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.

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.

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.

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!

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.

This afternoon was my first gastroenterologist appointment since late last year. The appointment was supposed to be a few weeks ago but got canceled (by them) due to some emergency. Sitting in the very crowded waiting room, Kathie and I overheard other patients talking and complaining about how long they had been waiting… some had been there an hour before us, and were being told that the wait could easily be another hour (for them… so two hours for us). We got up, rescheduled for a few weeks in the future and left. That’s the first time I’ve done something like that, but I guess it’s the first time in a long time that I’ve gone to a doctor when I’m not sick, and had that flexibility. Sure is nice!

In general, feeling very well, still feeling better than I have in the past 8 years or so!

The roller-coaster ride continues!

“There are cases reported as extranodal classical Hodgkin lymphoma arising in Crohn’s disease treated with long-term immunosuppressive treatment, and recently, also with anti-TNF administration. In immunosuppressed patients these cases are nearly always EBV positive and they may spontaneously regress after reduction of immunosuppressive therapy. Given the clinical setting of this patient, reduction of immunosuppression may be an option, especially if the EBV driven process is localized”.

So, I want to discuss this further with my oncologist to find out if I really need to start chemotherapy right away or if I can just stop my immune suppressants and then monitor the Hodgkin’s over time. Maybe I’m getting my hopes up too much, since I’m not really looking forward to chemo, but I do want to at least discuss this further to understand what it means.