Newly Diagnosed

[shutz1012]

Hi All,

Just thought I jump on board and join your forum. My husband, who started having some abdominal issues this summer, has "unofficially" been diagnosed with a "mild" form of Crohns in the TI. I say unofficial b/c we are waiting for his biopsy results from today's colonoscopy. MD seem to think it is, thinks it's mild, and thinks we've dx. it early, so...he is starting him on meds.

I did not want to hear this, especially being a RN, but I guess I'll have to accept it. I was in denial a month or so ago when his CT scan came back abnormal, but I have taught myself to accept it, as it could be a lot worse and there are many ppl. out there who are in fact a lot worse off.

I now it's chronic in nature, but so are other "diseases" and if not managed correctly, this and those other could be disasterous.

Now, he will start his Pentasa tomorrow, so I hope to see some promising results with this. MD told him it could be up to 2 weeks before he notices a difference. Is this true?

He also told him to continue to eat like he did before, as it will take time to see/figure out if there are any foods in particular that bother him. He stated each and every person is different, some have to have very strict diets, and others can eat almost anything.

Sorry to ramble, but its new to us. And what got him to where he is now is bloating, pressure, loose stools - not liquid(only 2-3 times a day) - and the "pressure" was gone after these BM's, gassy, and weight loss. No pain what so ever.

Thanks for listening and I look forward to your responses!!

 

[muppet]

2 weeks is not unreasonable to see if Pentasa is going to work. If his case is really mild it could be enough. I need Lialda or Prednisone to get into remission but my case is severe and I've had it almost 3 decades (it tends to get worse the longer you've got it for many/most patients).

Crohn's, as horrible disfiguring diseases go, isn't such a bad one if you've got to have one.

It's true that diet effects everyone differently but there are some "frequent fliers" that bother most sufferers like:

popcorn
peanuts
spicy food
whole grains
seeds
dairy
beef

It's very, very difficult to isolate an IBD-based food sensitivity because the interval between ingestion and irritation varies widely even in the same individual. There are a number of competing theories. My daughter and I will be starting a drastic ketogenic diet at the end of this month based on "Breaking the Vicious Cycle" that many patients have reported success with, but it's probably more restrictive than your husband needs from the sound of things.

Good luck. You're an RN so you already know how to do your research! Do you have journal access at your facility? It helps!

 

[Silvermoon]

Hi Shultz, and welcome to the Froum!

Yes, two to three weeks is pretty normal before you see results, especially with the "first line" meds. No pain is a good thing!

I was told the same thing about my diet when I was diagnosed 20+ years ago - "trial and error". One thing that helped (myself AND a lot of others) is a food diary - much like you would use for testing a possible food allergy. If he thinks one thing may upset him, avoid it for a bit, then on a day where gas and bloating and such may be less of an issue, try it and see what happens.

It sounds like if it is in fact CD, he has definitely caught it in early stages, and that is awesome. Like you say, proper management of the disease can go a long way to preventing issues later on in life.

Hope all goes well and you find the support you need!

 

[Walt]

Hi Shutz,
Looks like Silver gave you an extra 'L' ?
She's nice like that!

Welcome to the forum, we're glad to have you aboard.
hope to see you around
Walt

 

[scottmyster]

HI Shutz, welcome to the forum. Like silvermoon said keep a food diary and write down the foods that agree with him and the foods that don't. Also, like muppet said and he listed just a few items that causes grief. Anything that says whole wheat stay away from because it's too hard to digest and hard on the bowel. YOU can look into a SCD diet you will find it on the web.It's basically a simple carb diet. I have had it for 21 years now and was in remission for 15 years. so, i boil all my food even meats and poultry. it keeps the fat out of the food. it's all trial and error and if can control it with the right diet and meds. He will be fine.best wishes

scott

 

[shutz1012]

Thanks everyone for your kind replies so far!!!

Well, he has been on the Pentasa for a little over 48 hours, and believe it or not, he is already seeing an improvement!!! He called me from work today to inform me of his BM this am, lol...and it's already starting to change....I was estatic!!! Geez, it's amazing how we get so excited over "crap", hahaha... He is having "minimal" bloating and gassiness, appetite has picked up, feeling of fullness rather quickly is also starting to decrease, so I just hope and pray the he will be one of those lucky ones who is on Pentasa for many, many years and it does the trick.

Yes, I realize it's early in the game, but when the MD told us a couple of weeks for results and we're seeing them in 48 hours, we're both happy campers. I just hope the weeks and months ahead will only get better.

 

[David]

Welcome! I'm glad he's already responding well, that's great. Here's to continued improvement and eventual remission!

 

[shutz1012]

Well, the doctor just called and it is official, my husband does in fact have Crohns. The dr is happy that he has had such a quick response to the Pentasa. He will follow up with him in a month, so here's to hoping that he continues he see relief from the Pentasa.

 

[David]

Thanks for the update! All my best to you and your family. I hope you stay in touch from time to time

 

[shutz1012]

Thanks for the update! All my best to you and your family. I hope you stay in touch from time to time

Will do, as I'm sure I'll be posting questions, and hopefully helping some in the future. Like my first question: How do you know when you are in fact in "remission"? When you are completely symptom free?

 

[David]

That's a good question as I get the feeling various people define it differently. So I just posted a new thread asking that very question. Keep and eye on it (I would go to the thread tools link at the top right of the thread then select, "subscribe to thread") and let's see what people say

 

[shutz1012]

Thank you David!