I’ve been doing the acupuncture thing for about six weeks now with very little effect on my Crohn’s. However, two weeks ago my practitioner suggested I eliminate wheat from my diet. I agreed to try it, but she probably saw my eyes rolling. No bread? No cookies, donuts, twizzlers (that’s right twizzlers are full of wheat) and NO PRETZELS. If consuming wheat products actually is causing my gut problems, the fact that I was eating a half bag of pretzels every night might have been an issue.
But I’ve been avoiding wheat now for a couple of weeks and there was an almost immediate improvement in my condition. Plus the couple of times I fell off the wagon I noticed things got worse. I’m still having some problems, but I’m hoping over time things will continue to improve. I’ve also resumed taking turmeric and probiotics. Time will tell.
I did some research and found this article on the National Institute of Health website, it’s an overview of research on the inflammatory effects of grain and wheat consumptions. It’s a little difficult to wade through but has some eye opening information. And of course there’s Dr. William Davis and the “Wheat Belly Blog.”
There’s a lot of conflicting info out there of course. Katherine’s advice was to give up wheat, not gluten. She said barley, which contains gluten is probably OK. Some of the info I found recommends dropping of all kinds of grains, including corn. I’ve replaced pretzels with corn chips (I must have my salty snacks) and hamburgers with tacos without problems.
Just had my third acupuncture appointment. So I’m two weeks into the regimen. I haven’t really seen much improvement. Last week Katherine, my practitioner, tested some herbs on me so she could recommend an herbal blend to enhance the effects of the needle treatment. The test consisted of her putting various bottles of the herbal extracts on my stomach and taking my pulse to see how my body reacted. Then once she had determined the right blend, she placed one bottle at a time in my palm to judge the proportions of the mixture. I came away with an “intestinal health” blend to take five drops of four times a day and an anti cramping herb that I take when needed. She also recommended that I spend 15 minutes a day going barefoot in the grass. Really good for the spleen, I think she said.
I’ve gotten some new recommendations at each visit. The first visit was to not drink coffee first thing in the morning. I’m supposed to have the juice of a half lemon mixed with hot water and some protein before I can have coffee. This isn’t easy for a guy who is used making that first cup in a somnambulant state immediately upon getting out of bed. But I’ve managed to live through it. Another recommendation is to give up ice cream. My first reaction to that was, “Wait, can I cut an arm off first?” You can sacrifice a lot for your health, but do you really want to live a life without ice cream? I’ve surprised myself and even stuck to that one.
When I told her that I hadn’t seen any improvement and that I was going to pull the trigger on the Humira treatment, she got a little defensive, saying that I needed to give it more time. You might say the effects are a little pokey. So I agreed that I would continue for six weeks and then evaluate.
Another interesting addition to my treatment is the insertion of little mini-pins in my ears that I am supposed to keep in for five days. She said they were really small and held in with adhesive that was colored so you can hardly see them. I’ll be interested to see what Becky says about that when she gets home.
So my adventure with alternative medicine continues. I really want to be able to get on the plane to Kauai in November without having to worry about using my “I can’t wait” card in the line for the toilet.
Hey. It’s been awhile. The last post was on the health benefits of turmeric. I’ve been taking turmeric daily and have seen no improvement on the Crohn’s front.
A word of warning: One can’t really write about Crohn’s without writing about poop. There might be a good dose of TMI here on occasion, so if you’re offended or nauseated by scatalogical matters, read at your own risk.
I’ve been leaning more and more to just going the Humira route. I’m really miserable right now, constantly feeling crampy and having to run to the bathroom. One good thing is that the worst of it passes in the morning and I haven’t had to crap at work. The way our office is laid out and the lack of ventilation would probably result in me being asked to leave. There are a lot of unpleasant things about having Crohn’s, but the fact that you give off some incredibly nasty odors is among the worst.
I’m making one last effort to find an alternative treatment and avoid Humira and all the negatives associated with it. I’m taking a shot at acupuncture. I had my first appointment on Friday. It lasted two hours, starting out with a very thorough interview about my medical history. Then it was up on the table to have the needles inserted. It isn’t painful. Once the needles are in there is a period of time where you just lie there and let them do their thing, which I guess consists of getting your chi all adjusted. I kind of tranced out so I have no idea how long it was. When the practitioner returned she applied a ‘cold laser’ to my scars in order to release the energy that might be blocked by them (or something like that), it all feels very hocus-pocus to me.
I like the practitioner a lot. She also made a couple of interesting recommendations. Don’t drink coffee first thing in the morning. Eat something, preferably protein, first and also have a cup of warm lemon water. Then you can have your coffee. Also avoid peanut butter. Almond butter is much better. It should be, I stopped at the store on the way home to pick some up, it’s about four times the price of peanut butter. Maybe this isn’t a cheaper alternative to Humira.
I did come out of there feeling, well different. I definitely felt like my gut wasn’t as angry as it usually is, no crampy sensations. This continued until the next day. I woke up Saturday morning and experienced the usual multiple trips to the bathroom, but the proceedings didn’t seem as violent as before. And once the morning paroxysms were over, I felt really good all day.
But then something happened that made me start thinking about a completely different angle to this shit show. As we settled down for our evening boob tube session I set out to satisfy my craving for salty snacks with a bag of corn chips. As soon as I started eating them I started to feel crampy and I ended up spending the rest of the evening dancing with Doctor Crohn’s.* I did some research and it seems that some people have an intolerance to corn products, much like gluten intolerance. I’m going to see what happens if I start avoiding corn and corn syrup. I know, good luck with that!
I’m signed up for six weeks of acupuncture treatment, but if I don’t see some results in a couple of weeks, I might have to just bite the bullet and start up with Humira. I’m not sure how long I can last feeling the way I do, I must be losing weight and not getting proper nutrition.
I will keep you posted.
*I just made that euphemism up, I kind of like it.
Yesterday I had my follow-up appointment with Erin. As I’ve said before, Erin is a Nurse Practitioner. She can do pretty much anything an MD can do, but is nicer. So anyway, I’m just going to refer to her as my doctor.
I expected that this post would be about the questions and answers around going on Humira and that was mostly what my appointment was about. Erin was great at explaining how Humira works on Crohn’s and answering my questions about side effects, costs and alternative treatment approaches. But there was one small detail that stood out for me. When I asked her about diet she mentioned that turmeric had been shown to be an effective anti-inflammatory agent.
“What?!?” This took me aback because she has been very much toeing the party line of western medicine. She’s given me straight answers about the body of research around Crohn’s and the treatments for it. So if she would even mention something that you can buy in the health supplement section of HyVee, there must be something to it.
Turmeric, the spice, is made from the rhizomes and roots and bulbs of the turmeric plant. turmeric is a relative of ginger and the rhizomes look very similar to ginger rhizomes, but when cut open they are bright warm yellow on the inside. It is a main ingredient of curry and is used in many asian cuisines. It’s what gives the yellow color to curry dishes. It has long been known for it’s medicinal qualities and is a major part of Siddha medicine of Southern India. Incidentally, my daughter Quinn was WWOOFing at Hale Akua farm on Maui, where the main crop is turmeric. The Hawaiian word for turmeric is ‘olena, which is also the word for yellow.
Curcumin is the compound in turmeric that gives it it’s health benefits. This article from the University of Maryland Medical center is a good list of curcumin’s benefits, from indigestion to heart disease, and the state of research into each.
Needless to say, as soon as I got home from the doctor, I headed over the HyVee and got a bottle of turmeric capsules.
Colonoscopy day, everyone’s favorite day. Mine was last week. I’m lucky I get to have one every five years instead of the recommended 10 for those of us over 50. Thanks again, Crohn’s disease. There are few things easier to put off than having a camera up your ass. In fact I was about 3 years behind (no pun intended) schedule, so of course I was sure that there was some nasty malignancy brewing in there, undetected because of my procrastination.
For those of you who haven’t yet had the pleasure, this might be hard to imagine, but the procedure itself isn’t bad at all. The start out by shooting you up with Versed and Fentanyl. Which is to say they send you to Happyland. Besides you get to watch the live video of the journey up the poop chute, it’s almost like science fiction.
No it’s not the rubber tube being threaded up my ass that I dread. It’s the prep. They want your colon to be squeaky clean when they make their entry. If you’re going to go diving for treasure you want it to be in a clear spring fed river, not a murky Minnesota mud lake. So the day before you get to fast and flush. And by flush I mean drink a gallon of a foul-tasting liquid that has the most ironic product name in the universe, Golytly. There is nothing lyte about it’s effects. As the instructions say, “Expect to experience diarrhea, stay near a toilet.” Even a person like me, with forty plus years of Crohn’s, will be shocked by the purgative effects of this intestinal rocket fuel.
After the fun part was over and it was time to move on to the procedure itself, I got an extra bonus dose of discomfort. It’s become aware that I’m a difficult subject for I.V. poking. It’s hard to find a usable vein in my skinny arms. It took three tries to get me hooked up. The first two nurses failed so they had to call in the top gun to do the job. Maybe they could have had the expert go first. Just sayin’.
This time around the captain of the anal explorer wasn’t my usual G. I. doc, because we wanted to get in as soon as possible. Since my usual butt surfer is a guy not much younger than me, I was expecting a younger person, but when he showed up he looked like a clean-shaven Santa Claus. Maybe young people just aren’t taking up anal exploration as a specialty anymore.
So the spelunking began, the camera went into the cavern, some polyps were found and clipped off and everything seemed to go just fine. I got the report the next day that the polyps were just from inflammation, they weren’t malignant and would not become malignant. So good news. The bad news is that because there was active inflammation, they were unable to take biopsies for an assessment of the Crohn’s disease progress. It’s kind of funny how the report stated it. It said a follow-up would be required, but a couple of paragraphs down it said “This is an optional procedure.” OK, I pick the “not doing it” option.
Tomorrow I have a follow-up appointment with Erin, the NP that I saw a month or so ago. She’s going to give me the Humira pitch. I’m going to be a tough sell.
I’d love to hear suggestions for questions to ask about treatment options.
If someone asked me to name the scene a movie that most resonated with me, this would be it. My name is Bob and I am a hypochondriac. My gravestone will read, “I told you I was sick.”
So of course the fact that I was suffering from pain and bloating over the weekend, and that the NP thought I needed a CT scan to check for an obstruction sent me on a wild spiral of anxiety. Nevermind that I’ve had all the symptoms before and it proved to be nothing more than constipation, I convinced myself that I had a huge tumor lurking in my intestines and that I should stop buying green bananas.
At one time in my life hypochondria almost took over my life. Every little lump or sore was a death sentence that I would obsess over relentlessly. I obsessed over the possibility that I was insane because I was obsessing so much. Finally I went to a shrink and he put me on Celexa, an anti-anxiety and anti-depression medication. I got almost instant relief. I probably started dangerously ignoring symptoms. But alas the drug had some unpleasant side effects. Imagine that. So a few months ago I decided to wean myself off of it, which I did over a period of a couple of months. Until now the I’ve not been obsessing about my health. But Crohn’s and gut problems always get me worked up so I was spinning down the rabbit hole of paranoia for a few days.
The scan came back clean. You might have seen me skipping down 4th Avenue yesterday afternoon.
It dawns on me these recent posts on Crohn’s might come off as whining. Poor me, I have a chronic condition and it’s going to cost me a lot of money to treat it. If that’s the impression I’ve given, I apologize.
I don’t have anything to whine about really. My Crohn’s is about as mild a case as you can get. I’ve never had surgery or even been hospitalized for it. Sure I’ve crapped in my pants a few times and have gone through some miserable periods, but all you need to do is follow the Crohn’s hashtag on Twitter and you will realize I’m lucky. You can die from this. Young people are hospitalized and having colostomies and finding themselves unable to work. Not eating for days because it causes too much pain. So really I don’t have much to complain about. I should be thankful.
I have a couple of reasons to write about my Crohn’s disease adventures. One is that I need something meaningful to write here, and although talking about one’s shit is pretty personal, it gives me the opportunity to talk about things beyond what I had for dinner and what TV I’m watching. The other is that I hope I can help others with Crohn’s by providing information and telling my story.
I won’t be writing exclusively about Crohn’s here. I’ll probably still write about TV and what I had for dinner, review a book or movie, post some artwork and keep you posted about my battle with the bunnies who use my garden as a smogasbord.
First, I’ve created an aggregated feed of Crohn’s disease on social media. Check it out!
My last post I talked about the resurgence of my Crohn’s disease. After three years of remission it’s suddenly returned and I’ve been dealing with the symptoms a couple of months now. After the usual period in which I just hope that it will go away, I finally made an appointment with the doc. My usual GI guy wasn’t available so I saw a nurse practitioner. In forty-five years I don’t think I’ve ever had someone sit down and talk to me about my Crohn’s as long and thoroughly as she did. I recommend going to nurse practitioners, because they will take the time to listen to you. My GI doc is a really nice guy, but he always seems like he’s in a rush to get out of the room.
Last night I was calculating how much Humira would cost. I came up with $8000 a year. But that’s not right. The direction of this post has changed since I started writing it. I emailed James Romeo, the agent that handles my supplemental Medicare insurance. He got back to me within the hour and walked me through the coverage and the dreaded “donut hole” in Medicare prescription coverage. I’ll try to explain that in a future post. I already had a pretty good handle on that, but our conversation revealed that I’d made a mistake when I was calculating the cost in my head. Hell, it would only cost around $4000 a year. Whoopee! James says it’s the most expensive medication he’s run across. Do I get a prize?
I suppose you could make the argument that the folks at AbbVie spent a lot of money on R&D to develop Humira and they need to get that back and make a profit. I’m not too worried about them, Humira sales grossed $14 billion last year. That’s with a ‘b’.
We have saved for retirement and I thought we were going to be in great shape financially, but that number could mean we wouldn’t be able to do all the things we’ve been looking forward to.
One of the things the NP said was that continuing without more aggressive treatment might result in requiring surgery. When I think about it, from my standpoint surgery would be more cost effective than the drug. With the Medicare coverage that I have I could get to the deductible pretty fast. I could just roll the dice and hope that I didn’t have to have surgery too often. After all it hasn’t happened yet. Another argument was that I wouldn’t want to go on prednisone four or five times a year. Well I’ve needed prednisone only a handful of times in 45 years, maybe twice in the same year one time. Another temptation to just roll the dice.
Currently there is a class of drugs coming on the market called biosimilars which work like Humira and the other biologicals, but presumably would be less costly. But the bigger question is whether they work and what are the side effects.
Update on my condition
I reported in with an update for the doc, mentioning that I had pain and bloating, so now she want me to come in for a CT scan next week. Bah.
