SCD has started.

Since I took the pentasa I've been in a low-grade flare that I couldn't shake. Only going to the bathroom 2-3 times a day but not passing anything solid :\

I started the SCD on saturday and so far I feel, if possible, 10 times worse. Incredibly watery D, urgency, cramping.. all the rest of it. I also feel physically exhausted and achey.. like I've been exercising really hard. I am also mentally exhausted so if this doesn't make any sense blame the lack of food.

All you can eat on the SCD intro diet is home made chicken soup with pureed carrots and beef patties, all you can drink is water or diluted grape juice.

I must have only gotten around 600 calories the past few days, I've lost 10 lbs.

Even though I have D I need to move on to the next stage for my own sanity. That stage has things like chicken 'pancakes' and banana 'pancakes' soo... at least some variety!

So far this diet is the hardest thing I've done. My body is crying out for me to please eat something with carbs in it but can't.

back from summer!

I finished the course of prednisone and while I haven't started flaring again (at least, I don't think so) I have noticed some more reaction to certain foods I'm eating so in an effort to halt things before they spiraled out of control I tried taking some pentasa I had stashed away in case of emergency. Instant flare. The morning after I took the first dose I spent about half an hour in the bathroom with urgency, gas and all the rest of it. I persevered and tried another dose after breakfast that morning and had the symptom I hate most of all...going to the bathroom to pee and ending up needing to do more than that. Ugh. I stuck it out for two days, going to the bathroom to poop 6-7 times each day before I decided to give up.

I felt really depressed at this reaction to the pentasa. It spelled out the dreaded idea that immunosuppresants really might be the solution.

I'm determined to not let that happen to me though. It just doesn't make sense for me right now. I am sure that I will never again put my faith in a drug that is not well tested enough.

So I am going to try the SCD diet. It will be hard; I love all the forbidden foods. No more wheat, rice, potatoes, corn or sugar (any kind except honey) for me. This will probably be the hardest thing I have ever done but I try to remind myself that it was hormones and a change in diet which set me off in the first place so perhaps a change in diet will set things right this time.

I hope so.

ohhh prednisone

I don't usually weigh myself all that often but while taking pred I have been weighing myself once a day, usually at the same time of day and can I just say oh my god how did I gain five pounds in one day?

That's what prednisone does.

I can feel my bowel atrophying as we speak...

and other things you want to say to people but can't.

On prednisone things feel, different. Not too different but different enough. Also you are hungry, and thirsty ALL THE GODDAMN TIME which makes it hard to stay at a normal weight and the bonus is that prednisone slows down your metabolism so you gain weight no matter what you do.

I really don't need to gain any more weight so I've been trying to eat less carbs than I normally do (I've heard that carbs are the main culprit behind weight gain while taking prednisone) and working out/lifting weights every day.

The plus side is that I am going to the bathroom less and not seeing any blood. Pros and Cons.

yesterday was...

apparently yesterday was national crohn's and colitis awareness day. I was not aware of it...so I guess mission failed?

I am still not doing so well. We finally got hold of my GI Doctor who told me to start taking the prednisone at 30mg a day for seven days, then 20mg a day until I run out of pills.

I'm thinking about starting a family again and I hate feeling this pressure on me to do it when I get well. Can't I just enjoy life first? Ah, but..then you'll get sick again and they'll do surgery to remove your colon then you'll be infertile.

Yeah...there is that.

STILL no pred....

After four messages left with my GI Doc and one page sent directly to him while he was at home I am getting really pissed off. Is it so hard to just call quickly to say 'take 70 mg the first week then decrease by 10 mg', no it is not that fucking hard. Now I am feeling really crappy (the worst I have done for a while). I started a new book in the bathroom on Friday and I'm already half way through it, that's how often I've been in there. There's also the pain and the wonderful urgent 'get to the bathroom RIGHT NOW' feeling that I haven't had for so long. Frankly, I didn't miss it.

And I don't know what to do.

Still no pred...

I'm getting a little pissed off at my GI doc, I left him a message on monday telling him that he didn't tell me how to take the prednisone and the helpful directions from the chemist are to 'take as directed'. Gee, that's great, he didn't tell me how to take it...so shall I make up my own dosage? How about everything all at once..that should sate my angry colon.

I still need a name for it, Brian suggested Colin but I have too many fond associations of that name thanks to Colin Baker and his loveliness.

Waiting for a call isn't going to do any good so I will have to call again. I'm shaking my fist at you, world!

it's between shit and shitter

We spent at least 2 hours at the GI's office this morning and maybe only 10 minutes total with the Doctor. Oh, American medical system - how hypocritical you are.

He wanted to know how I was doing with the Asacol, not good I replied so he suggested immunosuppresants. That's like saying, Doc I'm a little bit itchy, to get the reply - how about we pour acid over your skin?. WTF?

He told me to do research, he said the side effects can be serious and you should find out for yourself. The side effects are fast malignancy in bone cancer that will be terminal before you find out you that even have it. Yay. He said do you still want to have children and when I said yes he said we should do it now (in his office.....kidding) and find an OB. I thought wow this stuff is freaking me out. He said I'll start you on prednisone and do the research on what you want to try next, I thought are you the GI or am I? I remembered that prednisone makes me both nutty and fatter than normal and the being chub makes me depressed. Nutty, chubby and depressed. What a winning combo.

We left the office and I was ok but the delayed reaction meant I had to try to stop crying while driving on a busy road...not quite a winning combo.

So now that I've done the research I think I'm not quite done trying the first line drugs rather than jumping straight to the immunosuppresants. I'll take the prednisone until I'm out of this flare and then try another 5-asa with more supplements and hope that works.

I should name my colon, what's a good name for an angry organ?

books in the bathroom

Today's confession: reading while on the toilet. I do it and have done it since I was about seven and struck down with some kind of terrible childhood stomach bug. Reading took my mind off the explosion that was happening in my guts and since then a good book in the lav is essential for me.

I went through a phase in my early teens when I was extremely germ phobic and the idea of leaving a book in the bathroom to get covered in poop particles totally grossed me out. I was convinced that I would become ill if I read while on the toilet so I desperately tried to break the habit. It worked for a long time and until I started getting the early symptoms of IBD I pretty much never read while in the bathroom.

Last week I started reading 'Mostly Harmless', the last book in the hitchhikers guide series by Douglas Adams. I finished it this morning. I'm a fast reader and it's not the world's longest book but it still made me feel a little sad that I finished it so quickly, given that I only read it while sitting on the bog. I think the last book is the easiest to read, for me the first ones were like trying to read treacle..just too many words trying to say too many different things! I'm still fairly disappointed by the ending though, it's obvious that the whole book is leading up to that moment and when it comes it's a little flat for me. I wish that he had left it open a little bit.

Now I'm reading 'The Andromeda Strain', which I have never read before but I did see the movie a long time ago and was suitably freaked out. Looking back, it's probably a really terrible b-movie kind of thing but when you're 11 they seem far scarier.

I've been taking the Asacol HD for a month now and if anything, my symptoms are worse, not a lot worse but still worse. I actually ran out of it a couple of days ago and I feel like I'm getting better without it but I have a follow up appt. this weekend to test my theory.

nine days of meds, 54 pills

I've been taking Asacol HD (it's a pill, not a television) for nine days now, that's 54 pills. 180 pills a month. That's a lot of pills!

Someone told me that the patent for Asacol is coming up soon, which means that the drug will be available to generic companies which obviously, is a big loss for P&G so they decided to try and market this new kind of Asacol tablet to extend their patent and hopefully get more money out of us. It's funny because the drug in the Asacol HD is exactly the same as the drug in regular Azacol (mesalamine) but at a different dosage per tab (800 mg vs 400mg) and on the box for Asacol HD it says 'not bio-equivalent to Asacol', so you can't just take double the amount of Asacol pills to get the HD effect. Apparently. I'm not a doctor so what do I know, I just smell something fishy.

So far I'm really not seeing any kind of difference, apart from the pill shells mysteriously turning up in the toilet bowl every morning. That's normal because the outside is made from some kind of indestructible acrylic that only degrades enough on the outside for the inside to be dispersed in the colon.

I'm really not sure if it's because I'm paying more attention to my symptoms that I'm noticing more things...or if it's because I have more symptoms. I had actual bend-over-ouch! cramping because of gas in my colon for the first time in years the other day. I've also been experiencing some dizziness which could be due to anemia. My follow up with the GI is in a few weeks so we'll see what he says about that.

I haven't taken the discount card to the pharmacy yet because I haven't had time to think about it with everything that's been going on in my final semester but I'm hoping that the discount card is not a one time only thing and that I can use it again.

The curse of the 'should have'

It's a lot easier to look back on the mistakes you have already made and decide how you would avoid making them again than it is to look forward in your life and figure out how to avoid making them in the first place.

Of course, I should have paid more attention to what was going on with my IBD, I should have continued taking the Pentasa, I should have gotten another referral from my Doctor to see the GI when I was feeling the symptoms but I didn't. So how do I avoid doing all this again?

It's so hard to say because I don't know what's going to happen in my life in the next six months.

Probably the best thing to do would be to go home to England, where I don't have to worry about not being able to afford to see a Doctor but...I like living in the US. I just worry about what it's going to cost (not in money, in life) to stay here. I know that UC is a 'do not insure this one' pre-condition, which they're not supposed to be able to do anymore (but they can still jack up your rates).

And it occurs to me that a life lived in regret is no life at all.

It's just so hard to try to stay positive when I have this hanging over my head, like a guillotine ready to drop at any moment.

introduction

Hi... I'm Sophie.

This morning I had a follow-up appointment with my GI Doctor to go over the results of a colonoscopy I had two weeks ago. The results were in: moderately severe ulcerative colitis in my entire colon. He prescribed me Asacol HD (some kind of fancy Asacol) and told me to follow-up with him again in four weeks time.

I barely held it together until I got out of the office where I proceeded to break down into a mucusy teary mess. How could this happen?

See, this isn't the first time I've been given this diagnosis. The first time was in May of 2003 when I was nineteen years old but I really didn't take it seriously at all. I took my medications until they made me feel better, then stopped, telling myself I was 'in remission' without any kind of medical proof.

So really today I feel supremely angry with myself for thinking that I wouldn't need to take these medications for the rest of my life. That's a bitter pill to swallow when you're 19 but it doesn't really get any easier when you're 26, it just becomes more 'real' somehow. More 'real' because you're thinking of starting a family and you realise that you can't just get pregnant, you need to meticulously plan everything and have to be in remission of the disease.

It doesn't help that I'm living in the United States right now (I'm a UK citizen) where health is treated as a for-profit business that hopefully benefits patients health as a side-effect, rather than the main event.

Luckily, my GI has given me enough samples of the Asacol to get by for 22 days, after that I have a discount card that should make the rest of my prescription only $100.

Of course, it doesn't help that stress and anxiety are my triggers for UC so the fact that I'm freaking out about not having medical insurance when I graduate in four months time is really not helping me.