I’ll Be Dangged,
It’s been a week already since my last post called The Gastro Doctor Rap. I’m sorry to say, but no video this week, but another’s coming soon so hang in there.
So to do a quick recap, I had a pretty incredible doctor’s visit two weeks ago now, with a great gastroenterologist near where I live. The city of Oakland, California to be exact. The purpose of this doctor visit was to meet up and chat, and let the GI know I wanted to get a colonoscopy sometime in the near future. Nothing urgent because I don’t have any UC symptoms, but since it had been almost 4 years since my diagnosis I wanted someone to take a peek inside the deep dark doodie hole and see what’s really happening.
What was pretty cool about this doctor visit is where our conversation took place. Instead of sitting in one of those lame ass exam rooms like so many people do, he led me into his office and we sat around his desk.(Almost all doctors have an office, so if it’s an option for you too on your next visit, request to chat in the docs office instead…) I wasn’t putting my shoes up on his desk and full on relaxing back in the chair, but it kinda felt that way. I let him know that I was interested in having a colonoscopy in the future, AND that I had a pretty big list of questions I wanted to ask. He told me to shoot away with whatever I wanted to ask. So that’s how the visit started out.
(One quick note, had Michaela not been in school, I’d have brought her along, she’s not only my wife, but she’s also pretty darn smart when it comes to UC. Although your spouse, mom, pop, brother, sister or whatever might not have UC, if they live with you, they probably have some questions for your GI too. So no shame in bringing them in if you all are comfortable with that.)
For those of you who have read Feeling Crappy to Feeling Happy, I make a big point within the book about the importance of writing down all the questions you want to ask your Gastro doctors BEFORE you go to your next appointment. And that’s what I did.
I brought my big notepad that had a full page of questions, with lots of space below each question for me to write in the answers as the doc rattled them off.
The Exact Questions I Asked my new Gastro Doctor:
- What are the best medications longterm with the least side effects?
- Prednisone…How do you recommend tapering off prednisone once you’ve started it?
- Fecal Transplants…What are your thoughts on them for C-diff compared to Ulcerative Colitis?
- Can I video record my colonoscopy procedure for all the folks at iHaveUC.com to watch?
- What type of prep options are there right now for the colonoscopy?
- How often should I be having an ass-probing scope?
- Probiotics? What are your thoughts on them?
- Hemorrhoids– how common are they for people with colitis?
So that right there was my list of questions.
No rocket science, just some simple questions that every GI doctor should definitely have some opinions on. I’m sure that some of you have asked your GI’s some of these exact same questions before too. And I’m hoping that some of you reading this post are thinking up some questions you want to ask your GI doctor the next time you see him/her AND you are writing them down on paper so you don’t forget them!!! Come one now, don’t make that mistake and forget all your good questions when the opportunity presents itself, WRITE DOWN YOUR QUESTIONS BEFORE YOUR VISITS!!
- I was a tiny bit surprised by his answer on this, but he felt that Rowasa Enemas were a great solution to flare ups. With nearly no side effects. The thinking behind this being that often with UC’ers, you get inflammation towards the end of your pipes, and by doing the enema dance, you can actually put the medication right on that spot pretty easily. (easily…OK, you make the call on that). Although I’m not using any medication to treat my UC, I definitely remember being prescribed enemas when I was really sick 3 years ago and I also remember only using them a few days before throwing in the towel. What can I say, I would squirt the bottle in, and poop it out moments later. So I never was a pro at enemas, but I think that moving forward, if a flare comes up, I’d be more than willing to try the old enemas again, especially if it was a flare up that I couldn’t wack with going back to basics on the SCD diet I follow.
- Prednisone tapering…. This is obviously a controversial topic, and I’ve heard so many different tapering ideas from GI doctors and from other UC’ers I’d need one of those extra big calculators to add up all the different ideas. But either way, the doctor I met with told me that for a small dose of prednisone/prednisolone maybe 20-30mg or less, a quick taper is definitely doable. But for larger doses, a much slower taper is usually the most beneficial. This is pretty interesting because in the few times that I’ve used prednisone since starting the SCD diet, I’ve always tapered very slowly even with a slow dose starting at 15mg for example…
- Fecal transplants (sometimes called FMT or Fecal Microbial Transplants or other similar terms or phrases – basically taking someone else’s poop and getting it up into your colon), a topic that is coming up more and more on iHaveUC… As you might remember, the reason why I chose this doctor for my colonoscopy is because I had a feeling he was more into “alternative medicine” for colitis compared to the average GI. And I was most definitely right. This doctor, Dr. Neil Stollman knows a CRAPLOAD about Fecal Transplants. He actually just finished some research papers that he said are now published on PUBMED about a study on fecal tranplants. Some VERY GOOD NEWS too for patients who come down with C-diff. (As you might remember, I was one of those unfortunate patients back in my dark days after my diagnosis when I tested positive for the nasty C-diff bug.) Anyways, he told me he was very confident that Fecal Transplant is an excellent therapy for C-diff patients with a 90% or more success rate. That is HUGE! As for using fecal transplants on UC’ers, he was not sure yet. Not nearly as much data in, and his initial thoughts were that for UC patients the symptoms would probably keep on coming back unless you kept on doing the fecal transplants over and over again. But either way, I was pretty pumped for the good news concerning C-diff which so many of you have written to me about with much concern. C-diff can get very nasty very quickly, and unfortunately it is one of those additional things that UC’ers sometimes get stuck with. The antibiotics which are the go-to treatment currently are often very effective, but if you are like me and want to minimize your antibiotic use, fecal transplants sound like they just might be an even better answer. Pretty cool eh!
- This was the quickest question he answered…”Yes you can video your scope Adam”. But, he did tell me that he felt it would be hard to capture it well with me recording the TV screen he is looking at, and alternatively he thought it would be best if he just shot a crap-load of pictures with his camera which would come in much better resolution than my video recording. So yippie, you all will get to see my insides one the big scope day comes…if you are interested in what the pipes look like from the inside…(And NO, I won’t be offended if you have absolutely no desire to see that stuff:)
- When I asked about my prep options for the colonoscopy, he told me there were several. I guess I was hoping for some ideas on a natural type of preparation instead of having to pound a gallon of that nasty stuff and pooping my brains out all night. Actually, I was most worried about the ingredients in that medicine. I’m not one to be drinking things that I don’t know the exacts on the ingredients, and I was worried I might be taking in some sugars that are off limits to me. He was pretty cool though, he brought me over to his “drug closet” (that slang for the closet that the drug reps use to drop off samples. All doctors have a drug closet, so who knows, maybe some of you who are taking medications can make use of the freebies in the drug closet at your doctor’s office) and pulled out a big “MoviPrep” box and handed it to me as a present. Pretty cool in one way since I don’t need to buy one from the drug store which will save me a few bucks, but I’m still a bit suspicious as to what’s really inside this stuff. Maybe some of you have some good ideas on natural preps that don’t involve medications/creepy solutions…??
- He felt that I should be getting a colonoscopy once every 2 years from here on out. That was pretty much in line with what I had expected. For those of you who follow the site for some time now, we’ve had quite a few good discussions on this exact question and again, you’ll probably get a different answer from everyone but once every 2ish years sounds good to me.
- Probiotics… His answer was pretty interesting on this too. And let me just add that when I initially told the doctor that I use the SCD diet to treat my UC, he whipped out the Breaking the Vicious Cycle book and threw it down on the desk in front of me which was pretty damn cool to see. Anyways, this doctor has a good doctor friend who works for the Mayo Clinic and specializes in researching probiotics. INCREDIBLE RIGHT?? The long story short is his friend believes that Kefir is the best probiotic, and that’s what he told me as his answer. I mentioned how VSL#3 seemed to be one of the most popular probiotics from the 129 Patient Probiotic Survey we ran a few months back and he wasn’t surprised but he stuck to the research of his friend and the Kefir. Anybody use kefir? When I told my wife his answer to that, she started pulling the “I told you so…I guess they are chowing on alot of Kefir over in the Czech Republic…??
- OK, now for hemorrhoids. I hate writing and saying that word just as much as anyone. But if you are like me and thought that the bleeding you initially had before your diagnosis was just hemorrhoids, you probably have thought about them before, maybe even researched them on the internet too. Well, some good news and some bad news on these. The bad news is that the doctor told me they are very very common for people with UC. Very common. The good news is that he felt they were nothing to be too concerned with. He explained to me how the average colitis patient simply makes use of their butt much more than a “normal” person. And often this leads to stress of the veins in the doodie hole region (both inside the doodie hole and on the outside of the rectum). And, as you guessed it, this can lead to bright red blood bleeding. I’m guessing I’m not the only person who has felt like you are symptom free and pooping rock hard poops and every once in a while you notice some bright red blood on the toilet paper. Well, I’ve had that happen before, and it always puzzled me. I don’t know for sure, but after talking to the GI doc, I’m thinking it just might be some come and go hemorrhoids. They definitely are one of my family’s deep dark secrets, I know that they have hit my family for many generations and it seems like I didn’t avoid them either. But could be worse right!
So that’s the recap of the questions. There is one pretty big part of the visit that I have not shared with you all just yet, but I will soon. It’s a totally different topic that came up and no need to start that fire in this posting. But believe me, there is much more to the story.
I’ve got a colonoscopy scheduled for the end of September, just a few months from now, and I’m pretty pumped to get it taken care of. My guess is that everything should look pretty normal, but either way, 4 plus years I feel is probably too long to go without getting the cameras all the way up in there.
Take care of yourselves everyone. For a bunch of you it’s summertime. Get outside, get your camping gear together, and bust out the BBQ.
For everyone who is recently diagnosed with ulcerative colitis and the same goes for family members of these special folks, don’t trip out. UC can be really really tough, but it sure as hell is not even close to the end of the world. There are many different treatments and therapies that work really well for UC and a great life is most definitely possible.
-author of “Feeling Crappy to Feeling Happy”
So I like UC’ers. That’s been going on since 2009 I’d say.
I started site and the eNewsletter(you can join that below) shortly after being diagnosed with ulcerative colitis in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
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