Old Hippie, Old Diagnosis, New Resignation

Meet Beth:

I love muscadine grapes, I’ve worked on Wall Street and been on welfare, I once vaulted a 4-foot stream to get away from a bear (despite having it drilled into me that you DON’T run). I close my eyes when I dance to Orgone, and given the right circumstances I could do that for 4 hours straight. I’m 41 but people who call ask to speak to my mother, because I sound like I’m 7. I couldn’t whistle to save my life. The best things in my life are my husband and 4 children.

Colitis Symptoms:

Urgency, blood, pain (not severe, just like I’ve been sitting on concrete all day), and total self-centeredness as I gnash my teeth about where this is going.

Colitis Story:

Hi! Adam, thanks so much for this site. It’s giving me a lot of comfort these days. Reading everyone’s stories here, I realize my case is pretty mild, but it seems to be getting worse. History…Undiagnosed IBS about 1998, just gas/pain with stress, but controllable. 2002, second pregnancy, mucus on stool – OB said to wait until after pregnancy. Late 2003, mucus returns, with nightly pain/bloating/gas – saw a GI, colonoscopy, diagnosed ‘pancolitis’. Doctor: ‘I want you to take this med.’ Me: ‘Ok, for how long?’ Dr: ‘Why, all your life.’ Me: —> (Just like with the bear.) No way am I going to be on any prescription drug for the rest of my life, I thought. So, for 9 years, I manage it with diet, trying SCD (which worked, till I went off), anti-inflammatory diet, aloe vera, all the health-food store stuff. Occasionally I’d have flares, but they mostly involved bloating/pain/gas at night. The gas was the worst, because it was humiliating if I was in public or with friends. Thankfully, my husband and 3 of my 4 children don’t have much of a sense of smell. The other reminds me that even when I think it’s just a small one, it’s really not. It’s really big. ;|

But in May this year, I took some pills with iron and I think that’s what set it off. More bleeding, pain, urgency. 6-8 weeks before I could get it under control. Then, in August, I had a beer AND a glass of wine one night – I knew wine was a trigger but I’d been playing at the edge before. And since then, all the symptoms are getting steadily worse, to where I know if I eat something, I’ll be running to the toilet 3 or 4 times in the next half hour. Sharting (sorry, but that’s a lovely descriptive word) whenever I bent over or coughed.

I’m a massage therapist, too, so I could only work on a client if I didn’t eat that day…I finally gave in, after 6 weeks, and went to my primary. He was actually a really nice guy, understanding that I was wary of prescriptions, but knowing I needed something to help. Gave me Balsalazide, which I always thought was one of the 3 kings. And set me up with a GI the following week.

The Balsalazide took 5 days to show effects,

but then I was normal for the first time in months.

So I went to the GI with great hope. And it turns out, she’s one of these doctors that I spent 9 years dreading: the bedside manner of the Sphinx, the listening/caring abilities of the Predator, and she’s only interested in treatments that are clinically proven (despite the fact that nothing out there works in the long term). She needs to do a colonoscopy – understandably – and we’ll talk more then, I guess. She said she has to see if it’s Crohn’s among other things.
So of course I considered asking my primary for a different recommendation, but we’re with Kaiser – which I otherwise love – and there are very limited options. It’s either the other doctor in her practice, or drive an hour and a half in a direction that’s much less convenient for us. Plus, even though I’ve been religiously faithful about taking the Balsalazide and staying on the SCD, my symptoms have come back – I just can’t stop the bleeding, and it makes me so agitated. So I think I should get the colonoscopy soon, to get this thing taken care of. But it seems like all the dr./drug routes just continue down this path of using a med until it stops working, then going to something stronger…I don’t want to do that. I don’t know what else to do.

But do I really want to be probed by someone I’m not entirely sure is of this planet? My husband, who is supportive above and beyond where he should have to be, reminds me that I am in control, I can listen to her without being forced to take her recommendations. And she’s probably very competent, in a by-the-books sort of way. I’m leaning toward going ahead with her (it’s scheduled Thurs) then, if I don’t like her in the post-proc appointment, I’ll ask to switch to someone else and bring my snapshots with me. I’d love some advice on this!

Where I’d like to be in 1 year:

To be honest, out of debt. I think that’s proof my colitis isn’t that bad, that that’s the first thing I think of. I want my kids to go to college, and I’d like to play jazz piano, and grow every kind of berry there is on our little farmette, along with muscadines on every fence. I want to try those wing-suit things and fly through the Spires. I want to manage my colitis completely with diet, and have the discipline to stick with it.

Colitis Medications:

Just Balsalazide, for now. Which worked beautifully for about a week.

written by Beth

submitted in the colitis venting area




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balsalazide

9 Responses to Old Hippie, Old Diagnosis, New Resignation

  1. Adam
    Adam October 10, 2012 at 9:49 am #

    Hey Beth,

    First off, love that you’re calling yourself a hippie. I walk down Telegraph Avenue and People’s Park daily, so I’ll be thinking of you on the way to work for sure today!

    OK, first off, and I know I repeat this over and over again on the site, but if you haven’t before, no harm in getting a C-diff stool sample test done. Small small percentage chance that its further complicating your UC, but if Kasier will cover the costs, it could prove beneficial to rule that out or treat it if its positive.

    Also, I’d try as hard as you can to steer clear of the cerveza and wine moving forward if you’re going to continue with SCD. For most, that stuff is like an explosive grenade that can sometimes start WW3, and seems like you’ve figured that out as well.

    But overall, I think you’re approach right now to getting probed, seeing what’s what on the inside and then deciding for yourself if you’re going to move forward with your doc or try for a transfer to another is a great course to stear the ship. That’s probably the exact same thinking I’d have if I was in your shoes.

    Lastly, the positive thinking if worth more than any other medical or holistic or whatever therapies out there. Keep that positive vibe burning and it will take you super far. You’ve already come a long way and I’m confident in a few months you’ll be able to report a great followup.

    -Adam

    • Coralie October 12, 2012 at 1:45 am #

      Hi Adam

      Loving the website. Also, a little problem. I don’t seem to be able to reply to people first off. I have to wait till someone else replies to them and they reply back. Then I can hit their reply button. Am I making sense?
      Coralie

  2. joanna October 10, 2012 at 2:18 pm #

    hey beth!

    i have a very high voice so people always assume i’m a kind on the phone, to.o haha look about 7 younger than i really am.

    i am doing an SCD/paleo/FODMAPS combo that has been helping. i am still new to the FODMAPS thing but it’s something to look into to help with your symptoms. gas is one of my biggest pains and i’m hoping eliminating a lot of the FODMAPS will get rid of that problem.

  3. Bev October 10, 2012 at 2:46 pm #

    Hi Beth,

    A really good 50 billion strain strong probiotic, first and foremost! Then, the diet again. Oh, and ix-nay on the ooze-bay….okay?!

    Worked and works still for this old hippie!! LOL…

    Cheers:)

  4. shelly in maine October 10, 2012 at 3:58 pm #

    Hi Beth…I second and third the colonoscopy, probiotics, and positive attitude. I am not a real scd’er-Adam is, but you may want to go back to intro…I know you don’t want to hear this, but those grapes may have to go on hold for a while…like beginning scd where you have to be very careful of some if those rougher fruits/foods and especially their skins. Sorry.
    I too have the “is your mother home” voice…awesome for telemarketers! :-)
    Good luck with the colonoscopy. Shelly

  5. Beth October 11, 2012 at 1:22 am #

    Hi everybody – thanks for the good wishes and ideas. Adam, I’ll definitely ask about the c-diff. I’m open to the fecal transplant, too, if that’s the case. Joanna, I’ve never heard about FODMAPS, but I will look into that, too! Bev, where do you get your probiotic – is it the kind of thing you can find at the local co-op? Oh, and Shelly, I know you’re probably right about the grapes. I think I didn’t follow the beginning stage of the SCD enough, and taxed my system too much too soon – seems like land animal fats are a trigger, too.

  6. Bev October 11, 2012 at 8:33 am #

    Hey Beth!

    I just buy ‘my’ probiotic at the vitamin/health store. It’s called ULTIMATE FLORA CRITICAL CARE by RENEWLIFE, but, apparently, it’s not SCD ‘legal’. I am not on the SCD diet, but someone else on this site told us that that particular probiotic is not allowed while on the SCD diet. I can’t quite remember why…I think one of the probiotic strains in it goes against the SCD diet. Luckily, I’ve never seemed to need any special diet, once I got my probiotic ‘flora’ back!! I had problems with certain foods before the probiotics, but not since I’ve been taking them!! I’m so happy about that. I would hate to have to watch what I eat…it would be way too difficult for me.

    Just go into a store (maybe it’s the Co-op in your area) and find a clerk who knows what probiotic you should take for UC, and that jives with any diet you are on.

    Cheers:)

    • joanna October 11, 2012 at 8:45 am #

      renew life makes a SCD legal probiotic called Immune Defense. that’s the one i take since it has no bifidum bacteria.

      • Bev October 11, 2012 at 9:09 am #

        Thanks Joanna!

        That was the strain that was SCD illegal in the probiotic that I take. I couldn’t remember!

        Cheers:)

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