‘crohn’s’ Category

PET Scan #7

Went for PET scan #7 last week, and my doctor this week said it was completely clean, as expected. I’m now switching to twice a year for future scans. It was a little over two years ago that I had my Crohn’s surgery and started chemo, but it feels like forever — which is fine by me!

Fortunately, my Crohn’s has also been completely gone since the surgery, so for the last 18 months I’ve been healthier than any time in the last 20 years. The only undesirable side-effect of having working intestines is that actually digesting my food has caused me to gain considerable weight — 30 pounds compared to where I’ve been the last 10 years or so. This year I’m making some lifestyle changes… I’m not calling it a diet since diets tend to be temporary things. We’ll see how it goes, but the goal is to exercise more and eat healthier in general. It’s only been 1-2 weeks so far, but by writing it down here, I’m creating more incentive to continue.

Coke Zero

It’s been over a year since my [[wplink Surgery]] to fix the most problematic areas of Crohn’s disease in my small intestine. As I’ve mentioned before, the surgery was a huge success, and I’ve been feeling better than I have in 8 years or so. One consequence of fixing this long-standing problem is that my intestines now function much better — meaning I actually digest everything I ingest. While this is great, and I wouldn’t have it any other way, it also means I’ve suddenly started gaining lots of weight, after many years of being able to eat anything I want and staying at a constant weight. Some of the added weight isn’t a big deal, as I probably needed to get to a “healthy” weight. But, it hasn’t stopped there, and I’m up about 20 pounds from my previous steady-state (up about 40 pounds from my pre-surgery state).

Where am I going with all this? Well, you probably figured it out from the blog title, but hell has frozen over and I’ve started drinking diet soda! I still think Diet Coke is pretty gross, but I sampled some Coke Zero to try to offset some of the 3-ish cans of Coke per day I’ve been drinking most of my life. Coke Zero isn’t bad, and I’ve switched over to it almost 100% at home. Diet Coke came out around the same time as the ill-fated “New Coke”, and was based on the same recipe. Coke Zero is based on the Coca-Cola Classic forumula, and thus tastes much better. Of course, using it to wash down bags of Doritos still isn’t going to help too much, but I’ll work on that next.

PET scan results

Back on August 22 I posted a “[[wplink 3-month-health-update-2]]” blog entry, explaining that I had just had my follow-up PET scan. Especially clever readers may have noticed that I never posted the results of that scan.

The earliest oncologist appointment I could get was about 3 weeks after the scan, on September 12. When we went to the appointment, we were expecting the scans to show no activity at all, just like the one 3 months earlier after my last chemo treatment. However, the scan did show activity, only it wasn’t in the small bowel where my lymphoma was… this time the activity was in my colon and my stomach! The scan write-up was completely non-committal about what this could mean:

“While these may both represent physiologic uptake or secondary to inflammation, lymphomatous involvement is not entirely excluded and cannot be definitively distinguished by image.”

We scheduled a colonoscopy and upper endoscopy in order to get some tissue biopsies from both areas to get a more definitive answer. The colonoscopy was last week, and the endoscopy was this morning. We should have the results of the colonoscopy biopsies in a few days. On the bright side, the colonoscopy showed my insides to be at least visually much better than during the few exams, with much less Crohn’s inflammation.

Looking forward to getting these results, since the “uncertainty roller-coaster” gets pretty frustrating after a while.

Popcorn

We like popcorn, and a couple years ago I finally broke through the taste vs. laziness barrier and started eating microwave popcorn. It wasn’t quite as good, but it was really easy. I always found it to be a little “tough” though, compared to “fresh” popcorn. Also, since popcorn can be difficult to digest, it’s one of the first foods that patients with active Crohn’s disease are told to avoid.

Well, about a year and a half ago while reading the Crohn’s message board I found the answer: B.K. Heuermann’s microwave popcorn. Their popcorn has been selectively bred for the past 10 years to have virtually no hull — the hard covering of the kernel — making the popcorn softer and fluffier and more enjoyable to eat. It also tastes really good.

They have several flavors (Kathie’s favorite is the kettle corn, and mine is the movie theater style) available for mail order, so if you like popcorn, give it a try!

Crohn’s update

I finally had my 6-month follow up appointment with my gastroenterologist… about 4 months later than it was suposed to be. It takes about a month to get an appointment, and my last two attempts ended up being rescheduled. We discussed the results of the ASCA (anti saccharomyces cerevisiae antibody) blood test I had done a few months ago, which again strongly confirmed the Crohn’s disease diagnosis. Since I’m feeling so much better since the surgery (with over-the-counter assistance), we’re calling me “mostly in remission”.

After surgery and remission, Crohn’s patients are supposed to stay on 6MP immune suppressants to reduce the risk of a flare-up, but since 6MP is (rarely) associated with causing lymphomas and I’ve already been down that road, my GI doctor ended up saying “I don’t know what you should do!” Instead, I suggested Pentasa, a Crohn’s drug I had been on for 8 years or so, taking 16 pills a day. Kathie and I were pretty amazed when he replied: “we now think Pentasa doesn’t have any benefit in Crohn’s patients.” Wow… I just did some math and I’ve taken somewhere near 40,000 of those pills. I’ve never felt any tangible benefit from them, but was told by 3 GI doctors in a row (including this one) that it’s important to stay on them. It just goes to show how little they know about Crohn’s even after 100 years.

The next step is to have my oncologist forward copies of my last 3 PET/CT scans to my gastroenterologist. As long as I have to get the scans every 3 months for the Hodgkin’s follow-up, we might as well track my Crohn’s level with the same scans. The amount of intestinal inflammation remaining now after the surgery will determine what we do to try to prevent a Crohn’s flare-up. My 3-month oncologist appointment (about a month late) is this coming week.