To Be Or Not To Be Crohn’s

Haven’t updated in a while, so I thought I’d do so after a little news now.

After going back on the Reglan, the shakes and “crawling out of my skin” feeling came back pretty strong. The GI doc lowered the dose twice over a week and half, but nothin-doin. Wasn’t doing anything for the nausea either.

When that was still the case last Wednesday, he brought me in to the office to talk it over. Even though he had said “no Crohn’s” in mid-April because the camera pill indicated “ileitis, not definitive of Crohn’s” and diagnosed gastroparesis, he said he is still suspicious of Crohn’s.

Another reason he stated “no Crohn’s” was because the prednisone was not making any difference for me. I asked about that. He said the thing is, 20% of Crohn’s patients don’t respond to prednisone, so I may be in that 20%.

So, I’ve been off the Reglan for a week now. He also took me off Nexium and changed that to a med called Kapidex to see if that makes any difference for the stomach acid. Nexium hadn’t felt like it was doing much that way.

The day before I saw him, my regular doc had ordered a bunch of blood work to check my nutritional and other stuff, since I am still fighting quite a bit of weakness, fatigue, some sweats/chills/temperature dysregulation, etc.

GI doc said he wanted to see how that all comes out, then consult with regular doc, and may do another colonoscopy to check condition of ileum and do more biopsies to see if he can confirm or deny Crohn’s.

He also took me off Asacol, which is the med for the intestine that I’ve been on since early February. If he does another colonoscopy, he doesn’t want meds masking any symptoms.

In the mean time, I saw my regular doc yesterday (Tuesday) for blood work results. For the most part, it all came out fine. That’s good in the sense that my body is doing OK, even though I’m still battling symptoms. The weakness and fatigue is most likely coming from not taking in enough calories.

I’m down 58 pounds at this point. Still difficult to take anything in when it always increases the nausea. Even though I’m still on liquids only.

So, next Tuesday (the 25th), I’ll see my GI doc at 3:15 and he’ll let me know where we go from here. I’ve also been prayerfully researching some other, holistic-type treatment options as well.

In other news, we did finally get our second vehicle replaced after Colleen’s accident. Hard to believe that was a month ago already. Insurance totaled the van and we found a 2003 Chrysler Town & Country in good shape to replace it. Got a good deal, though it adds a payment to the budget that we didn’t have for a while.

Lastly, I just decided in the last couple days to NOT travel to Atlanta for our annual Foursquare Convention. Feeling like I still haven’t turned a corner on whatever this physical battle is, I don’t feel physically stable enough to travel.

I’m very bummed about it, as the new President is being selected at this Convention. I was also going to be presenting a workshop on Pastoral Burnout and was very much looking forward to that opportunity. There are also some friends near there who used to attend NewHeart that I was looking forward to seeing.

I do, though, feel like it’s the wisest decision to make right now. There is just no telling right now how I am going to be doing two weeks from now.

So, there you have the latest!

  • Ron Archer
    Posted at 23:29h, 19 May Reply


    Thanks for the update. We’re praying for you every week and looking forward to the time you can join us again on Wednesdays. I so appreciate your openness and vulnerability. I pray for greater revelation and perseverance and deepened faith to result from this intense physical trial your enduring.

    In His Love & Grace,


    • Paul Kuzma
      Posted at 01:21h, 20 May Reply

      Thank you Ron. I have missed being at Pastor’s Prayer (and a number of other things) very much. I am looking forward to getting back into the stream when this gets ironed out. I appreciate your note Ron!!


  • Judy Corbett
    Posted at 18:43h, 21 May Reply

    Wow Paul…this just has to be getting so hard with all the chopping and changing of meds, and the waiting..waiting…waiting to see what will happen next. My heart goes out to you so much. I am still praying for God’s mercy and grace to shine upon you and that you will be
    healed soon!

    You Will Get Well!!
    Judy 🙂

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