World IBD Day

Today is World IBD Day. It's a day to raise awareness of Inflammatory Bowel Disease, the primary forms of which are Crohn's Disease and Ulcerative Colitis. Crohn's and Colitis UK are doing a social media awareness campaign under the hashtag #myCCUKstory asking people to take selfies with a short description of their story, including their age, location and a bit about their treatment.

It's meant to be "inspiring". Thanks to post-Humira yucks, I'm not feeling very inspiring today. I'm feeling more rubbish, exhausted and flu-y and like this is a good day to just watch Netflix. But as this blog is primarily about my journey with Crohn's, I figured I should contribute. As I don't like posting pictures of myself on this blog, Crohnie Bear and stepped into my place -

#myCCUKstory, #WorldIBDday, #fuckyoucrohnsdisease

It’s Not a Competition . . .

I deleted myself off a Crohn’s Facebook group earlier this week. As much as it was somewhat useful when I was diagnosed, I got really tired of the one-upmanship going on about who was suffering more than who. And while I do truly appreciate the bolshiness of people who post pictures of their recent surgery scars and ostomy bags on social media, I really don’t care for loads of those photos showing up in my News Feed. As someone who grew up with a parent who has an ostomy, I am in no way freaked out about them, I just really don’t care to look at them when the insomnia has set in at 4am.

I’ve had this experience with some Endo women as well. Most Endo women are absolutely brilliant and would never play the “one-up” game, but you do get a few who do. The reality is that we are all trying to cope, and some people are really struggling to do so, but we are all in the same boat and it serves no purpose trying to “one-up” each other. I know that some people have really big struggles with being taken seriously, especially with “invisible illnesses” like Endo, so they feel that they need to make everything really big to be heard. But seriously, I get it. You don’t need to do the “one-up” to prove to me that you are unwell. I already believe you.

One of the challenges with this “one-up” issue is that, like it or not, is that there is a hierarchy of illness, both in the medical community and in the wider community. By this I mean that certain illnesses get more “respect” than others. The number of charities for cancer are a good example of this. Not that I am in anyway diminishing the significance of cancer, I lost a very good friend to cancer two days ago. But as an example of this, she had ovarian cancer, which doesn’t get the funding or press attention of breast cancer. And because ovarian cancer tends to present with very vague symptoms (abdominal pain, severe bloating, being unable to get much food down - my, this sounds familiar!) and primarily affects post-menopausal women, it is often ignored until it is too late.

Inflammatory Bowel Disease, which includes Crohn’s and Ulcerative Colitis, doesn’t get a lot of attention because, well, they involve the uncomfortable subject of poop, and people really don’t like talking about bowels.

Illnesses that affect more women than men tend to fall further down this hierarchy and have loads more stigma attached to them. Fibromyalgia is a really good example of this. There is a particular camp of doctors who view the diagnosis as “fakers-myalgia”. The fact that it affects so many people (men included, by the way!) and the pain and fatigue for people who have it is very very real, doesn’t seem to matter to that part of the medical community. And unfortunately, a lot of that part of the medical community seems to work in rheumatology, where Fibromyalgia patients are often referred. Sigh. There was a really good episode on the CBC radio series “White Coat, Black Art” a few years back. It is well worth a listen. - http://www.cbc.ca/player/Radio/White+Coat+Black+Art/Full+Episodes/2011/ID/2170992213/

And despite the additional attention being given to mental health recently (in Canada, anyway), mental health is truly and utterly at the very bottom of this hierarchy.

This whole post really came about because I wanted to post a link to something written on one of my favourite blogs. The Mind Your Body blog is written by an American hospital psychologist who counsels people with chronic illness and much of the blog explores the connections between mental health and physical illness. It’s brilliant. One of the main authors wrote a very beautifully written rant on this subject this week, I encourage everyone to read it - http://opbmed.blogspot.co.uk/2014/05/chronic-illness-isnt-competition.html

What Having a Hysterectomy Taught Me About Crohn’s Disease #12 - Stop Telling People That You’re “Fine” When You’re Really "Phine" (Meaning That You're Not)

 I well remember the day that I stopped telling people that I’m “fine”. It was about 10 years ago, and I was at work in the lunch-room. I had my period and was in serious pain and was sitting with a super-hot wheat bag plastered to my abdomen, staring at my lunch which I couldn’t even begin to think about stomaching, and cursing that the two extra-strength Tylenol (paracetamol to you Brits) that I had taken had once again failed to do anything. I was on a waiting list to finally see a gyane to find out what the hell was causing the chronic pelvic pain and I did not have a good pain management regime.

On top of this, my father had the first of two heart attacks he would have within a 6 week period and he had a life-threatening reaction to the life-saving drugs he was given. I had gone back to university part time and was swamped under with course work. I was wearing too many hats in my volunteer life. My manager was being completely unsupportive, my two colleagues who were on my “team” continued to prove their uselessness quitting at the same time and dumping everything on me, and then the organisation changed my working pattern without consulting me. It was May, so my hay fever and asthma were flaring up, I was in serious pain and my mental health was slipping. Eight weeks later, I would tell my boss to take that job and shove it and buggered off to Nova Scotia with a friend for a few weeks to sort my head out.

“Hi, how’s it going?!”, a chirpy colleague says to me, entering the lunch room to warm up her uber-healthy lunch in the microwave. “Complete utter fucking shit”, was my response. The stunned silence and the look on her face said everything. I had broke two cardinal rules of Canadian social interaction. Not only had I broken the rules of being polite by not saying “fine”, I had also broken the rules by being bloody honest. Had I been living in England at the time, I would have also broken the rule of keeping a stiff upper lip. But the reality was that I wasn’t fine. I was anything but fine. And I hit the point where I couldn’t tell people that I was “fine” any more when I clearly was not. 

 A few days later, I was at a meeting with several other “Endo women” at The Endometriosis Network of Toronto (aka, TENT) when I shared this story. We had a few giggles over my breaking of unspoken social conventions and then the room went a bit quiet. Then one of the women very quietly said, “I wish I could just say that to people”. “Why don’t you?”, was the response from the group leader. And we all spent the rest of the evening discussing those unwritten social conventions and why we were afraid to just tell people the truth. We all came to the conclusion that we didn’t tell the truth because we didn’t think people wanted to hear it. They were just asking how we were because they wanted to follow the social conventions. And we all decided that night that we weren’t going to go with conventions anymore and were just going to give honest answers from now on.

This story has been on the brain this week for a few reasons. One is that it is almost ten years to the day when this happened. Another is that I am at another point in my life where I am very much not “fine”. The other is that it is Canadian Mental Health Week http://www.cmha.ca/news/its-mental-health-week-may-5-11-2014-tell-us-how-you-really-feel/#.U2pxc6LN4TA, and interestingly, "Fine or Phine?" is the crux of their campaign this year.

In a lot of ways, I’m a lot better than I was. Physically, things are much better. My kidney and liver function are back to normal, and according to the last batch of blood work I saw, I’m almost in “technical remission” from the Crohn’s. My back is much better, and I am in the “rehabilitation phase”. But anyone who has been through rehab (of any sort) will tell you that is the really tough part. And believe me, it’s tough.

And the horrible reality is that despite being off the steroids for 6 weeks now, my mental health hasn’t even begun to recover. So no, I’m not “fine”. In fact my response to the question “how are you?” as of late has either been “shattered”, because that’s true, or “utter shit”, because that’s also true. And that completely breaks British social conventions on several levels.

But you know what? I don’t care about breaking social conventions. I can’t pretend things are “fine” when this has been one of the worst 12 month periods of my entire life. I’m down the rabbit hole and can’t even see the way out, never mind trying to find a way to climb my way out.

At some point, we have to admit that our social conventions don’t help. It may make someone else feel better if I tell them that I’m “fine” or that “everything is much better”, but it’s not the truth. The reality is that having chronic illness sucks donkey balls and I wouldn’t wish what I’ve been through on anyone. And that’s the truth. And if you can’t handle the truth, then don’t ask.

Getting Even More Daring . . .

My frustration with not being able to eat dairy through this Crohn’s flare-up has been well-documented throughout this blog. I love cheese. I mean really love cheese.

Milk is something that I could give up, especially when I discovered that rice milk is actually quite acceptable on breakfast cereal. But the absence of cheese and yogurt left a big hole in my life for many months. It was a serious celebration when yogurt and cottage cheese and some cream cheese (like Dairy Lea and Laughing Cow triangles) started to go down.

Last week, I decided to get more daring and ordered some “proper” cheese on my grocery order. I do really like a good Double Gloucester, and I am very excited to say that it went down without consequence.

So that begged the question, can I stomach macaroni and cheese again? This is important for two reasons. The first being that macaroni and cheese is low-fibre and low-residue (unless you are of the no-dairy low-residue camp). The other is that I make a mean macaroni and cheese.

I will never understand the Canadian obsession with Kraft Dinner. My homemade macaroni and cheese is just so much nicer than anything that comes out of a box. And it takes about the same amount of time to make (and is made with real ingredients, not E-number filled powder).

So, on Sunday, I gave that a chance. Here’s my macaroni and cheese recipe. This is for one person, so obviously increase portions as needed.

Boil water for the pasta, then add a bit of salt and the macaroni.

While that’s cooking, melt 1 tbsp of butter in the microwave (I tend to use my big Pyrex measuring cup of this), which takes about 20 seconds on high. You can use margarine, but you will notice that the flavour won’t be as rich.

Add ½ tbsp of plain flour, and stir with a whisk. Add 1/4-1/3 cup of milk, and stir with a whisk. Heat it in the microwave for 1 minute.

Meanwhile, shred cheese of your liking. I like Double Gloucester, a good cheddar does well too. I usually shred a generous handful of cheese, but you can use as much or as little as you like. When the milk is done, stir it with a whisk, and put it back in the microwave for another minute.

Take the sauce out of the microwave and add some fresh ground pepper, a few dashes of paprika and a pinch of cayenne pepper (more if you like it spicier) and give it a good whisk.

 Then add the cheese a bit at a time and whisk in until it’s all melted.

 The pasta should be ready about now. When it’s ready, drain the pasta, then add it right to the cheese sauce. Give it a good mix, then transfer to a bowl. I like some more fresh ground pepper on it.

And voila. Macaroni and cheese.

How I have missed you! Especially as this is one of those recipes I have made so many times that I don’t even need to think about (I had to think about it to write this post!)

It went down reasonably well. My tummy was a tad grumpy about it, but it’s hard to know if that was the macaroni and cheese or the steak and chips the day before, but it wasn’t anything unmanageable.

So I got super daring when I bought groceries this week and got some Jarlsberg to try out . . .

Getting Daring . . .

I am an unabashed carnivore. I love good meat, hence why I schlep 15 miles round trip every couple of weeks to a really good butcher near the countryside. Alas, this whole Crohn’s business has meant that I have been mostly relegated to chicken and turkey, with a bit of venison and extra lean beef mince, for the past 6 months. Sigh.

However, this weekend, I really craved steak. A good proper, juicy steak. I haven’t had steak since last November. In fact, I can even tell you the exact date and place that I ate it. And I paid for it dearly for several days afterwards. But oh, how badly I wanted steak on Saturday.

My beloved butcher had already closed for the Bank Holiday when this craving hit, so I had to settle for a Sainsbury’s steak. Fortunately, they had their Angus beef sirloin on offer. If Scotland declares independence in the autumn and end up outside of the EU trade area for a while, the loss of Angus beef at a good price would be one of the biggest shames. One would think threats like this would get the English more interested in what is going on north of the border, but alas . . .

Beef in and of itself is not a problem with a low-residue diet, the problem is the fat and gristle content of the cut. I generally prefer leaner cuts of beef anyway, and my first choice for steak is usually rump, although sirloin is mighty tasty too. I have a friend who “likes a good chew” and will always go for the more chewy t-bone or rib-eye steak, but that has too much fat and gristle to go with the low residue thing. There was a good layer of fat on the sirloin I bought. I left it on to cook to get the flavour, but didn’t eat it (I never do anyway).

I like to marinade my steak for a few hours before I cook it. By the time I got home on Saturday, I didn’t have time to marinade it for long, but I still let it sit in marinade for about 20 minutes while I pre-heated the grill and did a few other things about the kitchen. My personal preference for a steak marinade is as follows (this is per steak, so increase quantities to reflect the amount of meat you are cooking)

1 tbsp of olive oil
1 tbsp of rice vinegar
1 tbsp of soy sauce
1 chopped clove of garlic
A bunch of peppercorns

Mix together and pour over the steak and leave it for a while, turning the steak once.

Now the garlic and peppercorns are not really allowed on low-residue, so I substituted the peppercorns with fresh ground black pepper. I still used the garlic, but just made sure that I took it off the steak before I cooked it.

 I will fully admit that I have developed a taste for bloody meat (not that I’m a goth or anything) as I’ve gotten older. Not rare, but medium-rare is beautiful. Alas, the low-residue thing always talks about “well-cooked” meat. I just can’t bring myself to cook a steak well-done, it’s just wrong, but I did leave it on longer than I would have liked.

I removed the steak from the marinade and cooked it under a medium-hot grill for about 10 minutes, turning once. This brought the steak to medium well. 

It was gorgeous! And I figured that if I was going to be daring, I was going to go whole hog and have chips with it too. Oh steak and chips, how I have missed you!

Thankfully, I did not have to pay a terrible price for this steak. Although my tummy was a tad grumpy about it, it generally went down very well. And I suspect that my iron levels are thanking me for it too.