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Just got Diagnosed, need advice!

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Crohn's Disease
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Posted 7/2/2011 1:36 AM (GMT 0)
Hi! I am new to this site, and it is the first one i have found for Crohns. I do not have Crohns, but my husband does.he is 22. He just got diagnosed a couple of months ago. the Drs say it is severe, but he just had a colon- endoscopy last week and the results were far better than expected. He starts Remicade on the 12th. What should we expect from the Remicade treatment? Most common side effects? Does it affect fertility? (trying to have our 2nd baby) The Dr said there is only a 10cm portion that is inflamed and he has some internal hemorrhoids. one possible fistula. Is that enough to be considered severe?
My husband has switched to a meat free diet. We noticed it was his largest trigger. Has anyone else done this? ANy advice on natural remedies or just things to help? My husband hates taking medication! Before this i had to fight with him to take Tylenol for a migraine....
One more question, DH is in the army, and might be facing a medical discharge. Any advice from anyone who has been through it?
Any and all advice is welcome and appreciated! thank you!
Posted 7/2/2011 2:09 AM (GMT 0)
Remicade usually works pretty well, at least for a while. Some people, like me, develop an immunity to it, others have it work for a very long time. A very small percentage are allergic, but because it's administered via infusion, there will be nurses and whatnot right there to respond if that happens. The infusion itself usually takes several hours. Maybe it was my symptoms, maybe it was waking up so early, or maybe it was the drug itself, but I was always tired after my infusions.

As far as I've heard, it doesn't affect fertility in either sex. In fact, I'm pretty sure there are several women here that got pregnant and gave birth all while on Remicade.

Severity is pretty subjective, much like pain.

If his rear is sore, I'd suggest Calmoseptine. It's a mild ointment that makes life a lot more bearable. Other than that, avoiding caffeine and alcohol are really the only generally universal things I can think of, and even those have a minority who are unaffected. Much of dealing with Crohn's is simply trial and error, and in my case, it's likely to change. I had a run of about 3 weeks where Cheese bothered me, but before/after that it's been my default food.

I suggest your husband get over his aversion to medicine. There's no room for that with chronic illness, especially not with one as unpredictable as Crohn's.

As far as the army is concerned... I'm not sure. I know of a cop nearby who has Crohn's and is on active duty and whatnot, but I suspect the military's requirements will be more stringent. Even if he is discharged, once his symptoms are under control, there's no reason he can't go back to work. Maybe not at the same position, but I would imagine there's all kinds of private sector stuff he could do.
Posted 7/2/2011 3:22 PM (GMT 0)
Hello and welcome to Healingwell. Remicade is one of the best meds for your hubby's types of Crohns. I pray he has great success with it. Many on the forum have had good results from it. As Bane said, the nurses will be there if he has any reactions. Most don't, but some can.

Also, I have lived with this darn disease for nearly 36 yrs. One thing your husband is going to have to learn is that with this disease you have to learn to get used to taking meds. This disease must be treated at all times or it will get out of control and you could end up needing surgery or other problems. So make sure he is compliant with his meds.

Probiotics are very helpful for us Crohnies. I personally take Primadophilus Fortify by Natures Way. You can find it in the refrigerated section at your local health food store. Others use VSL#3, Align, and Culterelle to name a few. I went from having lots of d to just 1-2 a day. We tend to have a bacterial imbalance with Crohns and the probiotics help to even out the bacterial fields. Many also take folic acid, Vitamin D3 and B12. With the B12 if you use it orally make sure you get the sublinguals as we don't tend to absorb the other B12.

He should also try to find a diet that works for him. I personally follow a low residue diet and that works well for "me". Others follow the SCD or Makers Diet. With the SCD and Makers diets these are a little more restrictive and must be followed to the letter to work properly, but some are having success with them.

Again welcome to the forum and ask all the questions you may have. Someone is sure to have a answer. Hugs!
Posted 7/2/2011 8:45 PM (GMT 0)
I think fistulas and strictures are the defining line for passing the mild/moderate that I have.

Remicade is sure helping me.  Little or no side effects.  Tired for a day or 2 after the infusion.

Buy the pill minder to help him remember.  I hated taking pills as well, I used to take 1 vit C a day when I had to quit drinking OJ.  Now I am pretty religious about it.  I would rather feel well, with a good quality of life and be tied to taking pills than it be the other way around.

 

Posted 7/2/2011 9:20 PM (GMT 0)
Hello and welcome. You have gotten some great advice so far. I just wanted to add that most people with Crohn's go years in between flares without any trouble, as long as they take their medication and watch their diets, avoiding the foods that bother them. The time right after diagnosis is the hardest and it takes a bit of time to find the right medications and the right diet plan. I hope that your husband is able to avoid the army making the decision on a medical discharge until the doctors have been able to give the remicade a chance to work. If it works for him he could have years of feeling good ahead. I hate to see people have to give up the jobs they have chosen because of CD. Good luck and I hope things calm down soon.
Posted 7/2/2011 9:31 PM (GMT 0)
Thank you all for the advice and suggestions! They are very much appreciated!
Posted 7/2/2011 9:43 PM (GMT 0)
I missed the army aspect of things, I am not sure they will keep him in no matter what he does.  You have to look at it from their perspective.  They can't afford to have him in the field and be unable to do his job, protecting his life as well as others, due to episodes or running the latrine.  That medical may not be such a bad thing, hopefully they will see to his remission first.  But being forced out against your wishes, desires and dreams always stinks.   I wish I had been correctly diagnosed 20 years ago while in myself.  He really needs to talk to his First Sergeant to find things out. Sooner than later.  Maybe he can do a quick change on career fields that will keep him of a battle field that would then allow him to stay in.
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