Recently diagnosed

[Sickofit]

My son (14 yrs old) was just recently diagnosed with Crohn's disease and I find it very disturbing that nobody seems to know what causes it or how to treat it. From what I have read on the subject, all the treatments just seem to address the symptoms without dealing with the problem. While this may be good (makes him feel better), I am concerned that the problem will not go away and, like many forum posts here, he is destined to a life of misery and jumping from one medication to another with no true relief in sight.

If this a reasonable assumption/conclusion? Does anyone have a clue as to what causes this or what drugs are available to treat the disease rather than just trying to make him feel better? I am discouraged by what I am reading.

Thanx

 

[Nica]

Hi,
Welcome to the forums. I feel for your son. Crohn's is not easy.
From everything I know about Crohn's it is an auto-immune disease, so your body is attacking itself. Why it does that no one is totally sure.

The goal of treatment is to reduce inflammation, slowing the progress of the disease and easing symptoms. Many people go into years of remission with this, others do not. Hopefully your son is one that does, yes he will most likely need meds for the rest of his life, but he can have a full and meaningful life with Crohn's.

As far as the drugs you have

Asacol/Pentasa they both work the same way aside from where they are delivered in the system. I am not sure how they work as they never have for me.

Prednisone very useful in stopping inflammation. It can stop a flare up in its tracks, getting off it is the problem without the flare coming back. Lots of side effects with long term use.

Dmards or immuno-suppressants (Methotrexate, Imuran, 6mp) These turn off the immune system so it stops attacking itself. Some have been used in chemo

Biologics (Remicade, Humira and Cimzia) These are TNF blockers.

Some people use a combination of these drugs to get crohn's into check, others need very little.

Crohns is a very strange disease as we all do not have the same symptoms and the disease responds differently to meds for many people. We all have different triggers. So it will come down to how bad your sons crohn's is and how he responds to different treatments.

 

[crazycanuck]

Oh no! Please please dont think crohns is his death sentence. I am a 19 year old male and have had Crohns since I was 16 (with symptoms since 13). I know this is all so overwhelming right now but most with Crohns live very happy and very normal lives. Of course there will be medication hopping unless you get lucky but thats all norma. Meds dont just treat symptoms they prevent those symptoms from happening. That being said no Crohns isnt cureable but as your son is only 14 he will have access to the newest meds as they come out (2 new ones just approved in last 5 years). Please ask all the questions you can here we are all here to help. And if you need an example I am a 19 year old guy who finished high school, in university, and still play competitive hockey with Crohns. It is possible and he will be ok. Good luck with it all and dont freak yourself out with everything you read.

 

[Sickofit]

From my reading, the auto-immune theory seems to have been dismissed a long time ago and is no longer considered a viable theory of the cause.

I read an article by B. Sartor who I think is the medical advisor for CCFA suggesting that the current theory is that there is a disturbance in the bacterial balance in the gut (i think he called it dysbiosis) and that, in combination with a genetic defect in patients, caused them to abnormally react to the normal bacteria in the gut.

If that is true, why are all the medications being used are the same ones that were used when they thought it was an autoimmune disease? It would just make sense to me that the opposite would be more effective ??

Just curious

 

[Nica]

From the CCFA website

"Both illnesses do have one strong feature in common. They are marked by an abnormal response by the body's immune system. The immune system is composed of various cells and proteins. Normally, these protect the body from infection. In people with Crohn's disease, however, the immune system reacts inappropriately. Researchers believe that the immune system mistakes microbes, such as bacteria that is normally found in the intestines, for foreign or invading substances, and launches an attack. In the process, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury. When this happens, the patient experiences the symptoms of IBD."

Basically they are not sure what makes our immune systems freak out, an abnormal bacteria is a theory. 8 years ago they tried giving people with crohn's worms in gatorade to induce remission it has come a long way.

 

[crazycanuck]

Haha worms... Now im getting modified mice protien an dna injected... Hahaha. They are still developing the true theory as to why this starts but wihtout that theory you cannot find a cure or find a cause. Not to worry Im headed to remission with my drugs as are many others already which means something must be workong right. Hang in there and good luck with finsing the right drug.

 

[Nica]

Crazy,
let me know if you get cheese cravings on remi? I did ... I think it was a LONG time ago

 

[Sickofit]

Seems to me "remission" is a temporary "fix" and not a cure. It seems to me that the focus is on remission

 

[STLGirl]

Hi Sickofit and welcome.

When their isn't a cure, then remission is the next best "fix" even if it is temporary !!

 

[peterh88]

Hi sickofit, Everyone here is right when they say nobody knows what causes crohns. The meds everyone take only treat the symptoms and not the cause of the disease. I have put up with 15 years of different drugs only to find I would eventually flare again. My suggestion would be to use the meds your doctor prescribes for your son but please please do some research and think outside of the square. It took me 15 years to think outside of the square and get out of the vicious cycle of flare ups, take drugs, flare ups and take even more drugs.
Check out the following books and films for some information that might be helpful to your son.
Books
"Life without Bread"
"Breaking the vicious cycle"
Movie
"Food Matters"
Lots of ideas that may help.
Lots of ideas that certainly wont hurt you.

p.m. if you want some more info

Cheers

Peter :goodluck:

 

[Nica]

The only treatment out there that looks like a "cure" is stem cell transplant. Thats way too new to tell if it truly is a cure or remission. Plus you would have to be super sick to even try it. (there is a thread here by someone who went through it)

It's a hard disease to manage. Sometimes it feels like it is always lurking around the corner. But, that does not mean you can't have a good life with it. Most people with crohn's have times of flare and then many years without any symptoms.

I feel for your son. It is truly very very difficult and to be a teenager with it seems almost impossible to me.( I was in my 20ies when I got it).

Even with all the medicine I have tried, all the pain and suffering I still have a good life. You learn to take advantage of the good times. Laugh when you might cry.

 

[StarGirrrrl]

Hi sickoffit, I apprecaite your feeling but even in these modern times there are few illness cures out there. With IBD we are lucky there are so many treatments to try that work. For IBS, a lesser illness, they are few and far between.

 

[Lisa]

Right now the main concentration is on remission - as a cure has not (yet) been found.....

As for living a full life, I was diagnosed when I was about 7 years old, am almost 40 now (eek!).....I do any and everything I want to - was a firefighter, EMT, work with horses (still own 3), work full time, travel, have a family etc etc.....

Are there things that concern me? Yes.....like if/when teh Remicade may stop...but I dont' let it rule my life, I am going to do everything and anything I want for as long as I can.....and take care of myself in the meantime...which is something I did NOT do for a long time when I was in my 20's and in denial.....

 

[jmdon]

So, as a new member, with a 22 year old daughter who is being tested for Chrones at the moment, and trying not to panic, I have a couple of questions:
1) Is there any truth to the thought process that says people who eat vegetarian diets can reverse/cure/positively affect chrones
2) Are there natural/herbal/natureopathic choices verses pharmaceutical medications with what sounds like a ton of scary and harmful side affects
3) she just had her barium enema, and has the other barium test soon. hasn't yet received the results from the enema. Is there anyone out there from the maritimes with recommendations that pertain directly to the maritime provinces (nova scotia in particular) as far as treatments, specialists, etc.
Thanks so much! sorry this is so long!

 

[Nica]

Hi Jmdon,
For me personally veggies mess me up really really bad. Anything with fiber does. I have tried some alternative treatments and diets with no results. I am sure they work on some level for some people, but my personal experience has been less than stellar with them.

There are some natural meds that can help with crohns, I am not sure if its treating the underlying disease or the symptoms. I have done some herbal therapies with some success, but the disease was always still there.

Sorry I know nothing about Nova Scotia, you might want to look at the CCFA website under physician search to find a doc who deals with IBD.

Good Luck to your daughter, and you as well.

 

[crazycanuck]

Haha no cheese but I was glued to the tv when mickey mouse cartoons were on the other day...

On a serious note, sickofit i wont lie its a scary disease of course. At the begining I remember crying in my hospital bed at 16 thinking life was over. Ive lost out on many opportunities my friends have had for sure. But if I could go back and someone could say they could give me life without Crohns Im not sure it would be an instant yes. Crohns is a part of me and now your son and it will come to be a part of who he is. he will almost undoubtedly be a much more responsible, mature, and humble person because he needs to be to deal with it. Remission at this point is our "cure" and what (i think) most of us strive to enter and mantain. The drugs and their side effects can be scary sure, but if those drugs keep your son in some extra classes or to enjoy life and feel like he belongs in school then they may just be worth it after all.

Edit: welcome jmdom. I will also say some veggies sed me running too although others Im fine with. Diet is a very controversial topic with Crohns, some people on here will swear by certain diets that work for them and while all 3 doctors I talk to about crohns say diet doesnt affect it. I do think it does but everyone is different and you kind of have to find what works for you.

 

[STLGirl]

Well said Crazycanuck. Speaking as a mother of a 20 year old son, I'm so proud of you for the way you are handling your Crohn's and your attitude. I'm also proud of you for speaking to others in this forum. You have such patience and understanding and that says a lot for a 19 year old.

I just had to let you know my thoughts this morning .
Have a super day now.

 

[Sickofit]

ibid STLGirl...

From what I can read and understand with all the differences between people in terms of their symptoms, medications that work, diet, etc., Is Crohn's disease really a single disease or a bunch of different nes lumped together? Almost sounds like the latter!

 

[Nica]

I have wondered if it was a bunch of diseases grouped together many times.

 

[STLGirl]

First I want to say I'm new to Crohn's and trying to figure it all out, like yourself Sickofit! In my opinion from what I have read, I think diet has to do with where your Crohn's is located. Example: for me my bad area is in the Sigmoid area (the end) and so I can eat anything I want and nothing bothers me because the food has already been processed when it reaches my "bad area". But others that may have Crohn's in their small intestine or a bit lower may have to restrict their diet due to that being the area where it gets processed.

I just learned from reading in this forum that other people have joint pain and arthritis (before medication) and I too have had and still do suffer from arthritis and joint pain. I just thought my knee was bad due to sports injures and knee surgery when I was in my 20's but I couldn't explain all the other aches and pains. NOW I KNOW!! I have some other issues I'm dealing with and now I'm wondering if they are due to the Crohn's. How long have I had this stupid disease anyway and had no idea?

So yes, I think it is one disease maybe causing habic to other parts of our bodies. Just the way I see it now at this point! But who knows!

 

[Belle]

Does PENTASA cause PURPLE URINE?

Hi,

My husband was recently diagnosed (his antibody count in his blood work indicated likelihood of Crohn's).

He's been taking Pentasa for over a month now and all our toilet bowls having remnant stains (upon drying) are purple! Is anyone experiencing this too??

Thanks,

Belle

 

[crazycanuck]

Haha oh boy colours... Ive had all kinds of shades in mine. Ive had green purple bluey orange yellow and well brown haha. All those 'colours' were really just very very dark shades of them and nearly black but it is something to ask your GI about just incase.