What is it about Mondays?

I had an appointment with a brand new doctor today, a gastroenterologist. I am going to go out on a limb here and say that no hilarious story ever starts with the word “gastroenterologist” in the first sentence.

I took some awesome pictures while I was waiting in the exam room, though. Maybe when this is all said and done, I’ll do a one woman photography show entitled, Pictures I took in Exam Rooms While Waiting to See Doctors. You will, of course, want the oversized, four-color coffee table book that goes with it.

So, it turns out that it took a long time to diagnose my diseases because my symptoms came all backwards and out of order. I can officially tell you that I have Crohn’s Disease, with a possible side of Sarcoidosis*. On Friday, I’m having a colonoscopy and an endoscopy to check for granuloma.

I have spent a lot of time trying to figure out how I am feeling about all of this and I can honestly say that I am simultaneously relieved, embarrassed, pissed off and excited.

I’m relieved that specialists in their field’s have found incontrovertible medical evidence that there is something physically wrong with me. One of my biggest fears was that I would end up with no diagnosis or end up in one of the catch-all categories that sick people are put into when no diagnosis can be found. I think that would be terribly frustrating, and that I would worry that people didn’t really believe anything was wrong with me.

I’m embarrassed that at least one of the things wrong with me has to do with digestion. I’m a bit of a prude when it comes to bodily functions. I generally don’t find fart jokes funny. Crohn’s Disease is pretty icky. I figure posting photos of a digestive tract here is step one towards getting over this.

The anger isn’t anything specific or intense, just a general feeling that I have Things to Do and this isn’t something I have time for. “Why me?!?”, etc.

Mostly though, I am excited that I am starting treatment on Monday to get all of this nonsense under control. I’m going to be taking injectable drugs called Tumor Necrosis Factor Blockers along with some drugs that make them work better. Hopefully I’ll be in remission quickly and then it’s a question of staying there. That’s all really good stuff.

I have received so many lovely, supportive emails from blog readers who are worried about me and my weirdo health, so I wanted to post an update here letting you know that I am okay. I’m on the road to Wellville. This feels very much like the beginning of something good.

* My gastroenterologist asked me if I’d ever heard of Sarcoidoisis and I was like, “Um…yeah. About once a week on House. It’s always the first thing they rule out in the dying guy.”

35 Comments

  1. Well, I’m super-sorry that you have found out you have these issues (I’m with you – prude-like to the extreme and a digestive disease would be just about the worst), but I’m glad for you that you have found a cause for your illnesses. I’ve been on a similar journey over the last year, and have yet to find out what’s wrong with me. I have yet another doctor’s appointment with yet another new doctor in a couple of weeks – here’s hoping she’ll be more help than the last three!

  2. well
    good news?

    best news is you will benefit greatly from going off all wheat
    white stuff (yeah that includes SUGAR)
    and
    most likely all grains and beans as well

    more best news ? you’ll feel better
    and your symptoms will wane

    there’s lots of valid evidence based research
    that’s been done
    and many people with glowing results.

    i NEVER thought i’d go off grains beans and it’s honestly (from a fellow foodie) not that hard.

    just saying
    take it as you will
    and take it ‘teasy.
    lotsa love
    rona

  3. My always before healthy brother was diagnosed with Sarcoidoisis when he returned from fighting on the ground in the First Gulf War. (Don’t tell me there is no connection.) Anyway he was treated and I’m not sure of the details but the important thing is that he has had no recurrences. I’m so glad you have a treatable diagnosis. Fingers crossed that the colonoscopy holds no surprises. (And its true that the prep is SO much more difficult then the test itself. You will be clean as a whistle and ready to start fresh. Sort of speak. :))

    • Susan

      November 26, 2012 at 7:27 pm

      Weirdly, I’m kind of excited about the Tabula Rasa aspect of the prep. Like I should start an all organic regime afterwards, or something.

  4. It may be true that no hilarious story every starts with the word “gastroenterologist” in the first sentence, but there’s a great one that has “colonoscopy” in the second sentence.
    http://www.miamiherald.com/2009/02/11/427603/dave-barry-a-journey-into-my-colon.html

    I will tell you that my sister says she never had a sleep as good as on the “c” table and she didn’t want to leave. Me? Not so much, but no real problems, either. One hint: if you have to drink the gallons of liquid laxative, like EZprep (yep), ignore the flavor packets and instead have fresh limes on hand, wrap a half in cheesecloth to avoid swallowing any pulp or seeds and take a squeeze of lime juice before each glassful. Much better than those awful sweet icky artificial flavors.

    Also, sadly I didn’t lose weight. I would say that was impossible, given the prep procedure, but don’t believe those TV ads that say you carry around 20 pounds of gross stuff in your colon and should clean it out regularly.

    Good that you have a clear diagnosis and can get on a healing road. Tabula rosa, indeed.

  5. Wellville is a wonderful destination – may you arrive very soon!
    xoxoxo

  6. Chickadeeworkshop

    November 26, 2012 at 8:42 pm

    Honest answers are a good thing , because it means you get on with the healing. Amen.

    The absolute BEST exam room wall I’ve ever seen was last week; the immediate care facility had a MURAL map of the world. I’m a map geek and I just sat there studying it for 15 minutes. It was way cool. I do enjoy studying the human anatomy diagrams, though, which are sort of….maps, right?

  7. Hi Susan, glad you’ve got a diagnosis. I’m finishing a certification at the Institute for Integrative Nutrition and we’ve hit on Chron’s Disease many times. You might want to consider dietary changes before going for drugs, though, because this is treatable with just diet. For example, consider the GAPS diet. Add probiotics and lots of fermented foods into your diet. You need to get your digestive system sorted out first because 70 percent of our immune system is tucked into that system. Here’s a website on the GAPS diet: http://www.gutandpsychologysyndrome.com/gaps-diet/

    • Susan

      November 26, 2012 at 9:00 pm

      Thanks for the links, Kelly! I am wide open to modifying my diet. Sadly, I think it will have to come after the injections, since I’ve already lost 30 pounds in two months and the docs seem to think it’s pretty urgent to get this shut down ASAP. But I would love a non-pharmacuetical approach and will bring it up on Friday.

  8. You should go to the Yahoo group for Erythema Nodosum. This my autoimmune support group. I have seen a lot of mention of Crohns and Sarcoidosis that many find accompanies their EN. They have a lot of info at this group. Info on weird stuff and how it all may be connecting. Best wishes to you with this new information flow.

  9. Hi Susie, glad you have a dx and can start moving forward on doing something about it. That alone will make you feel better. Don’t worry about the colonoscopy–I guarantee you’ve been through much worse. My dad died of colon cancer, so I’m about to have my second one even though I’m only (!) 52. No biggie, really–my doc kept me awake (though sedated enough not to care) through the whole thing & let me watch on a screen–pretty cool if you like that kind of thing . . .

  10. So sorry for the journey and hope you are feeling better soon. Its amazing what a diagnoses can give you as far as a connection to that community which leads to knowledge and more help. best wishes.

  11. I am so glad you got a diagnosis. There is nothing worse than being sick and being dumped in a probably catagory or feeling like Doctors think it is in your head. The prep is not fun but Dave Barry makes it hilarious. I know you can change your diet and I am positive you will share some great recipies.

  12. Are you sure it’s not lupus?? (House reference). Aaron does the GAPS diet – he brews Kombucha as part of it. It’s really good! I’ll bring some down. So glad you have some answers!!! Heal up!

  13. Wow Susie – you have been on a medical adventure. I hope that the doctors can get things under control now that they know what’s going on! Wishing you the best of luck with your health!

  14. I don’t have anything like Crohns but have had digestive issues – majorly. And I have to say that kombucha has been wonderful – (an easy probiotic/fermented drink to make. And I went Gluten free (BROW diet -no barley, rye, oats, wheat-on advice of a homeopath). Its been wonderful. Since I don’t like store bought GF bread and am lazy about making it I actually don’t eat many grains. I feel so much better. So I agree it would be a good place to start by eliminating grains — and beans. Actually I can eat oats as long as it is guaranteed processed on a dedicated machine for oats (Bob’s Red Mill is). Hoping and praying for a fast recovery for you and easy transition to a different way of eating healthy.

  15. Also, there’s a really hot ex-DC United player who runs a Crohn’s advocacy/awareness campaign … :)

  16. I’m so happy to hear that you received a diagnosis. I’m sure a weight has been lifted! I’ve heard remarkable things about the GAPS diet too. I loved seeing the pics and diagram of the gastro tract…so many nooks and crannies! Good luck on Friday!

  17. Ok, he’s not THAT cute (had to Google him again, of course!)

  18. Just make sure you have absolutely no commitments or reason to leave the house on the day you take the colonoscopy preparation! Be near a loo at all times and be prepared to see the funny side. In the end, I spent my day intermittently on the loo and on photoshop, doctoring the packaging for “KLEAN PREPP” so that it read “KRAPP PREPP”. It doesn’t sound like much but I got a lot of necessary laughter out of that…

    …I have heard great things about the use of the anti-TNF drug for Crohn’s disease. I take a weekly injection for my arthritis and it is absolutely no exaggeration to say it’s given me my life back. It used to take me 40 minutes sometimes to dress and now I barely even have to think about it.

    I am delighted you have a diagnosis and a treatment plan, nobody likes to be stuck in no-man’s land with an unspecific medical condition… I love the Colon pictures!

  19. so happy you are on the road to health. stay on that path and to a happier/healthier future! mazel tov

  20. tell the truth, did you snag the plastic colon? Glad to hear of your trip (to Wellville), hope you find a short cut and can stay there a while!! (sorry, no words of wisdom, my mom gave me an iron cast stomach..)

  21. A diagnosis is good–once you get over the annoyance that something is wrong, it’s easier to deal with the cure. My niece had issues when she was 10 and had a pediatric gastroenterologist she visited for many years after surgery for her issues (yup, there are special ones for kids). Now, symptom free, her current doctors wonder about her diagnosis, but admit that something was wrong with her that needed immediate attention. Her issue had impacted her liver and she was on a transplant list for that for a brief period. The fact that she has no issues now is a good thing. The good news, at 32 she is symptom free, she will be having her first baby in January, something she wasn’t sure she’d be able to do when she was younger. Now I’m off for routine blood work—take care.

  22. Oh goodness, I am so happy to hear you have a diagnosis! I have two friends with immune related digestive issues and you CAN get your life back. They’ve both been able to manage their diets.

    I wish you a speedy recovery, Susan! You can do it! Tabula Rasa and a fresh new road ahead!

  23. The photos were wonderful! When I go to my Urologist, I get to see those 3-D thingies of the Penis. And all the other bits around it. I wonder if the doctors think it makes us less anxious? It is good to have a diagnoses. Be well!

  24. Truly bizarre – from The Bloggess’s blog just a few days ago:

    “my rheumatoid arthritis has gotten much better in the last year because I started taking a monthly “injectable tumor necrosis factor blocker“,”

    http://thebloggess.com/2012/11/oh-what/

    Hope it helps you out too!!!

  25. It is always better to have a diagnosis! At least now you can start combating this thing. Hope you are better soon.

  26. I thought the same thing about sarcoidosis! But as far as Crohn’s, my mom has it, and while she’s always been stubborn about diet and treatment (and, well, everything), there are quite a lot of resources and options out there. I recommend the Crohn’s and Colitis Foundation of America for info. Best of luck!

  27. You weren’t kidding when you said in a past post that autoimmune issues travel in packs. Glad you have a diagnosis! Like a previous commenter said, my colonoscopy was the best nap I ever had. The prep was less traumatic than my usual intestinal day-to-day issues (and I used to live in Africa so that’s saying something). I, too, take an anti-TNF injection for my arthritis (Humira, but I’ve also been on Enbrel), and it is amazing. Without it I cannot get out of bed. You will feel better soon and enjoy a new normal. Thanks so much for posting this–it’s great for me (and others, I’m sure) to know the real happenings of people we’re fond of through their knitting/fiber exploits, and to also know that there are others out there like me. Comfort in numbers :)

  28. So happy you’re on the road to recovery Susan!

  29. Sounds like you have a Dr. that is really paying attention. Wishing you the best. I think you are amazing in your persistence, and able to also run a a great business at the same time. Thanks for sharing.

  30. re-reading and realizing i mis-read
    and then read up more on sarcoidosis (which i recall from school but haven’t seen since)
    omg 30 lbs on your small frame in such a short time is a huge loss
    you might want to ? TRY ?
    adding in some (organic) coconut oil which is very helpful for many things
    and another tasty caloric delight would be some marrow bones (don’t eat the bone part … just the marrow as u well know!)

    mostly
    sending u BIG GIANT LOVE and HEALING
    i hope the meds knock the socks off the sarcoidosis and give you respite from the chronic irritation and agitation your body’s gone through.
    power to the susan!

    xoxoxo

  31. I have lupus and Crohn’s. The person most likely to get one autoimmune disease is the person who already has one.

    That said, I was in my rheumatologist’s office once and picked up their New Yorker magazine, old of course, and flipped through. And there was a cartoon: well dressed man and a woman in a Little Black Dress and heels, holding their cocktails, the cityscape in the window, and she demands: Tell me. What on earth possessed you to become a *gastroenterologist*?!

    So, I guess, reading your post, it’s all about the pretty pictures you can put on your office walls. Heh. Seriously, though, I’ve dealt with Crohn’s for 13 years now; if you need anyone to talk to, I’m here, any questions about what it’s like to be on various meds for it from the patient’s point of view, I’d be glad to help if I can. Hang in there.

    Oh and. There’s a young former cancer patient at Stanford who volunteers a couple days a week by playing the most incredible piano in their atrium, uplifting, wonderful, creative music, welcoming all who pass through those doors. I knit something for him and he mentioned something about his wife–and so, wanting the best of the best, something soft, impressive, exquisitely knit–I used your merino silk laceweight, a fabulous yarn. It’s all done, I can’t wait to give it to him.

  32. p.s. My opinion, and let your doctor take it with grains or pounds of salt as desired, is, I’ve been on Remicade and Humira. Don’t let the insurance company make you settle for Remicade; it’s mouse cell based, and Humira is human cell based and less likely to cause problems.

  33. Susan. Congratulations? My fella was diagnosed with Chron’s Disease a few years ago. (His is relatively mild from what I have been reading.) It turns out that there seem to be a spate of symptoms and everyone is different. So, don’t give up when one thing doesn’t work. What works for others may not work for you. Keep trying and asking questions. Hang in there and don’t give up!

    Remember, you seem to have hordes of people who want to help you and reducing stress seems to often be a major help in all health issues!

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