Husband with Crohns

[Neil n' Dena]

Diagnosed 7-23-12

My husband has been newly diagnosed with Crohn's Disease. For as long as I've known my husband (13 years) he has always had stomach issues, gas issues "bathroom issues". He does somewhat go to the doctors and they have just chalked it up to being IBS and or acid reflex. About a year and a half ago is when this journey really started in gear, he was supposable had C Diff and was given some medication to get rid of the bacteria. In April 2012 he was hospitalized for "Divertiulitus" saw a GI in the hospital and we just thought it was a one time thing or just need a change in our diet. He stayed in the hospital for about 4 days and felt A LOT better, we were told by his GI that he needed to do a follow up appointment.....well time went by and with working and supporting his family never went back. The beginning of July 2012 is when things went down hill for him. In a matter of days he was in a huge amount of pain (lower adom) went back to the GI and they saw the amount of pain he was in and they were hearing something not normal in his small intestine they gave him 20 mg of Predisone. A week later had a colonoscopy and GI walked in after procedure "ITS CROHNS" he didn't even blink an eye and doubled Predisone. A week after that the pain came back WORSE, vomiting violently....trying to take a shower vomiting, laying over the couch trying to ease the pain nothing was working. We went back into the hospital and he had a blockage in his small intestine they put him on 90mg of Predisone through IV. We went back to the GI a couple days ago and the steriods aren't helping so they told us we need to start Remicade.

 

[Ckt]

I'm so sorry your husband is going through this!and you as well..I know for my family it is so difficult to see me in pain. I have found this forum to be a godsend..i am fairly new too and it gives me so much relief to post and read the posts of others.
ThE biologics like remicade has helped so many people. I started on all different crohns drugs..I think I have been through all the oral medication..including high doses of prednisone which was horrible for me. I couldn't sleep,felt anxious and sort of manic..my weight ballooned up from 135 to 200 in a couple of months with a moon face): I do not like steroids!!i now will only take them via Iv if I have to be in hospital then switch to endocort orally for the wean..I'm off those things as fast as possible!
I was also on remicade fo a few years until one bright gi doctor took me off of it and I built up antibodies causing a severe reaction(face and throat swelling) so I had to be stopped..I have been on remicade for a few years which has been okay..no reactions and it seems to be helpful.
Many get and stay in remission on their medications. Although diet didn't help me as far as putting me in remission,it does help alleviate some symptoms. I try to do a high protein low carb and low fat diet. I also have short bowel syndrome from a bunch of resections for bowel obstructions so I don't absorb fat well,bile,or minerals/vitamins. Most of my disease has been in my small bowel.
I take vitamin D,B12 injections,iron infusions,magnesium,and fish oil. I don't like taking meds just like most but these help me a lot.
I know there's a ton of info for you both to take in right now.and I'm glad you found the forum.theres great info and even greater people on here that will be supportive and help in any way they can!!

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear your husband is having these troubles.

Is Prednisone the only steroid they have tried? I know for some this does not work so Budesonide can be used as an alternative. As the docs are thinking Remicade it sounds like the blockage is down to severe inflammation?

One thing it may be worth looking into is enteral nutrition, this means going on to a liquid only diet but has been shown to be very helpful at really calming the tum down and can be as good as steroids without the worry of the side effects.

I hope things can improve for him soon, pls keep us updated on how things are doing.

AB
xx

 

[Neil n' Dena]

Thank you... Yes predisone is the only steroid he has try...and GI said he is steroid sensitive so no steroid would work for him. He did loose about 35 pounds and my husband is very active and his work keeps him lean (electrician) so him loosing that much weight was a scary seening that he's always trying to put weight on. He never got a "steroid face" "moon face" but did gain 14 pounds which was good. I keep hearing about the natural diet and stuff and just scared that if we were to stop all meds and do the natural thing he would relaps or worst have another blockage. We really like his GI and has been correct about everything but we are just learning not 2 crohns patients have the same symptoms or issues.

 

[David]

Hi there and welcome. I'm sorry to hear of your husband's struggles, my heart goes out to the both of you.

In case you haven't seen it, we have a forum dedicated to Remicade located here in case you would like to connect with others who are on it.

Has anyone mentioned trying any dietary changes? Is that something you think your husband would go for?

 

[Neil n' Dena]

Thank you.. We have changed his diet since April and again he's fine for a while then out of no where it flares up again. ( and I don't know if its the smoking) I know what everyone is thinking he knows how bad it is to smoke with crohns and he is trying to quit.
So many triggers he could have with so many different things. I'm not the one with crohns but I feel on pins and needles with him.

 

[David]

I'm glad he's trying to quit smoking. And I can understand your being on pins and needles. One thing you may want to consider is going to counseling together so that the two of you can better handle the situation.

 

[Neil n' Dena]

Thank you...I know he is handling it a lot better than I'm and that's probably because I like things in order, organized and in our control and none of that has happened these past couple months. I don't like surprise when it comes to my family's health. The better I educated both of us the better we should be there is just so much information to take in all at once.

 

[David]

Indeed, there is SO MUCH to learn and the curve can be quite steep. But we're happy to help you every step of the way in that education process.

 

[Ckt]

This forum had helped me tremendously and I had done a lot of research prior to finding it. Not only do I get and give support(giving helps me too to feel useful!),I learned about vsl3- dr which had been a revelation!
I was using a probiotic I thought was good that I bought at my local health food store. This one-vsl3/dr, is 1000 times stronger with 8 strains of beneficial bacteria to help colonize the gut. Even my gi doctor here didn't know about it and clinical studies have shown that the majority of patients reach remission on it 50% more!both with no other treatments and with mesalamine but at a much lower dose!it was impressive to me!!
And I don't sell the stuff!:rof: