Aunt helping out my nephew with Crohn's

[eap35770]

:sign0085:Hi my nephew has been dealing with Crohn's symptom's for the last 5 years --without really ever having the proper test to determine if that is indeed what he really has, he is 26 and about every couple of months he has a flare up and is in and out of the hospital and as we speak is consequently in the hosp now with yet another flare up, he had bells palsy this past summer which we r now learning is also a part or issue that can be a Crohn's symptom. I just got off the phone with the Doctor and he is going to start him on medication to hopefully help with the flare ups before considering surgery as surgery is a last option since removing the bad colon --will be a temp help, since disease can return. I was hoping to get some incite on Diet, how well meds work, what meds work better, how expensive r the meds, he has no Ins and as we all r already struggling with a wife and 3 kids. I am hoping to really educate him on this and am very excited for your forum as I will educate myself first then teach him hopefully without scaring him to death with how serious this really is and can be, any help is greatly needed so that I can better understand just how to express this without going over board if that makes since. Thank you he has talked all day about being scared about what is going on and that the Doc first mentioned he was going to remove 1/2 his colon 2 days ago thinking it was diverticulitis -- but today the Doctor again decided meds will be best first --Help any thoughts

 

[Loriebird]

It's definitely possible to get by without surgery - I did it for years... but it may not be the quickest route. I tried to be conservative and refused to have surgery, and that ended very badly for me. I ended up suffering a lot longer than I needed to when surgery may have relieved my pain much quicker. I've been suffering for almost two years now and will be having surgery anyway in December. I deeply regret not having surgery when my doctor first advised it - my disease has progressed more than it would otherwise would have, and I have developed avoidable complications as result. I have friends who have had surgery and have been in remission for years. The ideal goal.. is to remove the diseased intestine and then start you on a treatment program to keep the crohn's in remission. But 1/2 of the colon sounds very dramatic.. I can understand wanting to try other things first. You never really know what this disease will do - it could very well be that if I had surgery 2 years ago, I'd be on my second surgery now instead of my first. Just make sure that you go over all the options with his doctor and that the doctor approves of your plan.

If it helps, I was able to bring my crohn's into remission without surgery with remicade. There are other treatments out there that may bring the crohn's into remission. The hospital I went to put me on a liquid diet (which relieved my pain) and IV antibiotics. After 6 months of IV antibiotics, I started remicade. But none of these things were cheap. Remicade is crazy expensive, and I was going to the doctor on average 3-4 times weekly for about 6 months. 6mp is about $80 without insurance monthly (with a no insurance discount) and takes over a year before it really starts working. Remicade is about $4000 per treatment, and I am currently getting it every 8 weeks. It's pretty expensive =\

I know that diet is a significant factor for a lot of people. If he doesn't know what hurts, he may just start with a very bland diet and slowly work his way around the food pyramid. When I was in my worse relapse, I started out eating one thing that I knew was safe and gradually introduced new foods one at a time on a weekly basis so I would know what was hurting me. I eat almost the same thing everyday because I know it's safe.

PS - the greatest factor for me has always been stress. It may be helpful to him to learn some relaxation techniques. My Crohn's got dramatically worse in law school, and I have gone to the ER consistently every semester in the weeks before finals. During the summer months, I feel great. It's amazing how much better my disease (and life) is without the stress.

Eating better and relaxing more is usually not a bad thing.. I would start there

 

[eap35770]

Thank you so much for your advice -- the Doctor said he will remain in the hospital for probably 7 days with liquid food and meds to get the white count under control 20.000 right now and from there meds -- keeping in account no Ins for meds but I was afraid the cost was going to be out of this world - we will just pray we can get the proper meds and get this into remission and thank you for the advice on food, he loves hot spicy food and I guess that is going to have to change he is already losing weight and sick every time he eats, wow going to be a long road -- thank god for this site and people like you willing to help out -- hugs

 

[David]

Greetings,

Your nephew is lucky to have such an amazing aunt

You mentioned he has never had the necessary tests to determine that it is indeed Crohn's Disease? Has he never had a colonoscopy? Has he had various blood tests that can help with an IBD diagnosis as well? Is he under the care of a GI doctor?

All my best to you and your nephew

 

[Loriebird]

Aw, Eap. You are such a sweetheart. I hope your nephew is back on his feet soon. I know how it feels to be worried about money. Please check back with us and let us know how he is doing.

 

[xJillx]

Hi and welcome! I am sorry to hear about your nephew's struggles. What testing has he had done? As David suggested, a colonoscopy with biopsies is the best route to go to get a diagnosis. However, if his GI wants to start treatment, he is most likely very confident he does in fact have Crohn's.

Do you know what type of medicine he is going to start trying first? There are several types of treatment option. Most start taking a 5 ASA, which is an anti inflammatory. These have little side effects It sounds like most of his issues is in his colon, so Lialda would be a good option. Lialda is a delayed release tablet meant to target the colon. Other treatment options are 6mp and the biologics. Both suppress the immune-system to prevent inflammation. By suppressing the immune-system, there are some rare but concerning side effects. I highly suggest checking out the Treatment forum to learn more.

I sure hope that with whatever treatment option your nephew starts taking, it does the trick and has him feeling better soon!