How will they cope with many years of Crohn's?

[LilyRose]

I guess I'm wondering how our kids are going to get through so many years with Crohn's, when they start so young?

I was looking at an article in the 'Valuable Resources' sticky at the top of this page, and it had an article about on average what time people are in remission in their lifetime etc. Which is kind of what I'm been wondering.

I know there is a big variation in severity in IBD and also repsonses to medications. So everyone's experience of Crohn's is different.

I suppose what I'm wondering is how my son will get through 70 or so years with this disease? It seems that some drugs can only be used for certain amounts of time:

Steroids - minimum time possible

I read methotrexate is only used for a max of a couple of years

Biologics some people have problems with adverse reactions/losing efficacy, I haven't read that people use them really long term ie 10 years plus

EN - exclusive EN could only be tolerated for so long, but EN along with normal food I imagne could be used long term

Azathioprine - seeems to be used more long term but I don't really know how long.

And ofcourse surgery is another option which might induce remission for a while.

So I wonder if he will run out of treament options and how he is going to manage with so many years ahead. Sorry that sounds so depressing doesn't it!! I'm not actually down in the dumps, my son is pretty good right now, I guess I'm thinking about what the future holds.

Thanks,
LilyRose

 

[Jennifer]

Hi LilyRose! I was diagnosed when I was 9 and honestly it just became part of my life. I don't know what life would be like without it. Remission is always possible by many different means as you mentioned so really the hardest part is the mental aspect, acceptance.

At first you simply live with it and deal with it but you really haven't gone through the healing process. That comes later with experience of hardship and a better understanding of life in general. I don't think I fully accepted the disease until my mid 20's but every now and then I still have dark moments of the "why me" even now that I'm 30.

We manage by continuing treatment, no matter what it is. Some just take meds, others have a resection (maybe more than once+) and some may have a bag (which is a whole different life) and some may do all of the above. We grow up just like everyone else and learn everything that every other person does except a little extra.

We learn how to manage our disease by ourselves after watching our parents care for us which means learning our symptoms, about doctors, about insurance etc etc. People do it all the time when they're older, we just do it sooner and you as a parent, are our guide.

 

[upsetmom]

I worry also but hopefully they find a cure soon.

 

[KWalker]

I was diagnosed when I was 2 years old. I'm now 22 so for me its just part of my everyday life. You just get used to knowing what you need and the differences it will make in your life.

 

[crohnsinct]

Yes a cure! And if you are worried about running out of drug choices I wouldn't. The pharma companies are always coming out with the latest and greatest...ten years ago who knew the biologics would be here....

 

[Tesscorm]

I've wondered the same thing... when you start young, where will you be in treatment options 15, 20, 30 years down the road??? But, Crohnsinct is right... we're not at the end of the road as far as treatment options. There's lots of ongoing research and trials in all stages, from ideas simply being considered today to drugs already in Phase III trials. Stephen's GI just mentioned that they (their hospital) only began using the biologics in the 2000s, what did they do in the 80s and 90s? If you're interested, periodically look in the Books, Research, News subforum - I often see members posting news items about new drugs, treatments, etc.

http://www.crohnsforum.com/forumdisplay.php?f=29

 

[Clash]

I also wonder about this as C's cousin(not blood related) has a severe case and has suffered greatly, she hasn't been able to carry out a normal life since dx as a junior in college. Her case seems to be extreme as they have found no med or combo of meds that will work for her. This has resulted I'm several surgeries. She is such a light, through it all she has remained bubbly and refuses to let her condition bring other people down. She is struggling right now but I have to believe this last surgery will bring her some much needed relief!
I agree with crohnsinct there are meds in the pipeline and ongoing research whos to say one of the studies stumble onto the all important puzzle piece. It wasn't so long ago that the medical community believed ulcers were caused by stress now we know the majority is h. Pylori induced. I know CD is likely more intricate and complicated but here's to hoping!

 

[LaHarmon]

A postive note: crohn's research has doubled in the last year and it shows signs of continuing to do so! I hope and pray they will find a cure for this disease sometime in my lifetime!
Loni
Diagnosed 02/05 at 16.

 

[DustyKat]

Agreed on all of the above!

Surprisingly this is something I haven't thought too much about!

Seriously though perhaps one of the reasons is even in the relatively short time Sarah has had the disease I have seen the introduction of new treatments and advancements made in research. I have seen Sarah become so very in tune with her body and develop an acute sense of what is something to dismiss and what is something that may need further attention.

I do not know if there will be a cure in their lifetime, obviously I hope more than anything that there is. I think one of the most exciting treatments at present is Stem Cell Transplants, who knows what direction they will take us in.

The internet is an invaluable resource that I think has even made a difference to a patients prognosis. The ability to share knowledge, brain storm, provide support and give sufferers and carers alike the confidence to question and advocate. It makes professionals sit up and take notice and in some cases for them to become more compassionate toward that person sitting on the other side of the table or lying in that bed.

All these things combined...new treatments, research, the sharing of knowledge, the ability to advocate...plus the role of diet and supplements, improved testing and the willingness of those with IBD to participate in clinical trials...in my mind make me feel that my children will indeed lead long and productive lives.

Dusty. xxx

 

[columbuscrohns]

I became ill at 24 and now I'm 52. All they had then were steroids, flagyl, and some 5-ASA compounds. After 15 years of very serious illness I had a permanent ileostomy. I've been in remission ever since. Before my ileostomy, Crohn's controlled my life and the suffering was unbearable. The ileostomy gave me back my life. It took a couple of months to make it just part of my grooming routine - wash face, brush teeth, empty pouch ...

My son was diagnosed at 11 and is now 18. He's been on Remicade for 7 years and it's still keeping him under good control, though not in remission. Our kids are strong and amazingly resilient. They have more options now than I did, but still not enough. However, there's a lot in the pipeline that we should start to see in the next 5 years.

So try not to dwell too much on the future. Take it one day at a time and support research however you can.

 

[LilyRose]

THANK YOU!

What amazing words from everyone. Thank you all for your thoughts.

I was really inspired. I hadn't thought about how research is constantly improving knowledge of the diseae, how best to use the current drugs, developing new drugs and possible a cure.

You are right - I should concentrate on looking ahead positively, and encourage my son to do the same as he grows up.

Thank you again. I always find this forum such a support and comfort.

LilyRose