Husband has crohns and we are lost

[SavvyH87]

Hi,
My name is Savannah and my husband was diagnosed with crohns disease 2 yrs ago. He is 27 and every since his diagnosis it seems he has been in the hospital every 2- 3 months with a flare up. They get so bad that he cant eat and each time loses at least 20 lbs. His doctor is of course impossible to get in touch with until we are actually in the hospital. Right now all they have him on is Remicade (spelling?), he gets it through an IV every 6-8 weeks depending on his flare ups. They have tried him on three daily pills and everyone seemed to make his symptoms worse so after a few days he stopped taking them and immediately felt better. He used to smoke cigarettes, but has stopped and now will smoke a black and mild that last a few days, which i think is better but I'm not really sure. At this point we are trying to get him a new doctor and hopefully some kind of treatment plan because it just seems wrong that nothing is being done to help with this daily. We haven't made any major changes to his diet and have only found Pizza Hut pizza to set off his crohns so we completely stay away from that. He also has constant hemorrhoids that never seem to go away. We just feel completely lost and don't know what to do. I fear every hospitalization puts his job on the line. Is it always gonna be this bad? Will he always feel sick all the time? Is there anything we can do to help with his crohns concerning his diet? His doctor cant seem to answer these questions and we just need a little help.

 

[my little penguin]

Remicade is a very strong drug .
Its a biologic and at the top of the line of drugs.
It is suppose to be given every 6-8 weeks
But can be given as much as every 4 weeks at 10 mg/kg.
The dose and frequency can be changed as well as adding immunosuppresants such as methotrexate or 6-mp to boost the remicade.
Methrotrexate is once a week . 6-mp is daily.
Typically if your hospitalized the docs tend to give iv steriods or oral steriods to get over the flare .
You really need to talk to your DH doc to help better understand his situation.
There are other biologics to try but it depends on your DH history which is why the GI needs to explain things to you.

Here is a doc from ccfa about the pyramid of drugs
http://www.ccfa.org/resources/understanding-ibd-medications.html

Good luck

 

[syzygy]

Docs sometimes poo-poo the effects of diet (saying the disease is purely autoimmune), but a lot of people with Crohn's are finding some benefit to dietary approaches such as the specific carbohydrate diet and paleo approaches. There is a lot of info on all that in the diet section of the forum. One thing my GI told me was to cook my veggies and peel my fruit, although this is mostly because I'm a bit prone to obstructions. (That's probably not for everyone.)

Remicade is indeed a strong drug that it takes some people a while to work up to after trying other approaches, so don't think your husband's GI isn't treating aggressively just because of that. Definitely let the GI know about your concerns and feel free to get a second opinion and check out someone new if you're not satisfied. How long has your husband been on Remicade?

 

[Beach bum]

Hi , this must all be very upsetting and frustrating for you.

First of all I would ask is he on any kind of supplement?
I am on remicade too and find it has helped me get better and live a relatively normal life but I also take a probiotic and multi vitamin with iron every day.
When I was first diagnosed (also about two years ago) I was suffering from anemia and getting that under control really seemed to be the turning point for me, before that I was constantly weak and sick.
Even though I am no longer anemic I notice pretty quickly if I stop taking the extra iron.

The second thing I would say is that stopping smoking or even passive smoking is one of the best things I did for my crohns, here is a link about it if it helps.

http://www.crohnsandcolitis.org.uk/.../Publications/Info-Sheets/Smoking and IBD.pdf

And lastly I really believe diet has its part to play, if i eat too much sugar , dairy or fat I know about it, so i try to keep to a sensible diet and when I was very ill I reduced fibre too although I have reintroduced it now that I am well. Have a look at low residue diets to help rest his bowel or even a liquid diet of soups and shakes ( I still juice regularly and believe in the power of that).

And the final point I would like to make , is no, he wont be sick forever , if he can find what works for him and it will probably be a mix of medical drugs and self help (diet and supplements) he certainly will be well again. I couldn't walk the five minutes to work two years ago , four weeks ago I did a half marathon

 

[dasJERMAN]

Definitely great information from all of those above my post. Another important thing is to stay positive even in the tough times. It's one of the only things keeping myself sane. And believe it or not I feel my body heals more rapidly when I am positive. Support from family and friends are always appreciated. Another thing that helps myself is a little prayer and meditation. I'm male, 26 years old and scheduled to marry my fiancé this January but Crohns doesn't care much for timing in life. I have been off of work for close to 7 weeks on disability. The first 2 weeks were spent in the hospital requiring surgical resection of 8 inches of diseased intestine including a blockage. I was then home for about 4 weeks recovering from surgery. I was scheduled to go back to work last Wednesday but my Crohns had another idea. I ended up back in the ER the Monday before I was supposed to return to work. Spasms and pain had escalated once again. I am now back in the hospital and had another surgery last Thursday only about a month later than the surgery before that. This time they removed 18 more inches of intestine the were not able to see on my surgery a month ago because it was laparoscopic. This time they opened me up to get in and make sure they don't miss any spots that can safely be removed. So as I lay here waiting for my intestines to "wake up" after last weeks op I know it will all help me in the end to get me on track to a semi-normal life again. Never lose hope in all the frustration this disease can bring. I've had the unfortunate pleasure of knowing this diease since 2006 and time doesn't make it necessarily easy but time will help heal both physical and mental wounds. Know there are always others that have been where you have and don't feel like any question is too stupid to ask. God Bless.

 

[Aarong]

Hi I have had Crohn's since I was 12 and am now 32 It took a few years to get mine under control at the beginning but once they get the right drug that suits u it will come right , I was good for about 3 years then had surgery to remove a part off bowel and then I was pain free for 7 years , the hardest thing I find is when I am healthy I forget to take my medication and it flares up again (now) , but as said above it always gets better , so hang i there and keep trying things that help , keep his iron levels right as I find once my levels get low I get sick again