Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

What My Gastro Doctor Told Me

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.

Peoples Park Bathroom Murals

this picture I shot recently, not related to this post other than bathrooms (which I guess is pretty much related to every post on the site) But this is one of my favorite public bathrooms
People’s Park Berkeley, California.

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:

  1. What are the best medications longterm with the least side effects?
  2. Prednisone…How do you recommend tapering off prednisone once you’ve started it?
  3. Fecal Transplants…What are your thoughts on them for C-diff compared to Ulcerative Colitis?
  4. Can I video record my colonoscopy procedure for all the folks at iHaveUC.com to watch?
  5. What type of prep options are there right now for the colonoscopy?
  6. How often should I be having an ass-probing scope?
  7. Probiotics?  What are your thoughts on them?
  8. 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!!

 The Answers:

  1. 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.
  2. 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…
  3. 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!
  4. 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:)
  5. 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…??
  6. 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.
  7. 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…??
  8. 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!
Colitis Adam on the beach in Mexico 2012

Here’s a picture of me from earlier in 2012 down in Mexico cranking out my new shirt that Michaela got me for a present. It was great to be down in Mexico medication free and feeling good once again! I’ve cut my hair big-time since this picture.

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.

-Adam

-author of “Feeling Crappy to Feeling Happy”




c-diff, fecal transplant

29 Responses to What My Gastro Doctor Told Me

  1. Midwest Dave
    Dave June 22, 2012 at 7:20 pm #

    As always, much appreciate the information. Thank you for your work. Thank you very, very much.

    • Adam
      Adam June 22, 2012 at 7:22 pm #

      Dave,
      Way cool of you to throw such a cool comment out there like that. Muchas Gracias!:)

  2. Livia June 22, 2012 at 7:35 pm #

    Wow, You seem like you found an amazing doctor!
    I have been drinking kefir daily for 5 months and it helped tremendously with UC symptoms, so I think your doc is right about that. You have to use the real kefir grains tough, not the powder sold in health food stores

    • Adam
      Adam June 23, 2012 at 9:27 pm #

      Hey Livia,

      Way way cool that you’re already busting out the kefir and getting some good results from it. That’s great news, and I’ll definitely share that with my doc when I see him next! ( I think you should be on a kefir commercial right!!!:)

    • ann August 7, 2012 at 1:44 pm #

      Livia,

      It’s so encouraging to see Kefir might be a good help for us. Could you recommend some kefir starters and how you make them? I think homemade yogurt might be a problem for me since the I doubt I have allergy to casein.

      Thanks so much ahead and wish you good luck,

      Ann

  3. naomi June 22, 2012 at 8:00 pm #

    Thanks Adam! perfect timing for this post, I am barely getting over my first major flare up since my diagnosis last May and had my follow up appt today. Im tapering off 40mg of Prednisone in a week to 5mg less each week until im out. Hopefully this sends me back into remission for a loooong time! I am also taking 3g of Azulfidine daily. I asked the PA when I should get my next colonoscopy and she said 7 years?! I thought that seemed too long but she said she would talk to my doc and see if thats the case for me since I waited tooo long to see her with this flare up and did some damage.I like your docs suggestion of every 2ish year :) Good thing is i just became a nurse this week, started my new job and can finally put the books down and focus on my health and get health insurance! Paying cash for UC visits,meds, and labs is no fun! I was under some major stress during nursing school and its probably what led to the activation of UC :( Thx again for this useful information!!!

    • Adam
      Adam June 23, 2012 at 9:31 pm #

      What up Naomi,

      Wow, 7 years… yeah that sounds a bit long to me, but will be interesting what your doc comes back with.

      I wish you the best with your prednisone taper, that stuff can be super tricky, but sounds like you got a good game-plan.

      BUT MOST IMPORTANTLY………Congrats on getting your “NURSE” ON! SUPER FRIGGNIN NICE!!

      Where are you nursing at?? I want to come in, as long as you don’t poke me with a shot or two right::

      And, of course you must be cranking a huge sigh of relief to get on the health insurance plan again. I’m lucky to have been insured all through my dark days of severe UC, but if I wasn’t i’d for sure be in the poor house for a very long time.
      take care,

      -Adam

  4. Jim
    Jim June 22, 2012 at 9:29 pm #

    Whats up adam? long time no speak. This post was really inspiring. Next time i go to my doc im gonna have questions ready for him. Ive had questions before for him but most of them have been either forgotten or watered down due to my forgetfulness. Its like going to that great record store that has everything without writing down what you need or want. Im really surprised about this GI’s confidence in non-RX treatments…they’re very difficult to find on the east coast. But this post has got me thinking about re-trying scd now that i have control over this nonsense.

    as always, thanks man

    • Adam
      Adam June 23, 2012 at 9:34 pm #

      What up East Coast Jim,

      Crazy thing, this doc is from your side (NYC) and then moved over to the left coast after finishing up med school. So docs like this have got to be out there too. You know what, I’m already getting my list of questions together for him for the next time we chat, and I’ll see if he knows of his own list of alternative-med GI’s out your way. Heck, who knows, there might be that mystery list out there somewhere after-all.

      Best of luck to you however you move forward with your UC, and of course wishing you the best from Berkeley.

      -Adam

  5. UC Family Boy
    uc family boy June 23, 2012 at 5:28 am #

    Very very helpful, thnaks. I like the list of questions. I have my GI appointment end of next month and shortly after I have my first ever Colonscopy (scary), so this thread was prefect as I thought ‘what should I been asking’. Now I can add some sensible questions to my list!! As always a great site with useful info

    • Adam
      Adam June 23, 2012 at 9:36 pm #

      Yo Family Boy,

      Good luck with the butt probe, I’m sure it will be a piece of cake, so don’t sweat it.
      And for sure I’m pumped to hear you’re thinking up some good questions to drill your GI on.

      Super glad you picked up on that, basically that was the point on the long winded post, so right on buddy!

      -Adam

  6. Bev June 23, 2012 at 2:02 pm #

    That’s for sure, Adam! UC is NOT the end and there are many different things that you can do to ease having this disease! Great things, in fact. Easy things. Things that actually work!++

    This was one of your best posts yet. The questions and answers were really eye opening and awesome at the same time! I’ll have to check my probiotic to see if there is kefir in it. Probiotics sure got me into remission, and I am so happy to hear from an actual GI that they can work!

    Also, that hemorrhoid thing that you asked helped me immensely. Now that I am ‘solid’, every so often that bright red reminder is there, and I kind of figured as much!

    Cheers, and thanks for sharing it all with us…you know that we hang on your every word…

    Oh, btw, didn’t the doc offer poco-silex as a prep for the scope? It’s so easy to drink, and, therefore, probably not filled with all kinds of bad stuff?

    Cheers:)

    • Adam
      Adam June 23, 2012 at 9:41 pm #

      Bev from the North! Are those northern lights shinning on you guys up there tonight?!!!

      Always good to hear from you, espeically since I can see your picture everytime!!(Thx for hooking that up btw)

      You know what, I don’t remember him mentioning the Pico-Silex. I myself haven’t heard of it, but dang, that sounds like a good thing to put down on my list right….!!!

      Happy as hell you liked the reading, that’s great, and you know I value the crap out of every word you say/write here as you are for sure one of the most loyal users of this site and that’s so way cool. I’d be lying if I said I wasn’t hoping you’d join up with whoever else makes it to Vegas in December for the Crohn’s and Colitis Half marathon….Bev…come on…don’t puss out on us!!!

      Laters,

      -Adam

  7. Bev June 23, 2012 at 2:05 pm #

    OOPS! I mean didn’t the doc offer you PICO-silex for the scope prep, not poco…what’s wrong with me!! Sorry for the typo…sheesh!

  8. PeterNZ June 23, 2012 at 3:05 pm #

    Mate,

    My doctors replies to similar questions:

    (1) Anything that works except Prednisone.

    There is hierarchy of drugs I have been on; 5 ASA, Colifoam enemas, Azathioprine, Methotrexate, Cyclosporin. Currently on 5 ASA and Methotrexate as a long term management approach to keep me off the Pred (the pred has apparently damaged my bones after so many years and I have to stop taking it).

    (2) One doctor has told me its fine to cold turkey ob pred. Another told me that at low “physiological” does (<7.5mg) there should be no side effects. Yet another said to taper very slowly. I'm running with the taper slowly myself.

    (3) Haven't asked.

    (4) Yep, I've watched it on the screen too.

    (5) I don't mind drinking it so haven't asked.

    (6) Yes ongoing colonoscopy to monitor for cancer as more at risk with UC. Colonoscopies are easy. Can have under general anesthetic or just some goofy drugs while awake. I've only had the goofy drugs that make the time pass really quick. Colonoscopies don't hurt.

    (7) Me "What about probiotics professor?"
    Professor "There are better things to waste your money on"

    (8) Haemorroids yes. Nothing to worry about. Can "lance" them in doctors surgery if caught within first day or 2. Otherwise they will go away in a month or 2 by themselves. Proctosedyl works to reduce the sensation.

    and of course….(9) Diet makes absolutely no difference.

    Chur

    • Adam
      Adam June 23, 2012 at 9:49 pm #

      What up Picolo Pete!

      I wish I was bull crappin you but I thought there was a massive tsunami out there in NZ lands. Where the heck you been senor!!! Glad to hear/read a comment from you (wife says same) since its almost always a good laugh and read all in one.

      Do you telling me you’ve got your ass lanced before senor? Ouuuuch… Actually I think I know what you’re talking about, my pops had a few butt probing procedures recently to get some hemmis taken care of.

      Thanks for thinking Peter, and merry winter to you and your fam down in the south hemi!

  9. Johnny Drama
    JohnnyDrama June 23, 2012 at 10:12 pm #

    Yo Adam, my main man!
    Good to hear from you again!
    This topic keeps getting juicer and juicer. You might have to start making some preview video clips for the next report.haha, I’m excited to hear the next part of the story, and even more stoked to hear how good your results are going to turn out.
    Anyways bro, I had a huge response typed up on here than my damn laptops battery died, I swear HP’s laptops have the worst quality battery’s!
    So back to the topic haha
    First off you asked some mitey fine questions and may I add this doc seems pretty chill!
    I totally pictured you putting you feet on the desk haha, I also pictured that doc opening up one of his drawers and wipping out 2 finely rolled J’s and you two sparking them up and conversing haha
    I have experienced that evil blood on the TP before, definitely hate seeing that, but always wonder if a flare is coming,It really makes me nervous, so then I start eating homemade chicken noodle soup to be safe. It does seem to happen when my stools are harder. All of us with UC love seeing thoes nice logs of perfection, but we dont want them rock hard cuz thoes suckers can do a little bit of irritation on thee ole colon,thats why we best be drinkin good ole H20. I myself have a built in camel pack in my bookbag, so Im always prepared and I got water on tap!! I highly recommend this to everyone! That h20 stuff is a good natural lube for the poo poo. Speaking of water…. what the hell is going on in Cali Adam!? I was watching the news(yes Im 21 and I enjoy the news, well I dont have cable so I dont have much choice) and I guess their some contamination going on with the tap water supply or something?! Its showed a bunch of people stocking up on water jugs. I was a bit worried about you Adam, I hope thats all fixed now! So back to the hard poo poo talk, I do think too hard of stools can cause minor hemorrhoids, well for me at least. I seem to notice if I have a long days of work outside mowing a bunch of lawns for my little lawn service that when I take a dump I have a little irritation when I wipe and it feel like a tiny hemorrhoid or something, it usually goes away in a few days. Now for the topic of the Prep Solution, my GI doc has the same little drug room, where she gives me samples of lialda and canasa, its best to check the expiration dates because all the stuff I usually get is close to expiring, but I dont know if that does much to the meds or not. Anyways I have heard of the MoviPrep shit, funny story, I volunteer and help out this gentleman who has few disability’s, and his wife had that exact stuff on the counter, she was telling me that she was all nervous for her first colonoscopy, I was totally thinking in my head(been their done that) haha but I didn’t want to bring up the UC topic to her, shes kinda cranky ole lady, but her husband is a pretty chill guy. So im guessing this MoviPrep solution is the new or advanced prep stuff on the market now haha. I still agree with you Adam about looking for a all natural solution,because I googled some of the ingredients in that stuff and Im not to fond of them. I aint no chemist,but I really dont want to put alot of that shit in my body either(especially after following the SCD religiously for a long time). So im going to keep searching that ole internet for a all natural solution. It didnt surprise me one bit about him saying getting a colonoscopy every two years, being a GI doc, thats easy cash, plus its prob good to make sure everything is safe, but I dont totally agree with him, everyones body is differnt and if your having flare off and on, its prob best to get scoped every two years or so, but for someone in a solid remission I dont totally agree on the 2 years. I swear that drinking that solution stuff and the act of getting probed up the ass doesnt go to great with the UC, and can definitely irritate it. Its just one of thoes things where its up to us, but I agree with you getting it checked out in a few months Its been 4 years and you have made a 360 turnaround from day one and I bet your excited to see the results. That kefir stuff sounds legit, I seen that at the store a while back, that should be a new topic on this site. Anyways man this response is getting way to long, so Im going to wrap it up.
    Peace out fellow UC’ers.
    JohhnyDrama

    • Adam
      Adam June 25, 2012 at 9:22 am #

      What up JD!

      Yo buddy, thanks for the response, I think that’s now offically the longest comment you’ve ever written!

      I’m definitely going to look into some non-prescribed methods of doing the bowel prep and If I get some neat ideas, Ill post them up for sure. if yo get on with some of that kefir, let me know how it goes down for you. I haven’t started in on that just yet even though my wife chows on it.

      take care buddy, and always good to hear from you!
      -Adam

  10. TiiniTete
    TiiniTete June 24, 2012 at 3:08 am #

    Hi Adam,

    Nice to hear about the Kefir as I just before coming to this site today placed an order on the cultures… Win. Also I would like to give the advise of fermented vegetables, like sauerkraut.

    Some comments
    1) I love enemas (I mean since I am sick, not in a perverted sick way..) and they work well on me, but I also only have 15 cm left of the large intestine.

    2) Prednisolon and cortison preps are going to affect the bodies cortisol production and going cold turkey on them might leave you without cortisol for a while and this is why one should taper of the meds slowly.

    5) Prep options: I haven’t used any since I was diagnosed, specially in a flare I believe it is stupid by the doctor to do ask for any possibly harmful preps. And my doctors seems to have no problems in looking at the intestines anyhow (last time though we were joking about the poop attacking.)..

    8) Hemorrhoids: Thanks for bringing the topic into the light. Such a bitch!! I found it however that by going when you need to has helped me a lot also an aloe gel.

    Thank you Adam for making it easy to discuss important pooping topics!

    • Adam
      Adam June 25, 2012 at 9:25 am #

      Thank for sharing TiiiniTete!

      Sauerkraut….sounds yummy. I actually had a whole bunch of that yesterday with some roasted beef. Yum Yum.

      Have a great week, and I want to hear how the kefir goes for you!!

  11. Maggie June 24, 2012 at 7:09 am #

    Hey, Adam, great pic. My gastro only says I have to have a coloscopy every 5 years. I had a sigmoid a couple months ago while in a flare and it made it worse but I never had to get knocked out so I watched the video, very interesting but my colon was swollen so the air she puffed in there really hurt the deeper she went so she stopped. Next time I’ll let her knock me out. The prep only started 2 hours before the procedure. I have left-sided colitis so that’s why the sigmoid. I used to drink kefir, love the taste, and would love to again but it’s expensive. Maybe I can find a recipe. Also the enemas are best administered while lying on you side in bed. I use Canasa suppositories–they work great for me. Thanks for asking your GI those questions. I would never have thought to ask about hemorroids. I was diagnosed 2x with hemorroids and later thought I was misdiagnosed but now, maybe not. I still get the bright red blood sometimes but only in the morning after my 1st BM. Thanks for all the insights!
    Maggie

    • Adam
      Adam June 29, 2012 at 9:02 am #

      Hey Maggie,

      Thanks for all your follow up on this post too. I’m gonna have to come back and read all the comments here again if I ever do start using the enemas. Also, ain’t that a trip about the hemorrhoids, I was surprised like most people to learn how common they are for UC’ers. Take care and all the best to you!

  12. shelly in maine June 24, 2012 at 12:34 pm #

    Awesome update Adam…my gastro says every couple of years-ish for us uc’ers with our increased risks. I’m filling up my 2nd punch card..a couple more and I get a free one :-) :-) kidding about the freebie, of course! Almost any prep is better than the old fleet plus the nasty fleetphospho stuff we had to drink…NASTY! Thanks as always…happy camping! Shelly

    • Adam
      Adam June 29, 2012 at 9:04 am #

      Yo Shelly,

      Awesome idea about the punch card!!! I think we should all propose that to the GI’s out there. Who knows, all the restaurants are doing it for a reason right!!!

      all the best to you adn the Mainers of the world!

  13. Mrs. Hudson June 24, 2012 at 4:55 pm #

    1. What are the best medications longterm with the least side effects? Since his case is so unique they started him on remicade which took care of the joint pain and did absolutely nothing for the uc. Now he is on IvIg we’ll see how that goes. Not working on the joint pain at all.
    2. Prednisone…How do you recommend tapering off prednisone once you’ve started it? He did the tapering off regimen.
    3. Fecal Transplants…What are your thoughts on them or C-diff compared to Ulcerative Colitis? We talked about it and that was the course before he passed out at Vanderbilt, two hours from home.
    I took out number 4. It didn’t apply.
    5. What type of prep options are there right now for the colonoscopy? GoLytely
    6. How often should I be having an ass-probing scope? 2 years
    7. Probiotics? What are your thoughts on them? Take them every day. (I don’t see any of this helping him)
    8. Hemorrhoids- how common are they for people with colitis? He has polyps instead

    Dr. Anthony Ugheoke, in Huntsville, Al is excellent. He has been handling my hubby’s case with compassion.

    • Adam
      Adam June 29, 2012 at 9:06 am #

      Hey Mrs Hudson,

      Thanks for your comments. What would be great is if you could add a doctor reveiw for your husband’s GI doc at this page here:
      http://www.ihaveuc.com/gastroenterologist/

      then I’ll add it to the big list on the site.

  14. claudia anderson June 30, 2012 at 2:03 pm #

    HI Adam~
    I am my husband’s support for UC & I found your Q’s & A’s helpful. Like you my husband (& I) started the diet while he was on Prednisone & so the results have been very good. I now make everything from yogurt to granola & am grateful for all of the wonderful resources out there that make it all possible. It’s good I like to cook! The diet parameters have made me really rethink not just trying to convert old recipes to SCD, but learn a new way of thinking about nutrition & stuff that tastes really good & fills you up!
    I wanted to comment on 2 things, 1: my elderly mother almost died from complications of c-diff, was in the hospital twice. They first gave her flagyl which did nothing, then vancomycin which slowed it. It wasn’t until I did research on it that I found the probiotic sacchromyces boulardii (sp?) might help. It did…she now takes it everyday & it has been 3 years since a re-occurance, but I think you may not be able to take it under SCD?
    The 2nd: I have read so many comments from people doing the diet that say it didn’t work for them. I have to always wonder how strict/careful they are, especially at the beginning when it is so difficult. I know most of them have no support at all & when you are feeling ill, the last thing you want to do is fend for yourself! I don’t think people really understand how much will power is involved. I know that as care-giver I did not stick entirely to the diet because I didn’t have to & I definitely had wheat cravings. I also went through the die-off, although not as severely as my husband. Doctors usually just go for the quick “fix” & simply do not educate themselves on much besides what pharmaceuticals can do. Thank goodness for the internet! So grateful for your site…it has been such a help!

    • Adam
      Adam July 1, 2012 at 6:59 am #

      Dear Claudia,

      Thanks so much for writing your comment. I really appreciate hearing from people like you who are so supportive of other UC’ers!! Way way cool of you!

      I myself have not researched c-diff very much over the years, so I was unaware of the reference you made to sacchromyces boulardii and its benefits, but that of course is great news!

      I totally agree with your point about the diet and how difficult it is to get into. I wish you and your family the very best moving forward, and so happy you are enjoying the site.

  15. Deb March 13, 2014 at 8:16 pm #

    Thank you so much for this website Adam! You are awesome!

Leave a Reply