Frustrated mum of sufferer

[Stuarts Mum]

Hi All

Sorrry to have to look to the web for support and info, but Im sure you've all had these same frustrations at some time during/following diagnosis.

History: Son, now 20, has had a long history of problems starting when he was around 10. Ended with scopes which settled on a non specific IBS-and off you go
Anyway, fast forward to last year when he became very ill and hospitalised (eventually).
DX with Crohns and ulcerative colitis. Has been on methotrexate without much success and has been told not much more can be done.
Anyway, I had a very scared, tearful and and upset son on phone from his college saying he didnt want to die.
I was devastated to hear this from him and am now on a repeated campaign to get a solution to his problems. Ive read that maybe infliximab could be an option, so we are about to get an appt to seek a second opinion.
Further to this, he is very angry that his condition has escalated to where he is now and is talking about wanting to sue-Anyone had any succcess under similar circumstances?
Hope you are all in a good place right now
Take care
Cathie

 

[Tesscorm]

Hi Cathie,

I'm so sorry to hear that Stuart is having such a difficult time! He's obviously very frustrated and down and it must be heartbreaking for you to see him like this!

I don't have much experience with drugs, however, I do know that there are certainly more options than only methotrexate! OMG, I think it's ridiculous that your son was told nothing much more could be done!! :voodoo: You are absolutely right to get a second opinion! Please have a look under the treatment subforums to read up on the various treatment options.

My son, 17 years old, is on Enteral Nutrition. This is has been his only treatment since diagnosis in May. It's more commonly prescribed for children, however, there are many adult members on this site who have used it successfully. In children, it has a comparable success rate in achieving remission as steroids, have no side effects and provides necessary nutrition. My son's symptoms disappeared almost immediately (although he also had Flagyl for a week while in hospital). While he began to 'feel better' immediately (fever gone, nausea, etc.), within a month or so he was able to get back to playing hockey, exercising every day and had gained 30 pounds within 3 months (had lost 20 prior to diagnosis).

Please look in the Enteral Nutrition subforum (under Treatments) for more information!

This is a wonderful forum with many supportive, knowledgeable members - I'm sure you'll be hearing from many who are more knowledgeable than I about the various medical treatments.

Good luck! :ghug:

 

[Stuarts Mum]

A nice welcome !

Hi-and thanks so much for reading/replying.
Ive had a look at the section you suggested and it makes very interesting reading. Forewarned is forearmed as they say, so all good info to speak to docs with. Im just sorry I let Stuart deal with it on his own, so to speak, but hes so independant and I know its an embarressing topic for a young man,
Anyway, we are where we are, and Im definately gunning for a fight to get him the best care and attention out there!

Thanks again, I see this is a great site for support and info

Cathie

 

[Angrybird]

Hello Cathie and welcome to the forum. I can only agree that a 2nd opinion is required here, I cannot see why the curent doc has said that only MTX is an option, there are a fair few things that can be tried so please do check the above mentioned sub forums. Perhaps it is worth getting you son to also have a nosy around here as there is a lot of support available as well as all the really helpful info.

I hope you get to see a new doc soon and that he is better than the last one. Please keep us updated on how you get on.

xxx

 

[Tesscorm]

Its certainly difficult to know how much to do for 'older' children. :ybatty: It certainly is a fine line!

Feel free to ask lots of questions on the various subforums! I'm sure you'll find tons of info here!

Let us know when you get that second opinion booked! :ghug:

 

[DustyKat]

Hi Cathie and :welcome:

First up...:hug: How heartbreaking for you to hear your son in such despair and how awful for him to feel that this is as good as it gets!

I agree wholeheartedly with what everyone else has said. Metotrexate is but one drug in one class of drugs used to treat IBD. To be honest I don't know that it is very often used as a first line of treatment, I would hazard a guess and say that the other immunosuppressives, Azathioprine & 6MP, normally are. Were they excluded do you know? Perhaps because he lacked the enzyme to help break them down?

So your son has both IBD's or is it Crohn's Colitis he has. I'm sorry, I'm not doubting what you are saying just curious.

You have certainly made the right decision to seek further opinions. The doc you have now sounds like a real :quack: and the greater distance you put between he and your son the better!

Oh Cathie, I know how hard it is to have to let them deal with this on their own. My daughter is also 20 and she moved away to university 2 years ago. She too is fiercely independent, she is in remission and had a longer diagnosis time than your son has but he will get there hun. I think the thing now is to stress to him that there is so much more out there to help him and to get him into remission. Tell him things will get better and he will be okay. You are doing a fab job Mum, he cried out for help and you were there in a heartbeat, that is as it should be.

Good luck! It does and will get better!

Dusty. xxx