Monday, April 26, 2010

here, you can finish off this chocolate bunny, I'm going to need something stronger

I'm thinking of re-naming this blog. Downward Spiral or So What's Wrong with You This Week? come to mind.

Remember last spring when I was really happy to discover that the "digestive issues" I'd been having after my operation would go away by themselves? Well, they did, and I was doing just fine. Up until late February of this year, that is, when it all came back with a vengeance. Off to the gastroenterologist for another colonoscopy. Yippee. The diagnosis I got a week ago last Friday was not very encouraging. Dr. S now thinks that since this is the second time this has happened that it's very likely to be a chronic problem - mild ulcerative colitis, to be exact. Ugh.

Along with Crohn's disease, ulcerative colitis is a form of IBD - inflammatory bowel disease, not to be confused with irritable bowel syndrome (IBS) which can be annoying but is not generally a serious condition. UC is not much fun at all. Go look it up if you're not the squeamish type. It's not caused by diet, stress or emotional issues, although all those can worsen the symptoms. Despite an official consensus, UC is generally considered to be an autoimmune condition in the same category as type 1 diabetes, lupus, rheumatid arthritis, psoriasis, MS, thyroid disease etc. If you already have one autoimmune condition, your chances of getting another one are increased. I've had autoimmune thyroid disease for over 40 years so I guess it's not suprising that my immune system has now decided to attack somewhere else.

Anyway, for the next 8 weeks I'm taking Mesalazine, the standard anti-inflammatory medication which comes with its own set of side effects. Twice a day I'm choking down these little granules that look (and probably taste) just like the sand you spread in the bottom of a bird cage. Apparently the granular 'micro pellet' form is very effective because it bypasses the stomach and goes straight to where the problem is. So far I have seen an improvement. I don't exactly feel good, but I do feel a bit better and can actually leave the house now.

While I was dealing with all that I also developed a horrible dry cough just before the Easter holidays. My regular doc said my white blood cell count was very elevated, indicating an infection somewhere. He thought I might be developing walking pneumonia so he put me on antibiotics for a week. Just the thing when your innards are already in a tizzy, but he felt it was necessary. The cough lingered on for a month, finally (almost) disappearing this week. Along with that I had puffy eyelids, swollen ankles and a fever that spiked in the evenings and broke during the night. I also lost 17 lbs without even trying. That would normally be a cause for celebration, but this was *not* the right way to go about it. I spent most of the Easter holidays lying on the sofa feeling very, very sorry for myself. Mr. M and the boys were angels and did everything that needed to be done to keep the house from imploding.

After the 8 weeks are over, I'm scheduled for yet another colonoscopy. I know. I'm as thrilled as you are. But you know what? There are worse things. Way worse. A week after the colonoscopy we leave for Vancouver for 6 weeks. I'm assuming I'll still be on medication then to keep this thing in remission. It may stay in remission, it may get much worse. No one knows. Right now I'm trying to stay positive and focus on the good days, letting the not so good days slide.

Right now I'm doing extensive research into nutrition and supplements. There's no cure for this disease, you can't just pop a magic pill or take some exotic herbs, but there are ways to make things easier and ensure that one is getting the proper nutrients while minimizing flares. This book - What to Eat with IBD - has been a huge help to me as far as 'hurting' and 'healing' foods are concerned.

All of my energy has been centered inward lately, but I think I may have a little bit left over for blogging in the near future. Stick with me, huh?

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43 Comments:

At April 26, 2010 12:06 PM, Anonymous Anonymous said...

Hi,

Long time lurker (I'm Canadian and expected to be living as an expat in Germany, so I started reading a bunch of expat blogs, my plan didn't quite work out, but I never got rid of the blogs). Anyway, I don't know much about UC or other related diseases myself, but this post http://robbwolf.com/2009/02/03/ulcerative-colitis/ and some of the related stuff on the website might be useful to you. I think Wolf is pretty knowledgeable and the no-gluten paleo type eating seems to be really helpful in these inflammation/auto-immune disorders. The podcasts are great also, if you have time to listen to them all!

 
At April 26, 2010 1:23 PM, Anonymous Megan said...

Ugh that's a lot to deal with. Hang in there. I hope you get better soon.

 
At April 26, 2010 1:31 PM, Blogger Jessica said...

I know it's no magic pill either, but having strangers rooting for you can't hurt, right? Know you have my hopeful/positive wishes. :)

6 weeks in Van can't hurt either!

 
At April 26, 2010 2:10 PM, Blogger G in Berlin said...

Normlly I would be congratulating you on the weight loss, but you are right- this was a rotten way to get that result. I hope that your dietary changes and the medication help you to control the condition and that you don't have more flare ups in the future. Missed your posting and thinking of you.

 
At April 26, 2010 2:38 PM, Blogger Thimbleanna said...

Oh No! I wondered why you haven't been blogging much -- I just figured you were having way too much fun in Germany! I hope you'll get it figured out soon and feel much better -- especially in time for your Vancouver visit!

 
At April 26, 2010 3:15 PM, Blogger Maria said...

I've been missing you and definitely will be sticking with you. I Hope you feel better soon and get this under control! It is a lot to deal with! Hugs!

 
At April 26, 2010 3:24 PM, Blogger Yelli said...

You poor thing. Sending positive thoughts thoughts your way that this is all over soon!

 
At April 26, 2010 4:05 PM, Blogger Blogging Mama Andrea said...

I'm always sticking with you Mausi! I really hope that, while this thing will not be fun, it can at least be a step in getting you on an even road to recovery. I don't think there's a much better way to end the journey than 6 weeks relaxing back at 'home'. Keep focused on the end and get lots of rest. Take care of yourself because one day I will come back to Germany and I'm going to get on DB and head to Your Town to say hi!

 
At April 26, 2010 5:52 PM, Blogger hexe said...

I am so sorry you have been ill. Sending positive thoughts and well wishes your way.

 
At April 26, 2010 6:38 PM, Blogger CanadianSwiss said...

Of course, I'll be sticking with you girl! I really hope that you can get this all under control. God knows, it's been hanging with you long enough!

At least you have Canada to look forward to. I do too :)

 
At April 26, 2010 7:33 PM, Blogger Mar said...

What can I say? look forward to those marvelous weeks in Canada :)

 
At April 26, 2010 7:54 PM, Blogger meredith said...

I hope you get these health problems figured out and feel better soon. Back home time will be good for the moral!
I'll be sticking with you :)

 
At April 26, 2010 9:22 PM, Blogger Antipo Déesse said...

You have such a positive attitude Christina, and you are obviously doing all the right things: I admire you completely! lots of love, Hxxxxxxx

 
At April 26, 2010 9:28 PM, Anonymous Maribeth said...

I've missed you and wondered where you were. I am sending healing thoughts your way! I sure hope that you are able to go and have a wonderful time when you go home! I know that Vancouver will always be home for you!

 
At April 26, 2010 9:43 PM, Anonymous Anonymous said...

Well, bless your heart. I've missed you and thought that you were on an extended vacation of some sort. So sad to hear about the UC. And ironically, my 17 yr old nephew has it too, so I appreciate all of the info I can get on it. I had no idea it was so serious. Hang in there. And as everyone else says, going to VAN will help you (hopefully). Wishing good thoughts for you.
Lisa formally in Stuttgart, now in Indy.

 
At April 27, 2010 3:05 AM, Blogger Rositta said...

Christina I've been wondering what happened to you and now I know. I truly hope that things get better with you. Around here it's "what's wrong with you today" so I understand. Since I have RA I have been warned that since I already suffer from IBS I can expect to get IBD sometime in my life. All I can do is watch my diet carefully and hope I don't get one more thing. You will have a great time in Vancouver with your family. Take care and hugs...ciao :)

 
At April 27, 2010 5:44 AM, Anonymous Don Wiss said...

I see nothing at the Amazon site on the book you mention to be able to evaluate it. I am not at all impressed by anything coming from a dietitian. They are taught to push the foods of agribusiness. And that is what they do.

With the web these days you don't really need to buy books. There are two diets you should learn about. And as soon as possible adopt one or the other, or a combination. One is the paleo diet mentioned above. The other is the Specific Carbohydrate Diet, or SCD.

 
At April 27, 2010 7:36 AM, Anonymous ian in hamburg said...

I really hope you can keep this in check enough to enjoy your six weeks in the best part of Canada. I'd say I'm envious, but not this time. Get well!

 
At April 27, 2010 7:40 AM, Blogger Betsy said...

Oh Christina, I'm so sorry to hear this! Hope that you feel better very soon and that you have a great trip to Vancouver. Sending you a great, big, virtual hug from the burbs near Stuttgart...

 
At April 27, 2010 12:10 PM, Blogger christina said...

Anonymous - Thanks for dropping by!

Megan - Thanks! I think I'm on my way now.

Jessica - Thank you so much - that helps more than any pill! :-)

G - Thanks for your kind thoughts. Yeah, the weight loss would have been great if it had happened the right way, but I fear much of this is muscle loss since I wasn't able to exercise at all and was eating very little.

Thimbleanna - Every time I sat down to blog it was just too much, you know? But I am feeling quite a bit better now, thanks!

Maria - Thank you - I'm hoping I'll be able to keep it to a dull roar.

Yelli - Thanks! I can feel the vibes!

Andrea - Yes, the vacation is something to look forward to and I'll be able to continue getting better there.

Hexe - Thank you so much!

Canadian Swiss - I was kind of hoping that this year was going to be MY year health wise but it looks like I'll have to wait a bit longer. :-)

Mar - Oh, I am looking forward to it. So much to do before then!

meredith - Thanks! If worst comes to worst I can just lie on my parents' sofa and watch the Food Network all day. :-)

Antipo - Why thank you, Darling. I guess we just have to accept whatever comes along and deal with it as best we can.

Maribeth - Thanks! Well at least the timing on this is right and I do think I'll be able to enjoy the summer at "home".

Anonymous Lisa - Thank you! Yes, it can be pretty serious. Of course you always read about the absolute worst cases on the internet and some people really have it tough. Before I starting researching I didn't realize that it's actually a young person's disease - average age of diagnosis 15 - 30 yrs so I can't blame it on old age I guess. Hope your nephew is doing well.

Rositta - Thanks! I know you understand - you've had so many health challenges yourself. Let's cross our fingers that you don't get this thing. Some people seem to have certain triggers that set it off, but they're still not really sure of the cause.

Don - Thanks for taking the time out of your busy day to push your agenda on my blog. I've researched both of those diets extensively, thanks, and have decided they are not for me. Everyone's different. I'm glad the caveman lifestyle is working for you and your celiac disease, though. Hopefully Oprah will wake up and smell the coffee one of these days too. But seriously - nuts, seeds, berries, raw fruits and vegetables for IBD?? I don't think so. Ever heard of a low residue diet? That's where it's at.

Oh, and you say books aren't necessary, yet you list hundreds of them on your website and get a commission from Amazon every time someone clicks and buys. Hmmm.

Ian - I really feel that the meds are starting to do their work and I hope they continue to do so. This seems to be a mild case so I think I'll be just fine. Thanks for your good wishes!

Betsy - Thanks for the hugs! Yeah, after our conversations last year I though this was over, but nope, guess not. Things are going really well, though.

 
At April 27, 2010 6:26 PM, Blogger Michelle said...

Glad to hear Canada is in the near future but so sorry to hear you have been unwell :( Miss having your posts but take care of yourself first!! Hoping you are better soon. Michelle

 
At April 28, 2010 1:52 AM, Blogger Ginnie said...

Ohhhh, Christina. I am so sorry. UGH. You did NOT need or want this! Please know my best of thoughts are with you, wishing you the peace of mind you need to get through it all. Hopefully the trip back to Canada will be just what the doctor ordered!

 
At April 28, 2010 2:40 AM, Blogger Expat Traveler said...

Sheesh - look at all of your comments!!!!

I do hope you can read more about nutrition and if you cannot do anything about it, nutrition is one thing you can help to change possibly for the better...

Crossing my fingers all goes well for the near future months!

 
At April 28, 2010 6:05 AM, Blogger essie said...

MAUSI!!

oh my stars-this is scary!
i'm so sorry to hear you have been sick and though i don't know much about your ailments i know that you will get better :o)

(btw of course i'm stickin'with ya!!!)

please please keep resting and reading, try to enjoy the time in vancouver!

 
At April 28, 2010 6:07 AM, Blogger Lilian said...

Oh no!! I'm so sorry that it seems to be "official" now that you have UC/IBD. I only have IBS, but I sometimes worry that it could become worse and turn into something more serious.

I hope you feel better soon and that the nutrition advice is helpful.

I'm glad you've decided not to give up on blogging.

 
At April 28, 2010 2:53 PM, Blogger christina said...

Michelle - Thank you! Feeling better every day.

Ginnie - Thanks for your kind thoughts, my dear. No, I really don't need this, but you just never know what the Universe is going to throw at you next, do you? :-)

Expat - Yes, I think knowing what sort of foods can make it better or worse is really important - just makes like a bit easier.

essie - Thank you! I'm hoping it's not going to get scarier!

Lilian - Yes, IBS is no fun either but I don't know if there's any hard evidence that it can lead to IBD. Let's hope not anyway! Thanks for thinking of me.

 
At April 29, 2010 12:25 PM, Blogger Snooker said...

My GOSH! I disconnect for a few days and look what happens! Darlin' I'm so sorry to hear this. It doesn't sound like you're in for a pleasure cruise with this stuff.
Do your best to enjoy going home and take good care of yourself.

 
At April 30, 2010 7:09 AM, Blogger Juelle-Ann said...

Christina
I share this as only one other person's experience with UC. My mother Christena (spelled a bit differently but yes) was diagnosed with UC at age 55 or so. She spent a year reading and doing what the doc told her to do. No significant improvement. Starting year 2, she ate nothing but baby food or food she had made herself (blend,strain,blend,strain). I was away at college during this time, so didn't see the whole process. It took almost two years on this diet and then a slow return to normal foods. She lived until age 97 and did not further exhibit signs of UC.

Just one person's story,

JuelleAnn

 
At April 30, 2010 9:12 PM, Blogger Windrose said...

Dear Christina,

I've been missing you too! Your writings always put a smile on my face and I'm so sorry to hear you have not been well. I am sending you lots and lots of good vibes.

 
At May 01, 2010 4:51 PM, Blogger Carol said...

I'm still here and not going anywhere. Feel better!

Carol

 
At May 01, 2010 9:55 PM, Blogger Pumpkin said...

I really hope that you start feeling better and that your trip back to Canada is wonderful. Sucks that it is you (the sweetest blogger I know) that is going through this.

 
At May 02, 2010 2:10 PM, Blogger beaverboosh said...

Hey sweet thing, really sorry to hear about this. My thoughts are with you. x

 
At May 06, 2010 11:35 AM, Blogger C said...

I have a friend with UIC and it sounds horrid. I'm sorry you're going through it. Maybe to get a laugh, you can listen to the recent This American Life podcast? You know, the one which interviews a guy who insists that contracting hookwork is the answer to these autoimmune diseases ... I'm not encouraging or discouraging hookworm, per se, but I am suggesting that it might make your stomach feel better once it's cramped from all that laughing you'll do. :)

 
At May 06, 2010 9:21 PM, Blogger christina said...

Snooker - I know! You leave me alone for a second and look at all the trouble I get into! Thanks for your kind wishes.

Juelle-Ann - thanks so much for your comment. Your mother was so lucky to go into remission. I'm really hoping for that.

Windrose - I can feel the good vibes - thank you!

Carol - Thanks! I'm trying to think positive.

Pumpkin - Aww, aren't you sweet. Actually right now I'm up for the Crankiest Blogger award but I'm sure things will get better. :-)

Beav - Thank you so much!

C - My case has been pretty mild so far, but it's still no fun. I'll check out the podcast for sure. I've actually read about a guy who harvests those disgusting worms and sells them to people. Only as a last resort, I say! Eeew.

 
At May 07, 2010 9:33 AM, Anonymous Lisa said...

I read this post about a week ago and fled. Then came back a few days later and fled again. I'm living it, too, just not the specifics. Germany seems to have broken my health and yes, I'm holding a grudge and expect to be compensated. Big hugs to you and an I'm so sorry you're going through this. I feel you.

 
At May 09, 2010 2:30 PM, Anonymous Maribeth said...

Check out Dackel Princess. I have an entry up about Einstein, the World's Smallest Horse! He was born here in New Hampshire, just south of us. We went yesterday to see him.

 
At May 09, 2010 10:56 PM, Blogger christina said...

Lisa - *sigh* I get it. Sometimes it just hard to know what to say. I'm doing OK while the Mr. is having a major "I brough you here and just look what happened" guilt trip. But onward and upward, eh? It has to get better SOME time! :-)

 
At May 12, 2010 7:40 PM, Blogger swenglishexpat said...

You will be in Vancouver now, but I have myself been somewhat absent for a while, so I am trying to catch up. I must say, you have had a lot on your plate (pun not really intended) lately. I do feel sorry for you, and I hope things improve. A long stay in Vancouver surely acts as good medicine. Hope you are having a great time there!

 
At May 24, 2010 11:42 PM, Anonymous Anonymous said...

Mausi,
Come back...give us a vacation update! We miss you.
Bless your heart.
Lisa in Indy

 
At May 25, 2010 11:03 PM, Blogger Canadiagaditana said...

Hang in there.
And, if you are serious about your "wanna trade" comment on the front page, I'll take your weedy German garden and leave you my dog-poo and bar filled Spanish neighbourhood. But you have to take my mother-in-law too. She lives down the street.

notsospanish.wordpress.com

 
At May 26, 2010 7:13 PM, Blogger christina said...

swenglishexpat - Not in Vancouver yet - only three more weeks to go. And yes, I do think it will be good medicine.

Lisa in Indy - Vacation update soon - still need to pack and get there!

Canadiagaditana - Thanks for visiting. Hmm, that sounds like an interesting trade. How about your mother-in-law for my father-in-law? :-)

 
At June 19, 2010 3:36 PM, Anonymous V-Grrrl @ Compost Studios said...

Chronic illness debilitates in so many ways--physically, psychologically. I'm sorry you're facing this and dealing with it now. I hope you and your doctors find the treatment that balance your body and symptoms and get you feeling better and active again.

 
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