Desperate

[hihanoyate]

desperate

wondering if there is someone out there that can give me ideas as to non steroid drugs to combat Crohns. My husband has had this for over a year now and is allergic to any of the steroids taken to help with crohns. Any advice?

 

[Rebecca85]

Wow that sucks- steroids are normally given to deal with allergic reactions!

As well as steroids, there are 5-asa drugs (eg mesalamine). These are quite mild but tend to have few side effects. Then there's immune suppressants such as azathioprine. Antibiotics can help some cases. And finally there's the biological- these are the newest type of drug and work (I think) by targeting specific parts of the inflammatory process.

If you can manage it, enteral nutrition (where you stick to a prescribed liquid diet) can rest the bowels and help it to heal. This can be used instead of steroids to gain remission, then a milder drug could be used to maintain remission.

Do you know what sort of Crohn's your husband has (where is it, does he suffer from fistulas, etc)? And do you know what drugs or treatments have already been tried?

 

[Rebecca85]

A quick google also suggests that allergy to one steroid does not necessarily mean an allergy to a different type of steroid. In particular, prednisone and budenoside are often used to treat Crohn's and have a different structure to each another, so don't usually cross-react. So it may be worth trying a different steroid to see if he is allergic to all of them or just one in particular.

 

[hihanoyate]

Hi Rebecca,
Thank You for responding. He has tried all the steroids out there. Each one reacts in the same way. He has already in a year and a half had two surgeries for the fistulas. A year ago he went from 264 lbs down to 108 and was told to get his final arrangments in order. His bowel movements are quiet frequent, some times 19 in one days time. His diet is usually quiet bland but this hasn't helped. As soon as it goes in his mouth, within 20 minutes its coming out. I have no idea how to help him especially with the pain. Right now he is on metaformin. I just know theres got to be something out there to help with disease.

 

[2thFairy]

Metformin is for diabetes. He has diabetes as well? Yikes!

Rebecca pretty much covered the most common other paths to take for Crohn's. I'm really shocked that his doctor hasn't tried any of these yet, especially considering it has been a year. You might look into switching to another doctor.

 

[hihanoyate]

Thanks 2thfairy,
yep he's also a diabetic... I know that there is something out of canada but it has not been allowed here in the US from the FDA...I just got to keep researching...

 

[Rebecca85]

If he has fistulas, then he is a good candidate for a biological drug. There is Cimzia, Remicade, Humira and Tysabri (but Tysabri tends to be the last chance drug be ause of the potential for serious side effects), and there's always new ones undergoing clinical trials.

I can't believe his GI hasn't even considered or tried anything other than steroids. Please go get a second opinion!

 

[Terriernut]

I just got my morning coffee and saw this. Oh my word. So many drugs out there for your hubby to try. The GI needs to be fired, and another one found. We have a member here who is diabetic and has crohns, horrible problems with pred as well.

However, as has been mentioned, with the fistulizing, biologics are normally used to treat this. Please, can you get in to another GI? It sounds like the one you have is still in the dark ages!

 

[SomethingIsMissing]

Hello, I am so sorry he is feeling so rough.
Im just going to through this out there..& some might be really turned off to it
My weight was very low.....I am heavier - sometimes it falls back off, but not all of it.
Check out organic barley green, ask his Dr. ask a CRS , nutritionist.. check out that for some it can heal tissue. I know an eye roll is happening out there somewhere..I am not saying it is a cure. But it really can (for some) calm the inflammation - which in turn can help heal the area which helps absorb nutrition ..eventually leading to some ability to finally gain some weight and get a bit of a foot hold.
The side effects, well additional nutrition. A stomach that might stop hurting. It is sugar free.
Another thing he could ask about is questran. It might helps slow the bowel movements.
Take care!

 

[braveheart]

Appart from predinsone you have other anti-inflammatory drugs

* Sulfasalazine (Azulfidine).
* Mesalamine (Asacol, Rowasa, 5-ASA).
* Budesonide (Entocort)

Then you have the the inmuno modulators
* Azathioprine (Imuran) and mercaptopurine (Purinethol).
* Infliximab (Remicade)
* Adalimumab (Humira)
* Certolizumab pegol (Cimzia)
* Natalizumab (Tysabri)

Then you have the Antibiotics
* Metronidazole (Flagyl)
* Ciprofloxacin (Cipro)

And finally yoy have
* Anti-diarrheals
* Laxatives
* Pain relievers
* Nutrition supplements

I am not a doctor but I think Entocort is the steroid with less side effects.
Then the inmunomodulators are the ones that work best for the long term use.
Finally, if he has been losing weight he could try Ensure plus and other nutrition supplements.

You could ask your doctor about these. I hope your hasband get beter soon.

 

[hihanoyate]

Thanks everyone for your inputs... I think we need to find another Dr. He has tried Humira, Remicade, Cimzia with no luck. He has also had his Gall Bladder removed 2 years ago... This runs in his family.. His father has it mildly, and now his 2 daughters are showing signs of this disease... we've done anti inflamitories with very little relief. His Dr. recommended a radical colonostomy but he refuses to take it that far. Here it is 11 am and he has already had 5 BM's... He cycles weekly and is just now in the slofing off period. He'll have a couple of decent days after this process is thru, then it starts all over again. During his last surgery his sphincter muscle was cut by accident so he has no ability to muscle anything back...

 

[Rebecca85]

If he has had his gall bladder removed the that certainly won't help with the diarrhoea! You could try questran, which is specifically designed for that problem, or you could try psyllium husks (some of our members have had good results with those, they will have advice for getting the best results too).

 

[hihanoyate]

thanks Rebecca and to all of you. you have given me some great leads and ideas...

 

[GFinDC]

I don't know if this will help, but pro-biotics are another option. Some members are trying the gluten free diet. It might help a little, I don't know.

Can he reduce the amount of liquids he takes before eating? I think the psyillium husks are a good idea too but there is a potential of blockage if they are taken with too little water.

The enteral food option sounds like a winner to me.

 

[hihanoyate]

Thanks GFin.. Going to start researching the probiotics.. Wanted him to try the whipworm I've heard about being very successful but he refuses to go that course...