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Crohn's Disease
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Posted 1/30/2010 11:30 PM (GMT 0)

Hi there,

It's nice to find somewhere for 'chat'.

I knew of someone who had crohn's, didn't know too much about it and to be honest just thought people with it had an upset tummy-looking back now I cannot believe that is all I thought it was, talk about ignorant.

 My 16 year old son was diagnosed November 09. I fully believe that he has had it for many years but the GP put his pain down to heartburn and despite another consultation we had with him regarding son's height and weight he still fobbed us off (told me that I wasn't exactly that tall myself 5' 9")mad

Anyway eventually went back and I wasn't going to leave until we had a referral(which needless to say we did getsmile )

From that point things have moved pretty swiftly and I have confidence in the consultant. Son had a colonoscopy (with biopsies) and barium follow through x-ray. Was put on pentasa and anti-biotics x 2. Has just spent 7 weeks on the liquid energy food replacement drinks, managed to gain just under 3 lb, not brilliant but it is a start. Now at the stage of re-introducing food. He has been put on entocort for three weeks whilst we do this and then he is moving on to one of the immunosupressants(sp ?) subject to blood test results. Have been told that he will need weekly blood tests on this drug and will also need the B12 jabs on regular basis.

Son is ok, quite matter of fact about. I just feel like I am constantly giving him tablets, both before and after he eats as well as trying to get him to eat, drink, take his energy drinks etc and tbh  I just wish that I could have it instead of him

I feel like we have been put on an emotional rollercoaster and I would like to get off now please!!

Needless to say I am reading anything and everything that I can get my hands on-there is so much to take it. Quite interested in theories regarding different foods/milk etc but at this stage son does not want to give up certain foods that he likes-maybe time will alter his opinion or maybe during food re-introduction something will trigger a reaction  and he wil be put off of that food by it. I guess in a perfect world he would have no more problems ever (I know-pigs fly!!)

Anyway it has been good to let it out, thanks for listening

Posted 1/31/2010 4:57 AM (GMT 0)
I was diagnosed with Crohn's in April 2009, I also have chronic Graves Disease, Orbital Graves And Arthritis from my Crohn's. My thyroid issues are under control, however, my GI doctor didn't put me on any oral meds, he insisted I go on Remicade infusions.. It was either that or Humira injections. Both of them are VERY expensive unless you have awesome insurance. My insurance only pays 80% so I went to Patient Access Network and apllied for a Grant from their foundation. After much paper work from myself anf my doctor, I was granted a $4000.00 Annual Grant. Without their help I would have never been able to have my infusions. I go every 8 weeks and get my infusions and I'm doing great. It has been quite awhile since I've had a flare up. On the down side of my Crohn's, I have developed Peripheral Arthritis which they say 1 out of every 5 Crohn's patients developes. I go to my GI Doc Tuesday!!! Thank Goodness, cause it's painful! You may want to talk to the doc about Remicade. For me personally I would rather take Infusions that last three hours every 8 weeks, than take a bunch of pills dailey. I realize everyone is different, so maybe this might not be your sons course, but it never hurts to ask? Oh and about foods, whenever I have a trigger food that send me running for cover, I make a mental note and stay away from them in the future. Why shot yourself in your own foot?
Posted 1/31/2010 6:30 AM (GMT 0)
Vixen, are they giving your son allergy / sensitivity testing as he reintroduces new foods? It seems like a good time to do it...

Are you in the UK?
Posted 1/31/2010 9:29 AM (GMT 0)

 Thank you for your repliessmile

Ivy 6, yes we are in the UK but that is one thing they haven't done. Funnily enough it was something that crossed my mind and it is something that I would quite happily pay for privately(and have found an established company that provides this service) However at this moment in time my son would not give up the foods he likes (maybe when he is a bit older and wisersmilewinkgrin ) We may get a slight indication as the foods are being reintroduced in stages over 3 weeks (next stage is bread, pasta, biscuits etc and then the dairy group) He is such a fussy eater (doesn't really eat fruit/veg or dairy) and is quite delighted that he has been told to stay off of the veg for now!

Harley Behavin,

In the UK we have the National Health Service, so paying for treatment isn't such a big deal although I think it is fair to say that sometimes in some areas it is extremely difficult to get the more expensive treatments. Son is still at school right now so all medicines are free, however once he finishes at school we/he will have to pay for prescriptions (medical note authorising medication). I will have to look up the information on these infusions (I am on a rapid learning curve here) I guess as well it would depend on  individual symptoms-my son never had the diahorrea (infact quite the opposite) for him it was  the pain that had him doubled over and the fact that he could only eat one or two mouthfuls of a meal. His consultant still seems amazed that he doesn't have any joint pains (yet !)I totally agree with you about food triggers- I guess at the moment because he has been off of proper food for sometime he isn't going to let anything stop him with this re-introduction process.

Still not sure about him going onto these immunosuppressants though (will have to interrogate the consultant some more) He does seem to be constantly thinking about my son's age though and consequences of medication/treatments. He took the colonscopy route because less risk than the barium x-ray, then had to do the x-ray because he could only get so far during the colonoscopy. Wanted to try the liquid food drinks instead of the steroids as  children with 'right sided ' crohns have been shown to go into remission with this treatment etc etc and now to go onto the immunosuppressants as opposed to long term steroids.

February we have appointments with both consultant and dietician so watch this space !

Posted 1/31/2010 2:33 PM (GMT 0)
Hi Vixen,

And welcome to HW. I think that you should go with the Imuran/6mp route before going to the big guns. Alot of folks have been able to reach remission with these meds and some have been able to stay on these meds for up to 10 years. As far as diet goes it is pretty individual. I personally follow a low residue diet and that works well for me. There is also the SCD diet that some follow, though I think you would have a pretty tough time with your son to do this diet as it is very restrictive, especially since he is a picky eater. I eat alot of chicken, fish and turkey, and those seem to agree with me. I hope as he reintroduces foods he does well and gets feeling better soon. My biggest tip to you that I have learned with my 35 years with this disease is to ALWAYS have him on some type of maintainence med. You should not stop meds just because you are feeling better. Crohns is a chronic and incurable bowel disease and must be treated always with meds and diet.

Good luck,
Gail*Nanners*
Posted 1/31/2010 7:04 PM (GMT 0)
Hi Gail,
You are right and I certainly wouldn't just stop meds unfortunately I don't think the energy drinks have put him into remission as this afternoon he felt what he usually feels before the pain-fortunately the pain didn't follow but I'm not holding my breath. He also went down with migraine, don't actually think we have mentioned migraines to consultant-will have to add it to my ever growing list.
I have looked up info on the SCD diet and I just don't think he would be able to do it at this time, maybe one day.
Posted 1/31/2010 10:08 PM (GMT 0)
That's unfortunate about the drinks. They do work for a lot of youngsters, but there are some of us (I'm another one!) that didn't respond to that sort of therapy.

It's still important that he tried it, though, as it will encourage your doctor to try some different therapies, and give him a better idea - now and into the future - of what will work for your son, and what won't.

We do have a few British youngsters on this forum who were given allergy testing, as a matter of course, at the end of their Modulen therapy, so I'm a little surprised that hasn't been offered to your son. Perhaps this would be worth discussing with your doctor.

All the best to you both,

Ivy.
Posted 1/31/2010 10:52 PM (GMT 0)
Hi vixen! Welcome to the forum!

If you read my bio below, you will see that I also have a son with Crohn's. He was diagnosed in '07, shortly after his 15th birthday. After prednisone and Asacol to get things under control, we started the Maker's Diet and eventually began using SCD recipes, too (the diets are similar). This has worked EXTREMELY well for my son. So well in fact, that after only one year, his pediatric GI told us he could discontinue his medication. (I'm in no way promoting this for everyone, but just pointing out that some people are able to manage CD with diet alone. The yahoo SCD groups are a testament to this.) Perhaps if your son learns of the literally thousands upon thousands of people out there who successfully follow this diet he would be more likely to consider it?.....

.....oh, and our whole family follows the diet. We really don't consider it restrictive. It's just DIFFERENT. Breaking the sugar addiction was probably the toughest part...

I feel for you and remember the emotional roller coaster we were on for months before, during and after his diagnosis. Please know you are not alone! I hope you find this to be a very supportive place!
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