Monday, September 29, 2008

Turbulent Times

The last two days I've been fighting off rising panic as I've started to develop new pain about a centimetre below my abscess drainage surgery wound. A tender area that is very sensitive if I touch it. I'm also convinced I can see some slight swelling, but if I think back, I can't be sure it wasn't always there. What scares me is that it feels just like it did back when my first abscess was forming. Am I getting a second abscess? A new fistula, or complications with my current one (which continues to leak a bit)? Is the current fistula's leakage taking a new path way in my abdomen and forming a new abscess? Or, am I making a mountain out of nothing- it could just be tenderness from the rather vigorous packing on behalf of my nurse the last two days- trying to prevent the wound from closing quite yet. I don't know! I can feel the panic rising as I contemplate yet another abscess and what that would mean. Likely my doctors would recommend that my naughty section of ileum needs to be removed. Geez- I start to choke up just thinking about that.

Add on top of that, the fact that I'm suffering from some mild Prednisone withdrawal symptoms. Fatigue, sore muscles and joints, nausea. I feel 'off' the last few days. Just great.

My plan is to wait for my nurse to come today, which should be any minute now, and consult with her on what I should do. Call my GI and try to get an appointment in the next few days? Go back to the hospital ER? Do nothing and monitor my temperature and heart rate (signs from my first abscess)? I don't know!

I called one of my best friends last night in the middle of a full blown panic melt down, and she calmed me down and said there's no use getting worked up over what could be nothing. She advised that I gather as much info as possible and consult with those in the know. So I think talking to my nurse and GI will be the best ideas. I just need to avoid freaking out till then. In the end, it is what it is. Freaking out won't change my condition- I just need to meet each challenge head on, and deal with things as they come. Crohn's sucks, but letting it turn me into a blubbering basket case will mean the terrorists have won. *cough* I mean, the disease will have won. *small attempt at a grin*


Well, my nurse advises me to monitor my pain and temperature and if either gets worse, to call my doc for an appointment. It also occured to me that this might be my 'regular' Crohn's disease flare up pain returning now that the Prednisone is leaving my system. Either way, I think a trip to the GI sooner rather than later to discuss my options is in order.

By the way folks, there's another witty Crohn's blog in town: Check it out. What is it about us Crohn's girls that drives us to write nutty posts about our bowels for the world to read? Haha. Hopefully though, our blogging is helping someone in some small way.

Thursday, September 25, 2008

I'm Prednisone Freeeee!!!!

Today marks the first day that I don't have to take any Prednisone. Yay! I'm so glad to be off of this, and I'm really hoping some of the more... cosmetic... side effects reverse themselves soon! I also hope my symptoms don't get worse and that the 5-ASA is enough to keep things in check. *crossing my fingers*

Thursday, September 18, 2008

This Ain't Going To Be Easy

I'm feeling a little blue today. My old friend, diarrhea has returned. Just a bit. Now that I'm down to only 5mg of Prednisone per day. I guess it was the Prednisone all along that was keeping my guts calm. It was easy to tell myself that things were getting better. That I don't need surgery. That a temporary dose of Prednisone and the 5-ASA I'm now on would be enough. To dream of being able to re-introduce foods. A part of me still hopes that I have a 'mild' case of Crohn's. Maybe I do, maybe I don't. It's "Fistulizing Crohn's" according to my doctor appointment yesterday. Hence my lovely perforation leading to abscess leading to surgery a month ago to drain said abscess. Anyway, those are some scary words, and the sneaky return of big D combined with a general malaise about wanting my life back has me feeling a little down in the dumps. I know what I'll do... I'll go vacuum my apartment and take solace in the fact that I actually feel well enough to vacuum. That's something at least.

Actually, I was feeling agitated about all this enough last night that I went to the weekly meditation group meeting that I haven't been to in almost a year. It was nice to be surrounded by calm, content people. The woman who gave the initial talk also had a good point that was relevant to my current issues. She discussed the need to be objective when viewing our thoughts and emotions. To be able to SEE ourselves feeling bad, observe that, realize that "Hey, I'm really down today", accept that, let ourselves be down, but then let the emotion or negative thoughts pass. Don't cling to them. Don't hold on and throw yourself a pity party. So yeah, I'm blue today.... but tomorrow I'll be 'bright' yet again. In fact, I'm feeling a little sunnier already. Where's that vacuum?

NYTimes Special on Crohn's

I have to repeat the links to this information that I found on Alicia's blog. The NYTimes has a great special on Crohn's Disease. There is also an NYTimes wellness blog section on Crohn's too. Check this stuff out. It helped me feel not so alone. Especially check out the voice diaries of people living with Crohn's.

Tuesday, September 16, 2008

Thank A Nurse

For me, it was one of those occupations where I thought that I knew what it involved. Sure, nurses help patients and doctors. Simple. Or so I thought. If there's one thing I've learned in my two stays at the hospital, and my current use of home-care services… it's that nurses are awesome. They are heroes. The are the REAL caretakers of patients. If a doctor is the engineer of a skyscraper, nurses are the builders who get their hands dirty and do the real work.

For both of my stays I spent some time in the ER with the ER nurses, and then I was admitted and was under the care of the nurses assigned to my floor and wing. Two shifts- a night nurse and a day nurse. Then there were the nurses who came in for special reasons, like taking blood samples, and the nurses and technicians at the various test labs, like ultrasound, x-ray, etc.

Entirely across the board I was blown away with how hard these men and women work. How kind and patient they are. Being in a hospital is typically unpleasant, but they made it just a little more bearable. Nurses have to do the real dirty work. From bathing the woman in the bed next to me, and helping her use the toilet. To monitoring my bathroom outputs, and answering my endless questions about my IVs, drugs, bandages and more. Doctors may get all the glory (and they have my thanks as well) for pronouncing the diagnosis and prescribing the treatments, but it's the nurses who do the actual CARING for the patient.

My home-care nurses (one main nurse and a few who occasionally sub for her when it's her weekend) are equally kind. They are careful and precise, friendly and knowledgeable. In fact, I've grown quite fond of my primary home-care nurse.

I can't say thank-you enough. In fact, I'm always profuse in my thank-yous. I say please. I ask nicely. I say that I appreciate their help. I give compliments and ask about whether they enjoy their jobs. This in contrast to one woman in the bed next to mine during one of my stays who was outright rude and demanding. I was even told by one nurse who was wheeling me down the hall for yet another test, that she noticed that one nurse had written in my chart: “pleasant”. How sad that a pleasant patient is rare enough that the nurses make note of it.

Being sick sucks. Nothing will change that. But I ask all my readers to try and give a smile and a thank-you to the hard working nurses who are trying to help. I now know how much they deserve our appreciation, and I have a new found respect for the nursing profession. And to all the nurses who have taken care of me, what more can I say, but Thank You.

Saturday, September 13, 2008

On Medication and Not Being a Hero

A close friend of mine was diagnosed with Crohn's Disease several years ago. She tells me that back then they didn't have nearly as many drug options for treating Crohn's. I think it's wonderful that new treatments are being developed, and that we have options available to us.

My current regimen includes:

  • Prednisone: a corticosteroid which reduces inflammation. It has all kinds of nasty side effects and I'm happy to be down to 10mg per day from my initial 4 weeks of 40mg per day. This is commonly the first thing that people are prescribed because it's powerful and effective.

  • 5-ASA (5-Aminosalicylic): An anti-inflammatory which targets the intestines. A common treatment for Crohn's which has much fewer side effects. 1500mg twice per day.

  • Iron (Ferrous Gluconate): My iron levels were low as of my last blood test. They must have been low for my whole life because I now feel more alert and less sensitive to the cold than I have in... as long as I can remember. 300mg twice per day.

  • Multi-vitamin with Ester-C: Important to make sure I'm getting proper nutrition. The Ester-C is a non-acidic vitamin C which doesn't irritate my stomach. One per day.

  • Calcium and Vitamin D: 1000mg per day. Prednisone leeches calcium out of your body so this is important. Plus I don't eat dairy, though I do drink fortified rice milk.

  • Vitamin B12: Makes me feel much more energetic. My inflamed section of bowel is where this is normally absorbed. So I want to make sure I'm getting enough.

  • Percocet (Oxycodone): As needed for pain. This leads me into the second part of this post... on not being a hero.

Not Being A Hero

There's one area in your life where you really shouldn't try to be a hero, and that's pain management. To understand where I'm coming from, let me explain that I was raised by parents who look upon any kind of medication as a last resort. I can take a single regular strength Tylenol and feel relief from a headache- that's how sensitive I am to it because I never take it. So, when I was prescribed Oxycodone for the pain of my Crohn's flare up, and later my surgery to drain an abscess... I was very reluctant to take it. My first experience with the pain meds they gave me - Tylenol 3s was that it caused constipation and just made me feel worse. And for some reason, in my head I felt that if I was taking medication for pain, somehow I was losing to the Crohn's or it was worse than it was. Like there was an invisible line that I was crossing by taking a pain pill.

Boy was I set straight. My boyfriend, family and friends all called me out on my nonsense. Even my home-care nurse looked at me dumbfounded when I told her, only a few days after my surgery, that I had only taken half of a pill in the last 24 hours. She looked at me all maternally and said "Dear, you just had surgery, take the pills so you can feel a little bit normal.".

So, I relented and when my pain was up, I took a pill and while it made me sing random songs... over all it had few side effects, and made me feel much better. Today, I'm pain pill free b/c my pain level is thankfully quite low.

So, my fellow sufferers, if you're at all like me- cut it out, and take the pain pill. You deserve to have whatever relief you can get.

Don't forget- only take medications as directed by your doctor!

Friday, September 12, 2008

I Forgot About Sleep

It's been three weeks since the surgery to drain my abscess. Luckily my wound seems to be healing slowly but nicely (I'm sure I'm jinxing myself by typing that... cue the gurgling). Today however, I was struck by a real feeling of fatigue. I'm yawning. I'm stretching. I'm unfocused. At first I was like, hey, what's going on!?? However, even an amateur sleuth could deduce a whole load of reasons for this:

• I've been working from home, but maintaining full time hours at the computer.
• My new Xbox makes it very easy to stay up half an hour later. Ok, more like an hour.
• I've had about 2 months of Prednisone induced insomnia.
• Now that the Prednisone is down to 10mg per day, I'm not getting the artificial energy that comes from it.
• I haven't been napping or sleeping any extra for the last 3 weeks to aid my body's recovery.

So, yeah, it's my own fault. A smart person would be getting some extra sleep to help her body recover. Sleep more silly girl! Ok, I am now vowing to start getting some more sleep. No one will make fun of me for going to bed at 9:30pm instead of 10:30pm right? Right!

Thursday, September 11, 2008

Why Bright Side?

Readers might ask, what's the bright side of Crohn's? A strange name for a blog, I'm sure, and if anyone knows the real answer, I'm all ears. No... it's not about some wry attempt at making light of Crohn's -- "The weight-loss program that works!" ba dum ching! -- no, it's about the general philosophy I try to live by. I always try to look for the positives in my life. Count my blessings. It sounds trite, but it works.

Ok, if you, dear reader are suffering from Crohn's, some other illness, or just dealing with one of the many possible sources of suffering in our lives, I have a project for you. Go grab a piece of paper and a pen. Yes, real paper, don't use your computer- having a physical result helps. Now, at the top write a title like "My Blessings", or "Good Things In My Life". Next, write the numbers 1 to 20 down the margin. Now, I want you to fill that list with all the bright sides in your life. Your blessings. I know you have at least 20. If you fill 20, add 5 more. Keep doing that till you just can't rack your brain for more. Fold up the list and carry it with you, it might take a few days to complete it, and it will change with time. The items can be big and serious, or small and light-hearted. To help you out, here are a few random items from my list of over 50:

- Parents that love and support me.
- An amazing super-hero, dragon-slaying husband.
- My beautiful baby boy.
- The most awesome group of friends.
- A close relationship with my siblings.
- Finally getting a diagnosis, and starting treatment.
- A country that is free, and has free health care.
- My intelligence and love of learning.
- My Xbox360. Who needs mobility to have fun! :)
- Being able to work from home as needed.

You get the idea. Now you can jazz up your list with some coloured pens, and keep it with you. When things get bad, and the weight of your illness feels like it's tainting your soul... whip out that list, and remind yourself that it's not ALL bad. In fact, there's a lot to be thankful for.

Now, I'm not saying to just count your blessings and it will ease your suffering; there's nothing I hate more than the "Don't worry, be happy" advice (which I get from a surprising number of people). But I do believe that we sometimes lose ourselves mentally in our symptoms, and we can add to the suffering of our illness. There are so many positive things in my life to think about.

I hope this helps at least one person. Then I could count that as a Bright Side of this blog! Post some of your own blessings in the comments below!

Wednesday, September 10, 2008

Mission: Gain Weight

My current mission, which is proving to be a challenge is to gain weight back to my normal old 128 pounds. I'm currently hovering around 116/117 pounds. I've been eating 3 big meals per day and tons of snacks. But I'm fighting against a freakishly high metabolism that runs in my family. Who knew that blessing would end up being a curse!

I'm packing on the carbs - bread, pasta and rice to help gain weight, and eating lots of protein to help aid in my wound healing process. But it's just not cutting it. I'm almost wondering what more I can do. Plus trying to eat at least some non-fiber rich vegetables each day. Luckily eating the foods I am currently eating does not cause me any discomfort, but it is hard to eat when stool is leaking out of a hole in your abdomen. Like some cartoon character that gets stabbed with a sword then drinks some water and it squirts out the hole. Ok, not exactly like that, but you get the idea. It's horrifying. Luckily that has improved greatly in the last week, so I'm trying to eat even more. But really, when your diet is limited to rather bland foods, it's quite challenging. I haven't put on any weight in 2 weeks. Not good. I'm going to have to ratchet it up a notch. Time to boil even more pasta... sure wish I could stomach fatty foods- I'd love something deep fried right about now. No such luck.

The Story So Far

This is my first post here on my new Crohn's blog, and let me preface it by saying that I'm creating this blog because I was inspired by another blog I came across: I'd Like to Buy a Bowel. Alicia's blog really cracked me up and it was inspiring to read how she can keep her sense of humour through all of the 'crap' that Crohn's throws at you. It made me feel like I wasn't so alone... to read someone else's honest story. So I figured if there was a chance that my story might help someone in a similar way, it's worth doing... that and the fact that I find writing to be highly therapeutic. As evidenced by my endless journals.

Anyway, my Crohn's saga (cue Star Wars music) began about two months ago, but prior to that I suffered for about 7 years under the un-diagnosis of IBS (Irritable Bowel Syndrome). Sometime in mid July I got what I thought was a flu. Fever, vomiting, felt horrible. I was barely keeping any food down, and watching my fever hit alarming new highs when I discovered a pain in my lower right abdomen, and a strange bump. Worried, I went into the hospital where I stayed for a few days and received all manner of tests including, the key diagnostic test- a colonoscopy (which by the way, wasn't so bad, I was unconscious the whole time). The on call GI doctor, who did the test, and asked me a bunch of questions about my 'IBS' history, informed me that I had Crohn's in a section of my small intestine. He couldn't get into it with the colonoscopy because it was so inflamed. He prescribed me 40mg of Prednisone once per day for 4 weeks, tapering off by 5 mg per week after that. The antibiotics given me at the hospital cured my fever, so they sent me home.

A few days later I was back in the hospital with sever pains... but I was given a new pain medication - Percocet - and told to give the Prednisone time, then sent home. Over the next couple weeks I started to feel slowly better and better. But by the middle of August the pain was getting quite bad, and I stared to notice a visible bump in my abdomen where the pain was. And I could feel something round and swollen in there. Then my fever started to rise and I noticed my heart rate was up. So it was back into the hospital for me.

Turns out that a perforation in my inflamed section of small bowel formed that when to the abdominal wall (skin). This is called a fistula. My body formed an abscess around it and that was the round ball. A big 'ole ball of pus. Lovely. My body was trying to wall off the hole and protect the rest of my body. I was told that it was about 5.5 cm in diameter and had to be drained. I was in agony.

An attempt to drain it via needle and ultrasound was a failure, it was infected and too thick to drain that way. A sample was sent for testing, and I was given lots more antibiotics, and told I would need surgery to drain it! My first surgery ever!

With the support of my wonderful boyfriend and my family... I went in for surgery and it was a pretty interesting experience. I was totally knocked out and woke up feeling sore and disorientated and my throat sore from the air tube. The next day I was given more anti-biotics and informed that I now had a bunch of gauze stuffed in a hole in my abdomen. This is to keep it open so that it heals from the inside out. I was sent home and they hooked me up with a home-care nursing service that now comes once a day to change the gauze packing, and my bandage.

My first day home was a big shock when I discovered (disclaimer- gross stuff coming up in this paragraph!) that there was not only blood, but stool coming out of my wound and leaking out the bandage. A call to the surgeon confirmed that this was normal, as the fistula was still there and it hard to heal those. The hope is that the leakage would get better and better. Gee- nice of them to warn me about this ahead of time. It was quite a shock, and really put a damper on my appetite. Not good, since I've lost 13 pounds, and need to gain it back.

It has now been about 3 weeks since the surgery. I was prescribed a new anti-inflammatory now that the Prednisone is almost tapered off (down to 10 mg this week!), called 5-ASA. I'm feeling pretty damn good. The pain is low, I'm eating. The bowels are moving regularly and solidly, and the wound appears to be healing and the leakage is getting less.

On the down side, it appears that the Prednisone is having horrifying side effects. Early on, when I was at the 40mg I was getting heart flutters and insomnia. Now those are gone but instead I've noticed my hair is thinning. It's frightening, and makes me even more sure that Prednisone is not as viable an option to me in the future. I'm just praying that the hair loss stops once the Prednisone is totally done, and that it comes back!! *cry*

Yesterday I had a different nurse fill in for my regular nurse (who I'm getting rather fond of and attached to- she so nice!). This new nurse is a wound care specialist and she said that gauze is like, so old school, and that she was going to pack me with a new product that contains silver in it and fights infection and encourages healing much better. It's called Silvercel. She said that with this stuff I'll only need a nurse every other day. She also said in 3 weeks I should have seen faster healing- so this will help. Today.... more than 24 hours later, I don't see the shadow of blood through the bandage like I have every other day, and didn't have to change the outer dressing myself. So maybe it has helped reduce the leakage. That would be great! I'm curious to see it when the nurse comes tomorrow.

So... that's my situation. My GI doc wants to send me for more tests once this wound has healed. And the 5-ASA is my medium-term treatment for now. It turns out I have some hardening of that section of bowel, so it may have to come out within a year or two. That's very scary! Thankfully, my boyfriend, family, and friends are all being so amazingly supportive. I couldn't do this without them!

Stay tuned... the saga continues...