Guts

I helped my daughter prep for an upper and lower endoscopy this weekend. This involved her not eating anything or drinking anything other than clear liquids for 2 days and consuming stuff to help clean out her entire digestive system.  This was a lot less fun than it sounds.

It involved a lot of pain and hunger on her part and very little sleep for both of us. Then we had to show up at the hospital for 6:30 this morning where she was knocked out and had her innards filmed.

She was diagnosed with Crohn’s 5 years ago and it’s been a never-ending round of hospital visits, specialists, pokings, proddings, scans, check-ups, tests, tests, more tests and questions.  Nobody knows where this disease comes from, what exactly triggers it or how to treat it.

All the medical community knows is to dole out an escalating series of drugs and when those stop working (which they inevitably do) they start cutting.  We fought to avoid all drugs for the first 3 years and managed the disease with diet and complementary therapies. Then puberty hit and the increase in hormones created enough havoc in her body to force us to agree to a very mild immune-suppressant drug.

The effects of this drug are now on the wane and her GI wants to get out the big guns: intensive drug therapies whose side effects are longer than the trans-Canada highway and include links to cancer in the long-term. There’s no guarantee these will work and every evidence that they don’t work for long.

There’s no way I can agree to this. My daughter has been a champ, a star, a gutsy wee thing throughout – putting up with all the crap so far.  Especially because she feels pretty well most of the time. She occasionally has flare-ups, but is otherwise very healthy. She’s active, happy, eats well and has the discipline to stay away from junk which I believe has gone a long way in keeping things more or less under control.

So, I’m on the hunt for an Ottawa naturopath with some experience with IBDs who can help keep her stable and maintain growth and development, so we can tell our GI what to do with her nasty pharmaceuticals with some confidence and authority.

I’m open to any recommendations/warning for natural practitioners in Ottawa, as well as any other relevant information. I’ve done more research on Crohns than I’ve ever done on anything in my entire life, but I always find anecdotal evidence valuable.  Research always seems to be scrabbling to keep up with what the people who’ve lived with the disease have known forever.

All in all it’s been an unpleasant few days,  but not nearly as unpleasant for me as the weekend has been for the young mother I met in the hospital corridor today whose 9-year-old son was rushed to the hospital on Saturday with sudden, severe back pain and who was diagnosed today with leukemia.

Shit like this shouldn’t happen to kids.

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30 responses to “Guts

  1. I wish I had something bright and funny to add here, or better yet anything useful. I had to go through that purging programme last year just for a regular old man colonoscopy test to see if I was still alive. The prelude was way worse than the actual test. I hope she’s feeling better and I hope you can find something better than the pharmacy to help. You both deserve better.

  2. That doesn’t sound at all fun for anyone involved. I don’t know any naturopaths, but a good friend of mine does. I’ll ask her if her guy has any IBS/Crohns experience. I’ll email if she does.

    I’m sorry your daughter has to go through this. You’re right, it shouldn’t happen to kids.

  3. You’re right, it must have been a lot less fun than it sounds.

    I have not much to add, except that I admire your daughter, and other kids, who have to go through so much just to stay ‘healthy’ and do it without complaining all the time.

  4. I’ve been through the whole gammut of digestive system tests – from top to bottom. They’re certainly not pleasant. I have a friend with Crohns – unfortunately her case has progressed past the stage where naturopathy is an option … so, sorry I’m no help on that front. I’m wishing the best for both of you.

  5. Hi XUP, I’m sorry, but I don’t know any naturopaths. I hope your able to find the specialist you need to help your daughter. If there is anything that I can do, please let me know.

    J.

  6. I don’t know anyone in your area or anywhere else for that matter, who could help you but I just wanted to say sorry that your daughter and you have to go through this. She’s such a strong soul though to do all the stuff to stay healthy. I’m sure it’s not easy for both of you.

  7. I’m sorry that your daughter is having to deal with so much while so young. I understand the want to try and take it away from them.

    My prayers go out to you both. It’s been a rough couple days, and I hope you get some rest.

  8. You’re right. Stuff like this should NOT happen to kids!

    I was diagnosed with ulcerative colitis (the “other” IBD) in 1991, so I can sympathize with what you’re daughter’s going through. Except I wasn’t a kid. I was well into my 30’s by then.

    I don’t know what happened, but I haven’t had a flareup in years. I hope your daughter has similar luck and that this will just go away and leave her alone for a long time.

  9. Good luck in your search. I wish I could help! (other than sending good thoughts your way)

    Your daughter sounds like an amazing person. You must be so proud. 😉

  10. Bandobras – Thanks – “Colonoscopy” is one of those concepts that comes up in jokes a lot, isn’t it? I wonder why. In fact, the medical profession has stopped using that term and is now calling it “lower endoscopy”. Doesn’t have the same comical ring to it.

    Alison – I’d appreciate any info on local naturopaths. I’ve had quite a bit of experience with naturopaths in other cities and some are fabulous and some are just awful — but you need to spend a lot of money on appointments before you know who’s what. Any info would be helpful.

    Violetsky – I am really amazed by my daughter sometimes. The things she’s been through already with this disease – all endured stoically and with such blind faith that I’m doing what’s best for her. It’s overwhelming and so hard to know for sure that I’m always doing what’s best.

    Tania – What sort of treatment has your friend been receiving since she was diagnosed?

    A&J – Thanks for the kind thoughts.

    UA – I would, of course, do anything to take this burden from her, but if there’s anything good to be said about it, I do believe it has made her stronger, more mature, responsible and wiser than most kids her age — it has also served to keep us very close and it and she have taught me so very, very much.

    Grandy – Your good wishes are much appreciated.

    Heidilou- I like stories like this. I’m very much hoping that once the hormones calm down, so will the disease. Meantime, we’ll try to figure out a way to help that along without having to resort to anything too invasive. Are you taking any meds? Do you watch your diet or anything?

  11. I wish I could help, but I have no clue about naturopaths in Ottawa or anywhere else for that matter.

    Sorry the two of you have to go through this.

  12. Debra – She is and I am. And thanks so much.

    Reiner – Thanks for the link. Do you have any personal recommendations?

  13. I’ll send positive vibes your daughter’s way. I’m sorry she has to struggle with this but am so impressed with her maturity re: the situation. Wow.

    I’ll ask around and see what info I can turn up here in the states.

  14. I met a naturopath in Haliburton last week who seemed excellent. Unfortunately she lives in Bracebridge. I happened to ask her if she could recommend any naturopaths in Ottawa, but she didn’t know the Ottawa naturopath community. She suggested asking at the health food stores and finding one with years of experience. Apparently they have seven years of education, but the ensuing experience is also hugely educational.

    Hang in there, both of you. I know it’s hard for kids to go through that kind of thing, and just as hard for parents to witness it.

  15. Bruce Bonner at Back in Balance really helped me with my psorriasis. He’s a very nice individual, patient, and seems to have a good understanding of how what affects what. It’s not as serious as colitis, but who knows what he can do?

    http://backinbalancechiro.ca/index.php?page=meet-our-team

    It did involve supplements, but when they ran out (too expensive for me to continue using) I followed the diet and maintained the improvements.

  16. OTC – Thanks, Dee. If you can find someone who has a cure, I’m on my way.

    Zoom – Naturopaths have as much education as a medical doctor — lots of people don’t realize that. They just learn to deal with illness and disease holistically and naturally rather than with drugs and surgery. I still think each discipline has their place and there shouldn’t be such a huge division between the two.

    Meanie – Thanks for the referral. I’ll keep him in mind. If nothing else, he could probably recommend an N.D.

  17. Sorry I’m late to the comment party and I hope your daughter gets well soon!!

    I actually have a friend who claims to have stumbled upon a “cure” for this, via natural things, so I’ll forward you a link to that info. Look for the email (I have to do some searching, but I should have it to you soon.)

  18. Hey XUP, have you heard of the Ottawa Wellness and Detox centre? They have a lot of different stuff, and I haven’t been there myself but a friend says they’re quite good. They may have some ideas about how to handle the disease.
    The specific product I wanted to suggest is “Holy Tea”. I haven’t gotten around to buying some myself, but according to the testimonials it’s a concoction of herbs that helps with a lot of digestive issues. I’m going to get some probably next week (as soon as I actually have a chance to drive down on one of the days I’m in Ottawa) and start taking it for my allergies. I don’t think it can make things worse, and it might be able to make things better.
    On the site, they say it’s good for: “Those who suffer with Acid Reflux, Constipation, Indigestion, Bloating, Excess Gass and Belching may use Dr. Miller’s Holy Tea”. It might help symptoms if not the direct disease.
    The specific link for this product is at:
    http://www.ottawawellness.com/products.php#HolyTea

  19. CP – I find this website really confusing. As far as I can make out they are selling 2 products, but it doesn’t really say how these products are supposed to help or even what they’re supposed to help. I’ll investigate further.

    Stella – thank you

    Noha – Crohn’s goes beyond digestive disorders. It’s an immune disease where the immune system is overactive and begins attacking part of the body in a negative way creating an inflammatory condition in one or more areas of the digestive system. Yes, certain foods, supplements that help with digestive disorders will be of some benefit, but the key is to regulate the immune system so that it gets back to doing the job it’s supposed to be doing and nothing more, which in turn will calm the inflammation. As you can imagine, an immune system issue is a perfect candidate for natural medicine as opposed to drugs which will only serve to further compromise the immune system. Thank you so much for your concern and the information. AND don’t ever think that consuming herbs can’t be harmful. Herbs can be very powerful and have the potential to do harm if taken indiscriminately. You should always be sure of what you’re taking and what you’re taking it for before self-medicating. Take care.

  20. Thanks for sharing this story, XUP. I live in Ottawa but don’t know any naturopaths myself. My neighbour uses one, though, so I will ask her for a name and any thoughts she has.

    Our son (age 5) has ongoing problems with vomiting and diarrhea and we’ve been through lots of tests with no luck. Just this week an adult friend of ours who has Crohn’s suggested that this might be his problem. I’m definitely going to wait before going through with Crohn’s testing because it seems so drastic and severe — plus, as you say, the “treatments” hardly seem worth it. But I’m interested in any advice you might have — how you knew something was wrong with your daughter, why they/you suspected Crohn’s, and what diet/foods you would recommend/advise against to keep it under control (maybe some dietary changes would help my son without us having do get into the whole barium thing).

    In the meantime, good luck to you and your daughter, I hope you find some answers and treatments that work.

  21. Two good options – Dr Ayoubzadeh at Integral (Sandy Hill) – he’s a naturopath and utilizes a number of therapies and Laurie Zrudlo (homeopathy)in Chelsea Quebec are both amazingly good.

    My ex has Crohns and when we were together he managed to stay off drugs for…15 years… through my pushing the naturopathic route and the Specific Carbohydrate Diet. I can tell just by looking at him that he’s on the drugs now though so I don’t know if they stopped working, or if I really was the driving force behind his foray into natural medicine.

    Anyhow, Dr Ayoubzadeh kept me off heavy duty immune suppressants when I was dealing with Graves Disease, and I am still using Laurie as my homeopath from here in Nova Scotia. She is that great and I’m afraid to find someone new! Though I have found an amazing osteopath here!

  22. mudmamma – Thanks so much. I’ll call Integral. Keeping my daughter of immune suppressants is exactly what we’re looking for. My brother also has Grave’s disease, so obviously there is something genetically messed up with our immune systems. We’ve gotten to know quite a few adults with Crohn’s and colitis who are able to manage without drugs. I think once the adolescent horomone surge calms down, perhaps the Crohn’s will, too. Also, it’s important at this stage to make sure she’s absorbing all her nutrients and growing and developing as normally as possible under the circumstances. I’m hoping that once we’ve gotten through the next 2-3 years things will get easier for her.

  23. In addition to checking out naturopaths, I would strongly recommend Traditional Chinese Medicine practitioners, because they are usually awesome and they have experience with gut stuff. I also imagine that you can probably find someone who does TCM in your region, so it’s worth a shot.

  24. meloukhia – We did consult TCM practitioners in the past (in Halifax) and did a round of acupuncture and some herbals which I think were helpful. Some of the natural health clinics here combine a variety of complementary therapies so I imagine some of the TCM stuff that worked will be included again. We have some appointments coming up in the next few weeks, including Dr Ayoubzadeh.

  25. Hi XUP,

    My old roomie Andrea (or banjogal as she is affectionately known) passed along this link to see if I had any suggestions. I have Crohn’s – I was diagnosed in 1994 at the age of 14. Though I have explored extensively the complementary medicine scene, I do not have a name of a naturopath here in Ottawa (sorry!). I do, however, see a bunch of other people like an acupunturist, nutritionist, Rosario Bates who does Total Body Modification stuff, and another TCM practitioner here in Ottawa and I’ve seen a slew of people in London, ON (where I’m from). I’m not currently taking any meds for the disease (yeah!) and I’m feeling good.

    If you want more information, I’d be more than happy to chat. Andrea has my email. I definitely would have liked to have someone to talk to when I was going through all that mess at 14!

    Send my regards to your daughter – she sounds like a trooper extraordinaire.

    Cheers,
    Fran

  26. Fran – thanks so much. We met at the clothing auction, if you remember?? I’ll get in touch with Andrea once she’s moved and settled in and get your email — or you could email me: urbanpedestrian@gmail.com. I’m sure my daughter would love to talk to you.