBook this evening, its regarding The Paleo Diet https://www.facebook.com/peteevanschef/timeline
I wonder what that's like with UC...its sounds very good!

Conquer UC said...
Not wanting to rain on anyone's parade but Australia's healthcare system, while hugely discounted in terms of price, is not the best due to the serious drawback of taking so frigging long to approve meds.
We will be lucky if Entyvio gets approved in 5 years time. Most likely 10 yrs though.

Also, in terms of alternative medicine; You may want to try a clinic in Brisbane that does long distance skype consults, it is called barebonesmedicine clinic. The guy there is an actual medical doctor but he deals with treatment of chronic diseases and investigates infections as potential causes. As someone who tried doing this DIY and sent samples on my own to american labs: my advice is do Not do this whole infection as potential cause of UC on your own.
Do it with a professional will save you a lot of headache, especially with customs!
You may also want to try FMT (fecal transplant). Anecdotal evidence suggest that FMTs work best when inflammation is lowest. Usually wellbutrin is used. There is a thread here titled "counting success stories with FTs" check it out.

If i were you here is what i would do:
Try the nutritional supplements Maraudar suggested for 4-6 weeks (introduce one thing at a time every 5-7 days) if no improvemnt then get an apptmnt with another GI (better book in advance anyway) to see if he is open to entyvio importation. Check cost though first bc it can get quite expensive!
At the same time get an apptmnt with a GI that does FMTs. I only know ones that live in sydney or victoria, sorry i couldn't find anything in perth or WA.
If all the above does not work, try barebones medicine clinic. I put them last since all of the above has a more proven track record of healing/treating UC.

Hi and thank you for yr advice...most appreciated!
You are right about AUS taking soo long with med approvals, wonder this is so, I mean caution yes, but...
Yes I am and will continue to take Maraudars advice, I have an appointment tomorrow and will ask about the more potent Probiotic and script, also the cost of L-Glutamine.
I have booked in to see another GI, but appointment is 20th Aug and will definitely ask her about entyvio. Thanks and cheers ps, this new GI swears by Iberogast for UC and CD. I have my son on this - 20 drops x2 daily, seems to have made things a bit better

garylouisville said...
I think that at some time in the future, probably within our lifetimes, we will be able to get a stool test that will determine both an individualized recommended treatment plan and an idividualized recommended diet plan as well. That doesn't necessarily mean that it will be the cure though but it may go a long way in controlling our disease and maybe keeping it remission (for as long as possible).

I hope you are right in this, a lot still needs to be learned as we follow by the tried example of others. This is why I just love this forum, we can learn from each others wisdom

Marauder93 said...
Just an FYI, L-glutamine is actually pretty darn cheap; not like a bunch of the other supplements we have to take. Its a common supplement used by bodybuilders so it should be easy to find as well : )

Thank God for that...some good news for me, I am on a single income, I plan to check it out tomorrow