Crohn's and supplements

[vonim]

Hi Everyone

My son was diagnosed recently with crohn's after three years of tests and severe pain on his part. He is in denial and hates going to the doctor. I have managed to get an appointment where I will be going with him to put his point across (he feels the doctor's do not listen to him because he is only 21) His weight has plummeted dramatically and I think he needs to take supplements, any ideas on what to buy......... we have done some research and is enshake (like ensure but without fibre) the right way to go?

Can I also say a big thank you to everyone's contibution, it helps knowing people are here to listen and support. Thank you to Dusty too.........

 

[sam1]

Hi Vonim,

My son is 21 and has been diagnosed with crohns a couple of years ago, took bout a year to get diagnosed! He is hoping to start humeria soon, what mediation is your son taking? I am praying that he gets on ok with humeria as his lifes been on hold for last couple years! Cant help you with the supplements as my son hasnt lost any weight, he does take folic acid as his consultant said he was lacking in folic acid, i always go to his appointments as he also feels like they dont listen to him! Hope your son gets better soon x

 

[vonim]

Hi sam1

Thank you for messaging me! My son is in complete denial, and refuses to take his folic acid and at present looks like a walking skeleton........... he has totally lost his apetite and has developed a really bad relationship with food. His meds change often but is currently on asacol (lol, I know it's not funny, but thy really should have come up with a better name !!)....... my spelling is pants please excuse it lol xx hope your son is feeling well at the moment voni xx

 

[Manzyb]

B-12 injections are often helpful with fatigue. Depending on test results, he may need iron too. I would ask his doctor when you guys go next to see about those two. Many people with Crohn's need either one or both of these!

I really hope your son gets some relief soon. It is really hard to deal with the disease at such a young age.

 

[sam1]

Sorry to hear that, my son says hes ok til he eats then gets bad pains, i have ulcerative colitis and i have taken asacols for bout 20 years and havnt had a flare up for years, so hope your son gets on well with them, wish my son could take them the consultant says that they dont work when crohns is the terminal ileum! hes tried azathiorprine and 6mp but couldnt get on with them as his liver results went crazy! x

 

[Angrybird]

Hello and welcome :bigwave: When you see the doc ask that ALL vitamin levels are checked, it is common for us crohnies to be deficient in B12 and D and because of the nature of where this diseaseis we have issues with malabsorbtion. For now perhaps ask a pharmacist on what could help in the meantime based on this diagnosis with regards to over the counter stuff. Is your son on any meds at the moment or have the docs kind of left him hanging in the wind? What symptoms does he have at the moment? When is the appt booked for? Not sure what shakes you can get yourself but again ask the doc about whether something like Modulen may help (manufacturered by Nestle)you have to mix these up but there are different flavours to chose from and if chilled when drank they actually taste quite nice, this may have to be sorted by a dietician though on prescription. Let us know how you get on :hug:

NB I am pleased you are already finding that the forum is being a benifit to you.

 

[Emily]

I think Angrybird is right, you should have everything checked, B12 no question, Iron, Vitamin D...the whole works. Maybe you could switch docs if he feels his GI isn't listening? 21 is certainly an age at which a doctor must take you seriously as an adult. I'm 19 and my doc has always shown me full respect, especially when I go to appointments alone. It sounds like his Crohn's really needs management. Is he on any meds?

I was in denial about my disease because I hated my doc and hated feeling sick...So I didn't take any medication and had to have surgery because of my own denial. Please try to get him to a GI that he feels comfortable with and will listen to! And good for you for being proactive! My parents let me be in denial to make me happy...and it did make me happy, but it was no good in the end. So keep pushing!

 

[IJP]

I was once the walking skeleton 21 year old son ... to be honest I wasn't really bothered how I seemed phyically to other people, it is only looking back now (early thirties) that I realise how this upset other people at the time. Especially my family. I was so worried about life, careers, what to do next I ignored some/most of the advice given to me. Hey young men always think they know best. I didn't really have much appetite so only wanted to eat small portions. It worked out eventually - so don't be too concerned. I am still not Arnold Schwarzenegger. The support and understanding, with the necessary space was all I needed, although of course I didn't show it all the time. I also had the experience of my doctor talking to my mum instead of me, but going alone sorted that!

Good luck - it will get easier for everyone (you and him).

 

[xJillx]

Hi and welcome! You should bop over the the Enteral Nutrition subforum. This treatment plan has a high remission induction rate with little to no side effects. Of course, many struggle with not eating solid food, but if the disease is bad enough, I am sure the benefits greatly outweigh this.

I sure hope your son feels better soon!

 

[David]

What first needs to be determined is WHY your son isn't taking what he needs to take? WHY is he not taking his folate for example? Does it cause some sort of side effect? Does he not understand why he needs to take it? Is he not organized enough to remember to take it? Or some other reason? Because if he is deficient in folate, it is absolutely imperative that he does take it. As such, the root cause of his not taking it must be determined and remedied.

When you speak of utilizing ensure, that means you're thinking of the elemental/enteral nutrition route. I'd suggest reading everything in this forum to help determine if that's a good way for your son to head (my guess is yes).

As for the various vitamins and minerals out there, the best bet is to get tested regularly for them so baseline levels can be determined and proper dosing can be figured out. The vitamins and minerals Crohnies are most deficient in are iron, vitamin B12, Vitamin D and folate. Depending on symptoms, medications, and location of disease, all the other fat solubles (A, E, K), then magnesium, potassium, and calcium should be monitored as well. Crohnies are also so very often not getting anywhere enough protein which is likely happening with your son.