Parting Ways with my "Frenemy" Prednisolone

Today marks day 4 of parting ways with my ‘Frenemy’ Prednisolone. So far, (touch wood), things are okay.

A friend of mine has recently had Prednisolone suggested to her by her medical team for her condition. I laughed and sent her my previous blog post on my Frenemy. That got me thinking about all of the side effects I’ve had over the past 4 months and thought that for fun and giggles, I would do a “round-up” of everything that Prednisolone did to me.

So starting with the ones that made their appearance early on, here it goes:

Severe Insomnia - This was the first one to raise its head. I’ve had this when I’ve been on short courses of Pred for asthma, but that was only for a week or so. I’ve never been a particularly good sleeper, but in all seriousness, I think I had five full nights (meaning more than 6 ½ hours) of sleep in the first three months I was on the Pred. I didn’t get any proper sleep until I dropped the dose to 10mg. As I’ve said in a previous post, sleep deprivation is a form of torture.

Collapsed Veins - Normally, my veins are pretty prominent, especially on my hands and on the inside of my elbows. Several times while having blood taken at the hospital, I’ve had the veins totally collapse. So, they would have to do it again, which leads to the next one.

Bruising and Easy Bleeding - My shins have sported a rather colourful collection of bruises. So has the rest of me, but my shins have really had it, mostly from colliding with table legs when I’m getting up. What would normally only give me a small bruise was giving me whoppers. If I cut myself (which fortunately, didn’t happen often), it bled like crazy, and I normally stop bleeding pretty quick. And everything took ages to heal. The fact that I’m generally pretty clumsy really didn’t help these two.

The Munchies - This one has been a bit in and out with me. Initially, this kicked in for a few days while I was in Paris (it was the smell of cheese every time I walked into the supermarket that did it), but everything I was eating then hurt. And all I could think about was food. That was a very bad combination.  Then the munchies went away for a while, and I didn’t have much appetite for a few months. It only kicked back in when I got the dose down.

Unbearable Thirst - I drink a lot of water anyway as my asthma inhalers make my mouth dry. But I was drinking loads. And loads. And loads. Not totally a bad thing, but the thirst was insatiable. And despite drinking that much water, I always seemed to be dehydrated.

Mental Health Problems - This has been pretty well documented throughout the life of this blog. The general mood swings kicked in around the end of week 2, but then it wasn’t long after that the real problems began. To sum up, I’ve had manic energy, “Pred rage”, deep depression, visual hallucinations (which added a new layer to my already damaged body image), obsessive thoughts, severe anxiety, full blown panic attacks, and some very very dark and deeply scary thoughts that even freaked out this slightly-gothy darkling. Plenty enough to have me Sectioned under the Mental Health Act. I’ve fought tooth and nail to regain my mental health. The worst of it was gone by the time the dose was dropped to 10mg, but I think it will be a while before I’m truly in the clear from all of this.

Chipmunk Cheeks - The British tend to say “moon face”, but I like “chipmunk cheeks” because that’s what they looked like. Everyone kept saying how well I looked when this kicked in around week 3. What they didn’t notice that weight was dropping off the rest of my body at the same time. Fortunately, this one is beginning to go now and I’m looking a little more like myself.

Joint Pain - The pain in my upper back has been awful, and at one point around week 4, every bone in my body hurt. It’s hard to know how much of this was the Pred and how much was the Crohn’s, but it hurt way more than my tummy. And I’ve spent a ridiculous amount of money at the osteopath as a result.

Difficulty Making Decisions - This really came in around week 4. Even simple decisions were taxing. This is what eventually drove me off work. I make serious, life-changing decisions with people in my job. If I can’t do that, then I’m not “fit-to-practice”. This didn’t start to pass until I got the dose down to 15mg.

Losing Train of Thought Mid-Conversation - Okay, this is something I do a lot anyway, but I was doing this way more than normal. I didn’t notice that I wasn’t doing it any more until a friend pointed it out to me when I dropped the dose to 10mg.

Muscle Weakness - Granted, thanks to the malnutrition from the Crohn’s, this was happening anyway, but I was really struggling to lift and carry anything. This also affected my legs and between this and the oedema from the Crohn’s, getting up and down the stairs was difficult, never mind walking any great distance. This is slowly coming back, but I’m really having to work hard at it.

Oral Thrush - Nothing like thinking that you’re coming down with something to check the back of your throat in the mirror and have it covered in little white patches of gunk. And it’s not just your throat. It’s on your tongue and the roof of your mouth too. Lovely. Fortunately, my GP gave me some Nystan to treat it, which worked like a charm.

Tremors - The mental health stuff was bad enough, but this was when the side effects started got really frightening. My hands would shake uncontrollably that I struggled to write and sometimes to even use a spoon. This was when I had to give up driving for a few weeks. It was a brutal way to learn what people with Parkinson’s live with every day. Fortunately, this went away when I dropped the dose to 20mg.

Ovaries Shut Down - Despite having had a hysterectomy, I still have my ovaries, and usually still have phantom periods every month. Those stopped with the steroids and my ovaries seemed to go for a three month long sleep (at least part of me was sleeping!) And my boobs shrunk, and not just from the weight loss. And I mean, they really shrunk. When I dropped the dose to 10mg, my ovaries started waking up. At 5mg, I had a phantom period. Ow. And my boobs suddenly came back. So much so that I’ve had to buy two new sets of bras within 4 weeks, which cost me a total of £112. Double Ow.

Acne - I had really bad acne in my early teens. I mean, really bad. To all those well meaning adults who told me I would grow out of it, I’m now in my late 30s and I still get it. And when the dose was dropped to 20mg, it came back with a vengeance.

Nails Growing Like Weeds - My nails grow fast anyway, much to the disgust of women who wish they could grow theirs. But I was pretty much having to cut them off completely every week they were growing so fast. And they were breaking easily too, and normally the only nails this girl breaks are steel.

Hair Loss - My hair started coming out in clumps by the time I had been on the Pred for 3 months. And I mean big handfuls every time I washed it. And even more when I combed it. And I keep finding hair everywhere in the house. Fortunately, I have a lot of thick hair, but it’s all falling out of the top, which made it look a bit odd. So not only is my hair falling out, my lovely hair dresser had to cut a lot off the length to make it less noticeable. In fact, it is now about half the length it was when I started on the Pred. But at the end of the day, it’s only hair.

Unwanted Hair Growth - So while the hair is falling off my head, it’s growing in places I don’t want it. Up the side of my neck, down the side of my face (which fortunately is only noticeable in very strong sunlight), and joy of joy, up my back, which I only found out when my osteopath looked at my back and made a slightly disconcerting noise. “What?”, I asked him. “I’m not sure you want me to tell you,” he said. “Oh, go on,” I said. Then he told me what he saw. I had a good look in the mirror. All I could do by this point was laugh. It’s disgusting and I’m self-conscious about it, but really, it’s the least of my problems. If it doesn’t fall out, I can always get it taken care of.

The only main side effect I didn’t get was weight gain. I had the opposite.

On the up side, it treated my eczema!! A rather extreme way to do so, but my skin didn’t trouble me all winter. Now that I’m off the Pred, it’s back with a vengeance. At least that’s a return to normalcy. And strangely, I’ve not had a Raynaud’s attack all winter. I know that it has been very mild this winter, but I still find this odd as my fingers have gone white when the temperature is 10C. That may or may not have to do with the Pred, but it’s strange all the same.

And to be honest, as truly horrible as these side effects have been, the reality is that my ‘Frenemy’ saved my life.

Even More Experiments with Sweet Potatoes

I’ve been trying to think of new and creative ways to serve up the very limited amount of veg that I’m allowed. I tried a few new things with Sweet Potatoes this week.

One was using this recipe to make Sweet Potato Wedges - http://www.bbc.co.uk/food/recipes/sweetpotatowedges_83345.

I heated the oven to 200C, and peeled and cut up a sweet potato into wedges. I brushed a bit of olive oil on them, then sprinkled them with salt, pepper and dried thyme.

Then I roasted them for 20 minutes.

 They were rather tasty with the leftover turkey I had in the fridge.

Today, I got adventurous and made Red Pepper and Sweet Potato Soup using this recipe - http://www.bbcgoodfood.com/recipes/824633/sweet-potato-and-red-pepper-soup

Peppers are one veg I like, but I was told that they were not “low-residue” because of the skins. After a chat with a friend about how to peel a pepper, I gave that a go, adapting these directions - http://www.bbc.co.uk/food/techniques/de-skinning_peppers

I peeled and chopped up a sweet potato and put it in a roasting dish. Then I de-seeded the pepper and cut out the white bits. I put them skin side up on top of the sweet potatoes, and brushed everything with a bit of olive oil.

 I roasted the lot for 45 minutes at 200C.

When they were done, I used tongs to put the red peppers into a resealable bag and sealed them up. I left that to sit for about 10 minutes until the red pepper was cool enough to handle.

Then I peeled the skins off by hand. They generally came off pretty easily, but my hands got so messy that by the last piece, everything was just sticking together.

I put the veg in a pot and added some onion granules and about ½ tsp of cumin. I added about 300ml of vegetable stock and brought it to a boil.

Then I took it off the heat and blended it with the hand blender.

It was pretty good, but I think I added too much liquid as the soup was rather thin. I’ll have to cut that down next time.

What Having a Hysterectomy Taught Me About Crohn’s Disease Part 10 - Your Illness Doesn’t Just Affect You

I touched on this issue in my last post in this series, which was about pain. In that I talked about how difficult it is for other people to see you in pain and how, effectively, your pain affects them too. Trouble is, that extends well beyond pain.

Some of the ways your illness affects others are obvious. I used to live with a Type 1 diabetic, and my kitchen cupboards were full of diabetic friendly food like whole grain pasta, brown rice and Splenda, and it was rare that I ever baked anything fun not diabetic friendly. When he left, those items quickly left my cupboards. Especially the brown rice, which I think is truly foul. And it doesn’t matter if whole grain is healthier than white, for a Crohnie, it is most definitely the other way around and frankly, brown rice just tastes awful.

Some of those ways are not so obvious. While doing a “first-trip-to-the-supermarket-after-moving-in-together” shop with an ex, I threw not one, not two, not three, but four packs of Always sanitary pads into the trolley. “Are those on offer?”, he asked. “I wish”, I said, “that won’t last the week”. The look on his face was priceless. The look on my face said, “Welcome to my life, mate!” In hindsight, I find this story pretty funny, but if you looked at the price on the till receipt, and know that you have to plunk that out every single month, you would know that there wasn’t really anything funny about it.

Other things are anything but funny. I never bought bed sheets in colours other than black or navy blue, and under the dust-resistant mattress protector, you will find the remnants of a pretty impressive stain from my pre-hysterectomy life. Bad enough when that happens in your own bed. Mortifying when it happens in someone else’s. And there was nothing funny about me being in so much pain that I could not get off the bed without help to go to the toilet, never mind to change those sheets.

But worse than that is when the strain of supporting and taking care of you begins to wear another person down.

Although there are practical things people can do to help someone with a chronic health issue, ultimately, they can’t fix it, and that makes them feel helpless, which leads to feelings of self-loathing. And they worry about you, and that turns from worry into full-blown anxiety. And sometimes that worry turns into outright fear and panic. And those things together turn into anger, resentment and eventually, depression. And you, as the person who is being cared for knows this, and feels horribly guilty for causing someone else so much distress.

I’ve not only been the patient in this dynamic, but also the carer. In fact, I’ve pretty much spent my whole life as a carer, even as a very young person. That’s nobody’s fault, life just happened that way. And that did impact me, and that experience has very much formed who I am today. I learned a long time ago how to deal not only with the practical side of caregiving, but also how to deal with the emotional strain and uncertainty of long term health issues. As it is so much of my “normal”, I often forget that not everyone has that experience and coping strategies behind them. It’s a lot harder for who have never done it before, especially when they aren’t well themselves.

Despite this experience, I don’t think that I’m full of any great wisdom about how to cope with caring for someone. Ultimately, everyone is different and you need to find out what works for you. But what I will say is that self-care is extremely important. If you don’t take care of you, you can’t take care of anyone else. And it’s okay to feel overwhelmed. That doesn’t make you weak, or incapable, or a less caring person. It makes you human. And when you feel overwhelmed, you need to talk to someone about it. If you don’t, you’ll implode. And that can be pretty messy.

Happy Hysterversary to Me

Today marks five years since I parted company with my uterus, cervix and fallopian tubes. Five years on I can still say hand on heart that it was the best decision I ever made. It gave me my quality of life back in many ways, and I enjoyed four years of pretty good health until this whole Crohn’s business started last year. 

In previous years, I’ve marked it with celebrations. On my first “hysterversary”, I hosted a big dinner for some friends who supported me through it. I had plans to mark this year’s milestone, but that got thrown down the kibosh by a variety of things; including not knowing how I would be feeling far enough in advance to go travelling anywhere, post-Humira injection yucks, a phantom period and a set of other circumstances which are out of my control. That last one has kind of knocked me back down the rabbit hole I had almost climbed out of. 

I so need to get me this t-shirt!

All I managed to do to mark the occasion was make some dairy and egg free chocolate cake. So I’m going to eat it in my own little one woman celebration.

Back to the Grindstone

This is a grindstone. My nose hasn't touched it yet.

I went back to work this week. Part time, but it’s back to work. It’s been nice to see people and feel like there is a bit more structure to my day. I haven’t been back long enough for the workplace stresses to sink in yet, I’m sure it won’t be long.

The only thing that is rubbing me up the wrong way is that EVERYONE has commented about my weight. “You’ve lost weight!”, “Wow, there’s hardly anything left of you!”. No fucking kidding. I’ve unintentionally lost about 2 ½ stone since last summer and virtually nothing in my wardrobe fits. I am now what Newfoundlanders lovingly call "a fart in the mist".

I don’t need constant reminders about it, I get one every morning when I’m getting dressed. Some women would celebrate at losing that much weight and would see that as permission to go out and buy a whole new wardrobe. But I hate to shop, especially for clothes. And I seriously don’t recommend Crohn’s Disease as a weight loss method.

I did break down last Friday and go out and buy some new work clothes, as I realised that almost everything I have makes me look like a drowned rat. I find clothes shopping a self-esteem destroying exercise at the best of times, and I’ve been avoiding it like the plague these past few months as my new found body image complex just couldn’t face standing in front of full length mirrors. It really pains me to even write that, as I’m so not someone who normally worries about their body image. Unfortunately, I’ve still not quite come to terms with this “new normal” just yet. My one bright spot in that self-esteem destroying exercise was trying on a pair of bootcut jeans at Marks and Sparks and them being too tight in the thighs. Believe it or not, that made my day.

On top of that, I can’t justify spending a lot of money on clothes at the moment because my shape keeps changing as I slowly regain weight. You know those new bras I bought a few weeks ago? I’m already ballooning out of them and am sporting the double boob look. £56 for one months’ wear. No one said that Crohn's was cheap.

Pudding Pops

Anyone remember this?

 

I’m totally dating myself, aren’t I?

Jell-O Pudding Pops were one of my favourites when I was growing up. I was very sad when they seemed to disappear from the freezers at the local supermarket. But at least you could still get Instant Jell-O Pudding, so you could make your own.

But now I live in a land where Instant Jell-O Pudding doesn’t exist, and no one has ever heard of a ‘pudding pop’. In fact, ‘pudding’ has a wholly different meaning. Instant Jell-O Pudding is one of the most sought after “home foods” amongst Canadian Ex-Pats. I still have a few boxes in the cupboard, but alas, my attempts at making it will dairy alternatives haven’t been brilliant.

So imagine my glee when I came across this recipe - http://silk.com/recipes/creamy-fudge-pops

With spring well upon us in England (sorry Canadians!), it’s time to start thinking about summer snacks, so I gave these a go. As my ice lolly maker only has room for four, I cut the recipe in half.

I used 1 cup of unsweetened almond milk, 1 ½ tbsp of cocoa powder, 1 tbsp of corn flour and 1/2 tsp of vanilla.

Cheers to the friends who gave me the awesome cook's mug for Christmas!

I mixed the ingredients in a saucepan, and cooked it over medium heat, stirring it (mostly) constantly for about 4 minutes.

Then I spooned it into the ice lolly moulds.

A bit messy!

During the obligatory finger licking that comes with cleaning up the spills, I thought that it tasted pretty yummy, but rather bitter. As I like bitter chocolate (I will happily eat unsweetened chocolate), this was not a bad thing, but it was odd in a pudding pop. Then I realised that I forgot to add the sugar.

Despite getting the Prednisolone down to 5mg this week, I clearly still have Pred brain! So back in the pot it went so that I could stir in 1/4 cup of sugar, then I put it back in the mould (involving more licking up spills).

I let them freeze overnight.

They are rather nice! Not quite Jell-O Pudding Pops, but a bloody close substitute!

Endometriosis Awareness Month Part 2 - In Praise of Endo Women

Words can not explain how important other “Endo Women” have become in my life. They were an incredible source of strength to me throughout my journey to having a hysterectomy and continue to be a source of support in my life.

“Endo Women” are a special lot. Most are directly affected by Endometriosis, some are affected by other forms of chronic pelvic pain like Adenomyosis and Fibroids. Regardless of the official medical diagnosis, what unites us is our experiences with enigmatic conditions, our experiences of pain and our common tenacity to do battle against the odds.

My first experience with Endo Women was when I was still living in Canada. A monthly support group ran at the local women’s hospital. I’ve never been one for “support groups”. It really wasn’t my cup of tea and I really didn’t know what to expect. But I was stuck in a terrible battle with gynaecologists trying to get them to take me seriously, and I needed all the help I could get.

I didn’t say much at the first meeting, but was made very welcome by the group leader and the others, and I spent two hours absolutely mesmerised by the experiences people shared, but more so by the amount of personal strength each and every one of those women demonstrated.

Endometriosis is a condition that has no boundaries. There were women there from every ethnic and cultural background, every class distinction and level of educational attainment, straight, lesbian and bi, all ages ranging from 17 to 50. Everyone one of them was doing battle with both their bodies and with a medical system that didn’t understand them. In a rare moment of belonging, I fit right in.

I learned so much from them. What could go wrong and what could go right. Who the doctors worth seeing were and who wasn’t worth your time. What treatments to stay away from. What to ask and say to a doctor and how to stand up for yourself. My inherent scepticism learned to give alternative and complementary medicine a chance. I came to appreciate that everyone’s experience is unique, has value and needs to be believed. My dark sense of humour came to appreciate that there were conversations Endo Women could have together that we could never have with anyone else.

There was a sense of camaraderie that was difficult to describe. There were times when we would laugh hysterically (sometimes in bad times, there is nothing else you can do), other times when we shared incredible joy (especially with those who had been experiencing infertility who were finally realising their dream of parenthood), sometimes we shared anger (usually at the medical system) and many times we shared tears. Tears of anger, frustration, sadness and loss. Lots of them. 

I learned a lot about myself through these women. Most importantly, I learned that I was not on my own and that although everyone’s experience is unique, there were common threads that united us. I found a lot of personal strength in that. Their experiences also helped me to keep perspective on mine.

I’ve connected with other Endo women since coming to the UK. When there was a support group in my city, I spent the first meeting canvassing every woman there about who their consultant was and what they thought about them. That’s what finally led me to a consultant who actually believed how much pain I was in.

Face-to-face support groups have been a bit more limited over here, but I made good use of online forums for both Endo and hysterectomy. A bit more caution needs to be used in the online world as not everyone is necessarily as they would be in person, but these women were a fountain of information. I’ve met some amazing women through these channels, some of them have become very close friends.

Although there is technically a support group for IBD in my community, it hasn’t been active for quite some time (the perils of health related support groups, it depends on volunteers whose health is about as good as yours!), and my experience with online IBD support hasn’t been brilliant. Although there has been some useful information shared (you mean, I’m not the only person who had a bad reaction to Azathioprine?!), I have generally found people on IBD forums to be a bit negative. Endo Women, while even at their worst, seem to be able to pull together enough strength to have at least a bit of positivity, and failing that, are at least able to roll out the tea and sympathy.

In my darkest hours, Endo Women have walk me through my journey, and at times, almost carried me. I’ve been extremely privileged to know each and every one of them.

What Having a Hysterectomy Taught Me About Crohn’s Disease Part 9 - Pain Changes People

If it’s possible to say that a person can be on good terms with pain, then that’s what I was on the years leading up to my hysterectomy. Despite being reasonably pain free since having the hyst, I will never EVER forget what that pain felt like. It’s not only emblazoned in my brain, but still emblazoned in the muscle and nerve memory of my pelvis, abdomen, lower back and upper thighs. Even thinking about brings back ghosts of what it felt like.

Pelvic pain became such a big feature in my life that I don’t even remember when it moved from being “just period pain” into being chronic pelvic pain. I do know that I first realised that the pain wasn’t just with my periods when I started keeping a pain and symptom diary in the hopes that it would help me be taken seriously by doctors. I remember looking back at it after a month of keeping it. What I wrote before and during my period and ovulation weren’t surprising, but the fact that I entered something in the diary every single day did surprise me.

Was I really in THAT much pain? Well, yes, clearly. Even if the daily pain was low grade and I could more or less ignore it most of the time, the reality was that I had a constant low grade pain in the same spot every single day. To some degree, it’s still there to this day.

There are many problems with pain as a symptom. Although it is your body’s way of telling you something is wrong, it can be equally non-descript and sometimes confusing. For example, when I had my periods, I often had horrible pains that radiated down the tops of my thighs, which I often described as feeling like someone had stuck a knife in them and dragged down the whole length of them. I found this pain harder to get on top of than the pelvic pain because no position (sitting, standing, lying down) was comfortable. The trouble was, there was nothing going on in my thighs. The pain was actually in my pelvis, it just radiated down those nerves, probably because there was just nowhere else for it to go.

One of the other problems with pain as a symptom is that the experience of pain is subjective. One person’s “pain” is another person’s “uncomfortable”. I’ve know people to say that they would grade the pain they were currently in as an “8" on a scale of 1 to 10 (1 being minimal, 10 being the worst pain you’ve ever experienced) while I then watched them walk out of the room. For me, the definition of an 8 includes not being able to physically move off the bed. Don’t ask what 10 is like. As I said, pain is subjective.

Pain also takes many forms. The pain and symptom diary that I kept at the time came with a handy graph of codes to log the “quality” of the pain. There were 56 different words to describe what the pain felt like. Until that point, I had never given that any consideration. Did the pain burn? Cramp? Was it cold? Was it hot? Prickly? Stabbing? Dragging? Gnawing? You get the picture. Pain in different parts of the body feels different. I don’t like needles, but I can handle them. That’s a different pain (sharp, pin prick = ow) to the chronic pelvic pain (deep, dragging, cramping, stabbing, gnawing, knife pain = fuck) or the pain I’ve had in my upper back more recently (tender, tight, sore, stiff = crap).

But regardless of all of this, the experience of chronic pain changes you. It’s difficult to quantify how, but it does. In discussing this concept yesterday with a friend, she pointed out the loss of identity that comes with the experience of pain. Pain can prevent you from doing the things you normally do (your job, your hobbies, hanging out with friends, anything), and over time, not being able to do what you normally would do becomes a loss of self. Before the hyst, I got into a habit of trying to cram everything in when I was having “good days” because I knew that “bad days” were just around the corner. I developed a mentality that said “you’d better do it now, because there will come a time in the future when you can’t do it at all”. I couldn’t (and still can’t) deal with that loss of self, so I would pack everything in, and probably didn’t help myself in the process.

I also became expert at hiding the amount of pain I was in. I could put the "happy face” and could stubbornly still go about my day working or whatever, making like everything was okay when I all I could really think about was when I could take my next dose of co-codomol and the date I had set with my bed and two very hot wheat bags. I remember when one of my  good friends “outed” herself as a fellow “endo woman” at work one day. “You have that look, it’s in the eyes. The face says happy; the eyes say pain. I’m wearing that face too,” she said with a big smile. I wore that mask in public consistently for almost 20 years. It was only in the last year or so before the hyst (bar the occasional slip before that) that the pain was so intense that I couldn’t hide it so easily anymore.

Pain? What pain? I'm wearing my happy face!! Happy, Happy, Happy! Bloody hell, hand me my painkillers!!!!

Pain changes your relationship with your body. If anything positive came from the experience of chronic pain, it was that I learned to “tune in” to my body. But it also meant that I stopped trusting it. It betrayed me often. It’s still betraying me.

Pain changes your emotional world as well. When you have good days, you live with the constant anxiety of the bad days to follow. You worry that you will have a bad day when you need to be doing something really important. You always worry if this will be the time when you can’t carry on and the pain will overwhelm you. You worry whether or not you have enough pain medication to see you through. You worry that the medication will cloud your brain so much that you make that fatal error at work or driving your car. You worry that it will never ever end and that you will never see light at the end of the tunnel. Eventually, that pain and anxiety becomes self-doubt and self-loathing and turns into depression. Being in constant pain turned me into a moody, grumpy, self-loathing, anxiety-riddled bitch who wore a “happy face” mask. I never liked that woman. Still don’t.

Pain also changes other people around you. It’s very hard to watch somebody you love be in pain, because ultimately, there is very little you can do. I remember people telling me to get somebody to rub my back when the pain was bad. Frankly, that was the last thing in the world I wanted anyone to do. It set my nerves on fire and was anything but relaxing. The pain I was in was too deep for superficial touch. I just wanted to be left alone in bed having my own one woman pity party. The most compassionate thing anyone could do when I was in serious pain was to hand me painkillers and a glass of water (or alcohol) and warm up my wheat bag in the microwave and leave me be. My misery doesn’t love company. The only other thing they could do was listen to me when I wanted to talk about it.

Loving someone who is in pain leaves you feeling helpless. And frankly, the look of helplessness on other people’s faces when I was in pain just made me feel guilty for making them feel like that. And when you feel helpless, it erodes your self-esteem, meaning that all of that anxiety, depression and self-loathing you experience as a result of pain spills over to those around you who also experience anxiety, depression and self-loathing because they feel helpless that there is almost nothing they can do. I’ve been on both sides of this and can honestly say that it’s a shitty cycle to be in.

I keep being asked if I’m in pain with the Crohn’s. Comparatively, no. It hasn’t even begun to touch the pain I used to be in. Uncomfortable, yes. Painful? Not really. The trapped wind can be really painful, but I know that will pass once I can get it out. I’ve had a few paracetomol here and there, and I’m on good terms with my wheat bag, but at no time have I been wanting to raid my stash of (probably now expired) co-codomol. Truthfully, the pain section in the current food and symptom diary I’m keeping is full of references to the back pain I’ve been having rather than anything in my guts.

But the ghosts of my previous experience with pain are still there. A lot of the anxiety I’ve been having is steroid induced, but some of it isn’t. I still cram too much into my good days and fear the bad. I am struggling with the loss of identity of being off work and not being able do things I normally do. I still wear that “mask” in front of other people. And I still feel guilty for making people around me feel helpless.

Campfire Food from the Oven

As there are daffodils springing out of my garden, I think it is officially time to say that spring has come to England. Until winter returns next week, but this is England and the weather is always changeable.

This time of year always gets me thinking about plotting camping trips. Whether or not I will make it far in my tent this year is yet to be seen, but it is nice to think about. Last week, this got me craving “camp food”. Now this takes many forms in my world, and often involves cooking over open fires, which generally isn’t allowed in the UK, but fortunately I was able to adapt it to my oven.

For no particular reason, I found myself fancying a “tin foil dinner” or “hobo dinner” as some like to call it. I have no idea why, but it was what I fancied. I had some turkey mince out of the freezer, so it seemed a sensible thing to make.

I peeled and cut up a potato and carrot into thin slices and placed them on a piece of heavy duty foil. Then I took about 100g of turkey mince, mixed in about 1 tsp of onion powder, 1 tbsp of bread crumbs to hold it together, ground pepper and about ½ tbsp of ketchup. I formed this into a patty and placed it on top of the potatoes and carrots, and seasoned everything with a bit of salt and pepper.

I folded the foil over tightly and rolled up the ends to seal it.

Then I put it in the oven on a baking sheet at 180C/350F for 45 minutes. After that I opened it carefully and dug in.

I would say that it tasted like camp, except that it lacked the smoke infused flavour and half burnt state that cooking on a campfire brings. Ah, memories!

Adventures in Pasta Making Part 4

I had another go at making pasta last week. Part of the motivation to mess around with the pasta maker again was a big craving for Dairy-Free Alfredo http://foodlovingcrohnie.blogspot.co.uk/2014/01/experiments-in-pasta-making-part-3.html. Generally, this batch of pasta went okay until it came time to cut the strips of pasta into tagliatelle. It kept mushing itself together as I tried to cut it. I now realise that it was meant to dry for a bit before running it through that part of the pasta maker! It all stuck together, but it was still tasty!

I still had quite a bit of pasta dough left over, so I had another go at making ravioli, this time with beef. Being a kitchen gadget obsessive, I bought myself a ravioli stamp, and this seemed the perfect excuse to use it.

I used extra lean mince, and browned it in a bit of olive oil.

I then added onion powder, garlic powder, ground black pepper and oregano. Then I added some tomato puree and some breadcrumbs to hold it all together. Don’t ask for quantities, I just put everything in until it seemed right!

After mixing that together, I then put it on one layer of pasta by the spoonful.

Lots of the meat kept escaping, I clearly needed something more to hold everything together! Then I put another layer of pasta on top and used the stamp to cut them.

Voila! Ravioli! Giant Raviloli!

I put them in boiling water for about 4 minutes until they floated to the top, drained them and served them with tomato passata.

I even had enough leftover for the freezer. Only enough for one more meal mind you. I have to say, making pasta from scratch is a lot of work for not a lot of leftovers!

More Experiments with Sweet Potatoes

Suitable snacks have proven to be one of the biggest challenges of this “low residue” eating thing. Technically, lots of snacks are “low-residue”, the problem is finding something that is reasonably healthy and that will agree with my guts.

One recommendation on a blog I follow, Courageous with Colitis, recommended “pita chips” http://courageouswithcolitis.com/eating-with-ulcerative-colitis-pita-chips/. I had a go with those last week, and they are pretty tasty. Albeit, no substitute for Pringles, but tasty enough.

More or less following her directions, I cut up a pita into wedges, brushed each side with a bit of olive oil, sprinkled it with sea salt and a pinch of paprika.

Then I put them in the oven on a baking tray at 180C for 8 minutes until crunchy. Pretty good, but they definitely need something.

I absolutely love humus, but chickpeas, along with all lentils, are out due to their fibre content. I would be very upset about this, except that I’m not a fan of lentils generally and chickpeas are pretty much the only ones I like. However, humus is one of those reasonably healthy (as long as you don’t put gobs of oil in it) snacks and I really like it. So I’ll pout about that, but not the rest of the lentil family.

In my search for more things to do with sweet potatoes, I came across this recipe for sweet potato dip http://www.health.com/health/recipe/0,,10000002002220,00.html.

I steamed a sweet potato to go with some leftovers last week, so I held back some of it to make this dip. I mashed up the sweet potato, added a tablespoon of Greek yogurt, 1/4 tsp of honey, 1/8 tsp of chili powder and a dash of sea salt.

It’s actually pretty good! I need to mess around with the seasoning a bit, but generally it is rather nice and I will be making this one again.

Another Attempt at Rice Pudding

I decided tonight to have another go at making rice pudding. My last attempt wasn’t exactly a success. http://foodlovingcrohnie.blogspot.co.uk/2014/02/comfort-food.html. Edible, but not a success.

I decided to try the stove top method this time. I had a scour around for a recipe using almond milk and that would only cook up a small amount (you wouldn’t believe how many recipes called for 7 cups of almond milk!!!). So I tried this one. http://www.meatlessmonday.com/recipes/almond-rice-pudding/

I left out the cardamon as I don’t have any, and I left out the raisins as I’m allergic to grapes (yes, seriously, I am allergic to grapes!).

I heated the almond milk as directed, then added the rice, cinnamon and nutmeg and gave it a stir.

The cinnamon kept getting stuck up the side of the pot

 It didn’t say whether or not to leave the lid on, so I did. Two minutes later, this happened -

Umm . . ..

Oh dear. So I took the lid off, and let it cook for about 15 minutes until most of the almond milk was absorbed.

I think this is what rice pudding is supposed to look like?

As dinner wasn’t ready when this was, I turned the heat off and put the lid on. By the time I scooped it into a bowl, it looked like this.

Looks like mushy Rice Krispies

It rather looked like soft Rice Krispies being mixed into marshmallow for Rice Krispie squares. Unfortunately, it didn’t taste like Rice Krispie squares. In fact, it tasted awful and the texture was worse, akin to mushy Rice Krispies. I tried adding some maple syrup, and that didn’t do it. And that’s saying something, because maple syrup fixes just about any dessert disaster.

So that was binned. And I had lemon sorbet for dessert instead.

Put Your Mental Health First

It’s a terrible pun to say that mental health has been on my mind a lot throughout my Crohn’s journey, but it has. Of all of the many side effects of the Prednisolone I’ve been dealing with, the mental health aspects have been the worst, and has rather dominated my life over the past several months.

Prednisolone has given me a painful, and at times, truly awful insight into the experiences of those with long term mood disorders. I have the luxury of knowing that the Pred is what’s causing the anxiety attacks and mood swing, and that they should go away once I'm off it. People with long term mental health issues don't have that luxury.

I decided after "falling down the rabbit hole" in January that I neede to put my mental health first. I had to make it my priority. I can’t fight the Crohn’s without it. Everything else will fall into place when it is damn well good and ready.

Mental health has been in the media a lot recently. Last night’s “Call the Midwife” http://www.bbc.co.uk/iplayer/episode/b03xl3j0/Call_the_Midwife_Series_3_Episode_7/ very much centred around various aspects of mental health, and in particular, the stigma around it. Although the series takes place in the late 1950's, it’s interesting to see how little about that stigma has changed. Mental health is something that people don’t like to talk about. In fact, there is a view that mental health is the last thing to still be “in the closest”.

Mental health has also been in the Canadian media recently with the “Bell Let’s Talk” http://letstalk.bell.ca/en/ campaign in January, which is trying to break down some of that stigma. George Stroumboulopoulos Tonight did a piece on several of his guests who have discussed their experiences with mental health and asking the very intriguing question about whether or not we are having the "wrong conversations" about the subject. http://www.cbc.ca/strombo/news/lets-talk-mental-illness And last week, there was this very moving eulogy given by Mary Walsh which is making the rounds. http://www.cbc.ca/strombo/news/mary-walsh-mental-health-eulogy

There is no question that mental health and physical health are connected. When I have the Pred induced anxiety attacks, they come with heart palpitations and tremors which leave me unable to even hold a pen, demonstrating full well that mental health can affect you physically. Of course, the inverse is also true. Some people with long term chronic health conditions go on to develop depression, which is understandable when you consider how their illness is affecting their overall quality of life. It’s a two way street.

I’ve become rather a fan of the blog Mind Your Body, which explores the connections between mental health and long term chronic illness. A really interesting recent post was on mood disorders and inflammation - http://opbmed.blogspot.co.uk/2014/02/inflammation-and-your-mood-2-way-street.html. They have also done some interesting posts on the role of stress in Inflammatory Bowel Disease - http://opbmed.blogspot.co.uk/2012/12/ibd-awareness-week-role-of-stress-part-1.html, http://opbmed.blogspot.co.uk/2012/12/ibd-awareness-week-role-of-stress-part-2.html

However, although physical health and mental health are connected, these two areas are not very well connected in the medical system. In fact, those two sides of the hospital almost never talk to each other, and when they do, its usually in a crisis. Despite being very open with the IBD team at the hospital about the fact that the Pred had an incredible impact on my mental health, no one there has ever asked me what I actually mean by this, how it is manifesting itself, or how I’m dealing with it. It feels a bit like there is a “not my department” thing going on. Either that, or I've been written off as "the crazy one". I have enough self-awareness and capacity to identify when my mental health needs attention and to call in appropriate support. I hate to think how someone without those would be managing.

Endometriosis Awareness Month - Part 1

March is Endometriosis Awareness Month. Although this blog is mostly about my journey with Crohn’s Disease, “Endo” played a huge part in my journey towards having a hysterectomy and still plays a role in my life five years on. As there is a lot of misconception about what Endo is, I figure that it deserves a few posts on this blog. Please note that none of this is medical advice, just my understanding and witterings about the condition.

For more formal information, Endometrosis UK is good http://endometriosis-uk.org/understanding-endometriosis, as is one of my favourite blogs - http://endo-update.blogspot.co.uk/2011/07/facts-about-endometriosis_22.html

Endometriosis is an enigma. It is a deeply misunderstood condition of the female reproductive organs and pelvis that can cause intense pain, heavy bleeding, sexual dysfunction and scaring. It is one of the leading causes of female infertility. It can also affect the non-reproductive parts of the pelvis, such as the bladder, bowels and uterosacral ligaments. It has also been known to affect other parts of the body, including the kidneys and liver.

Here's a not so pretty diagram

Endometriosis is when the cells similar to the endometrium inside the uterus show up in places they don’t belong, such as on the ovaries, in the fallopian tubes or attached to the pelvic wall. These clusters of cells can range in size from microscopic to several centimetres. When your ovaries send out the hormones to prepare your body to have a period, these misplaced cells do exactly what the endometrium does; it swells and causes inflamation, which can eventually lead to scaring. This is often known as adhesions, which as the name suggests, can “stick” various things together, such as attaching the uterus to the bowels.

One of the many problems with Endo is that the "gold standard" in diagnosis is laparoscopy, which means that the only way to officially diagnose it is through surgery. There are several obvious problems with this, as all surgery has risks, but one of the big ones is that it effectively comes down to the skill of the surgeon in knowing what they are looking for. For example, there is a common misconception that all Endo lesions will look like “chocolate cysts” as they are known, but in reality they can be red, pink, white or clear and easy to miss. Also, the lesions can be so small that they are not easily visualised with the current technology available. Most gyanes know how to do a lap, but not all gyanes really know Endo.

One of the most bizarre things about Endo is that the presentation of the disease has no correlation to the symptoms experienced. Endo is often talked about in stages http://www.hopkinsmedicine.org/healthlibrary/conditions/gynecological_health/endometriosis_85,P00573/. Broadly, stage 1 Endo is roughly classified as having few surface lesions in one place and minimal scaring; stage 4 Endo is classified as being widespread affecting many areas, with deep infiltrating lesions which have damaged the surrounding tissue and caused extensive adhesions. However, having stage 1 Endo does not necessarily mean that your symptoms are mild. You can have stage 1 Endo and debilitating pain. Alternatively, I knew a woman who had hardly any symptoms at all and was diagnosed with stage 4 Endo during infertility investigations. As I said, Endo is an enigma.

The cause of Endo is ultimately unknown. Loads of theories abound, but ultimately, the cause remains something of a mystery. http://endometriosis-uk.org/causes-endometriosis

Treatment for Endo is a complicated subject. Many GPs will initially try to treat the symptoms using the birth control pill. If this works, great! If you don’t get on with the pill (like me), it’s not so great. The next line of treatment are heavy weight hormone treatments which effectively put you into artificial menopause. The trouble is that these drugs come with horrendous, and sometimes life changing side effects. I won’t get into the controversies about them in this post, but there are many. Surgery is generally seen as the best treatment option, but like diagnosis, this comes back to the skill of the surgeon. On top of that, cutting it out doesn’t mean that it won’t grow back, and it often does. Despite conventional wisdom, a hysterectomy is NOT a cure for Endometriosis. It might help alleviates symptoms for some women, but if the Endo isn’t removed at the same time, you still have Endo.

Lots of Endo women turn their back on conventional medicine for treatment and pursue complimentary and alternative treatments. I won’t get into those controversies in this post either. The bottom line is that it is very tricky to treat. Ultimately, like so many other long term, chronic health conditions like Crohn’s Disease, you need to find what works for you. We’re all individuals and what works for one may not work for another.

There are a lot of myths about Endo. I would write a post about it, but I think that one of my favourite blogs says it much better than I ever will - http://endo-update.blogspot.co.uk/search/label/myths

I’ll do a few more posts on this subject over the coming month.