Probiotics, second visit to GI, etc.

Just a quick rundown of events up til now...

I started getting symptoms of CD in my early teens. I have lived with it constantly for over 20 years now. I have not been in remission ever. Not once in 20 years. Well, that's not quite true. Last year, I had a lower respiratory infection. I told the Dr. that antibiotics seemed to make me have even worse D than I normally did. He prescribed Levaquin to clear the infection, and told me that the chances of me getting worse D from the Levaquin were far less than the usual antibiotics. At around day four of taking the Levaquin, I achieved three beautiful days of remission. I had the first normal bowel movements I had had in over 20 years.

Fast forward to last month. I had been taking large doses of Immodium (8 to 12 pills per day) to make it through my days at work. I finally broke down and saw a GI for the first time on October 9. I had a colonoscopy the next day. During recovery, he stated that he saw no visual evidence of CD during the procedure. Imagine my surprise when, ten days later, his assistant called me and told me that two of the three biopsies taken showed active crohn's in my colon, and the Prometheus Labs series all showed positive for CD as well. They put me on 9 mg of Entocort and 2.4 grams of Lialda per day. I have had very limited improvement on these. Oh, and he also put me on a 14 day course of Xifaxin after I had told him about the three wonderful days I had had from the Levaquin. The Xifaxin did nothing.

I have had some improvement: I'm down to about 4-6 BM's per day, compared to 12 per day prior to the Lialda and Entocort. However, this isn't good enough for me to return to my job (I'm an airline pilot, and the FAA requires complete remission to return to flight status). Every BM for me is still very crampy; never the normal urge to go, it's always immediate and (as stated) crampy. I still get D about once every four days.

So now I don't know what to do. My opinion is that we need to continue to look for CD locations. I'm thinking small intestine involvement. I really would much rather look for other disease locations than go to the next step up in the CD chain of meds. Possibly the "swallow the camera" procedure? Also, is three weeks long enough to really get the full benefit of the Lialda and the Entocort? I'm also thinking that maybe switching to Pentasa instead of Lialda might be a good idea since Pentasa treats the entire length of the GI tract downstream from the stomach, where Lialda is colon-specific.

What I think is odd is that he had me do a gallbladder ultrasound followed by the gallbladder nuclear medicine procedure. I'll get the results of that test today at my GI appointment. Doesn't it seem odd  that he's jumping at the gallbladder when I've never really had gallbladder symptoms? I'd much rather be throwing money at tests that could find CD in other locations than GB tests.

I dunno. Maybe I'm just getting impatient since I'm off of work until I can get this figured out and in remission, and I'm just anxious for him to get the relevant tests done quickly since every day is lost pay and I have a family to support.

Edit: Sheesh, I got so wrapped up in everything, I forgot to ask...has anyone had much benefit from taking "probiotics"? Specifically, I'm thinking of asking my GI if it's ok if I try VSL#3 for a while.

Post Edited (CrohnsDaddy) : 11/6/2007 12:27:12 PM (GMT-7)

Hey FitzyK23,

I'm already a co-pilot. :) It takes many years of service with an airline to get to Captain status. Yes, I do fly for a major airline. I haven't been with them long enough to qualify for much in the way of disability or sick time. The only thing I get is Pilot Mutual Aid. It helps, but it's not what I was making flying the line.

As far as flying anxiety, I've tried talking to many people about it over the years. I commute to work, so I'm constantly in the back of the aircraft (in uniform) listening to other passenger's horror stories, lost bags, complaints, missed flights, bad weather experiences, fear of flying, etc. While I do try to listen to each one as sympathetically as possible, I must say that I'm a pilot, not a therapist, and not only do I get tired of listening to the tirades, my ability to help hasn't been great. Especially when it comes to fear of flying. It's kinda like this.... I try to explain what it's like to have Crohn's to my wife. While she generally nods and says "uh huh", she can't really understand what it's like unless she could "walk a mile in my shoes." The same can be said of the fear of flying. I grew up flying on airplanes. To me, it's just as natural as getting in a car and going for a ride. So it's very difficult for me to relate to someone that has fear/anxiety about flying when to me it's like breathing air; it's hard to tell someone how to get passed a problem that I simply can not relate to. about the only advice I can offer is to get on the airplane, enjoy the ride, and do it as frequently as you can. That which we are familiar with becomes harder to fear.

Well, I'm off to my GI appointment. :/

Crohnsdaddy, are you familiar with MAP? Maybe that's why you felt wonderful after your 4 days on Levaquin. Here is a 2002 radio broadcast from NPR that explains MAP and Crohns....still controversial, but this is interesting! Have a listen!


http://www.npr.org/templates/story/story.php?storyId=1147007

Thanks Crohns Daddy. I totally understand. My questions were less about fear of flying and more about fears of always having access to the bathroom. I get nervous as you understand thta we would be stuck on the tarmac or something or in a holding pattern before landing, when I have to "go." But, don't feel like you need to counsel me on this because I understand how sick of talking about flying you must be. I hope your appointment goes well and you can be cleared to fly soon!!! What will count as remission? Your doctors word, an airline doctor? I call myself in remission but I still have to urgently go at times.

Wow, absolutely great information everyone, thank you very much. It looks like I'll be adding probiotics to the arsenal tomorrow. That audio presentation on MAP was extremely interesting. Hopefully his research will result in better quality of life for all IBD sufferers.

The GI visit went well. He's switching me from Lialda (which treats the colon only) to Pentasa (which releases Mesalamine to the entire GI tract south of the stomach). He also put me on Celebrex for my back, elbow, and knee pain, then Lunesta for the insomnia caused by the Entocort. He also said he was very encouraged by the results I had gotten so far, and that it wasn't uncommon for Entocort to take a full six months to see maximum benefit.

FitzyK23, I apologize for the misunderstanding. I can completely relate to the feeling of being trapped on an aircraft without immediate restroom facilities available. It's even worse to be trapped in the front office! There have been a few times when I was literally gasping for breath because of terrible cramps and wondering if I was going to make it to the gate before I came uncorked. Luckily, I've made it every time, but the last experience was the one that finally made me stop flying and call the GI. Flight attendants must (by law) remind everyone to observe the Fasten Seat Belt Sign, but ultimately it's up to the passenger to decide whether or not to comply, and let's face it... when a cronnie has to go, a cronnie has to go, Seat Belt sign be darned! :)

Wishing everyone the best of health...

--CrohnsDaddy

I take probiotics, along with MSM and vitamin A (fish oil type, not beta-carotene). It has helped me a lot. Now experimenting with low-dose naltrexone - I'll wait another month before I report my results with that. If you're a coffee/tea/cola drinker, I suggest you stop.

regards,
Robert

Hey CrohnsDaddy- thanks for the response! What fun we have. I saw great improvement in my disease after switching from Asacol to pentasa so I hope it helps you too. Also, when I had a really icky flare, entocort snapped me out of it after a couple months of treatment. I am one of the weird few who had a bad withdrawal from it as well as experienced some of the side effects but I would take it again in a heartbeat if my disease got that bad again. I am more or less in remission now. I still have to take my meds, watch what I eat, and go when I gotta go, but Im healthier than Ive been and I think the meds are to thank for that. Hope your flying again soon!!!