MiXel VS Crohn's Disease

I have Crohn's disease.. And it's a bit frustrating.. But, it could be so much worse, and HAS been so much worse for me, so I won't complain. I'll give you a little history of events, so you can all go 'aww', and feel pity for me. ;) No.. I'll tell you because I want to. Oh, and if anyone reading this has similar problems, or did have, I'd like to hear from you, because talking can help both parties. I'd like to add that I really am not complaining here.. People have to put up with much worse than this. If I could choose to remove all traces of the disease from my life and past, I wouldn't. These things make me who I am, and I will live with them.

  • November 1996: Diagnosed as having Crohns, after months of speculation, and false diagnosis by other medical types. The consultant recognises it, and decides that it's so bad that it has to be operated on. At this stage symptoms include bleeding when passing solids (an unduly polite way of putting it) and severe pain. Also I experience very bad stomach aches, in three distinct varieties. I can feel the affected area, it's all inflamed.

  • January 1997: The operation.. Only six days spent in hospital when the staff told me to expect around eleven. Not much fun at all, but probably character building. :) Inbetween all the confused old men, the dodgy morphene that makes you halucinate, and the senile old guy next to me who kept trying to kill himself through stupidity, it was kinda, errm.. Educational? :) I'm sure this has left all sorts of emotional scars on me, but it's quite funny to look back at. Anyway, they chop out about a foot of my bowel, and my appendix. Then they staple me up, plug in a drain and a catheta, and basically leave me to get better before sending me home. I didn't get better, but I did go home! :)

  • Jan-November 1997: Fluctuating symptoms.. It still bleeds, it still hurts, I'm still constipated, I still get stomach aches. I start taking homeopathic medicine, and it appears to help! Well, it does in the short run. On occassions I'm even WORSE than I was before I had the operation. I have hospital checkups every six weeks, and they do bloodtests to look for traces that the disease is on the rampage again. November '97 brought an unwanted test result.

  • November 1997: Latest tests strongly suggest the disease is active, and doing something internally. Probably pretty much what it did last time, inflaming a section of bowel. This is positively GREAT news.. Crohns is not curable, so it can come back at any point after an op. The surgeons said to expect years, not months.. Oh well. No difference in symptoms, I have a bad patch in oct-november, when things get really stupid, and I have bad stomach aches a few times every hour.

  • Jan-March 1998: Arrgh! It starts off bad, I see the homeopath again (see her every six weeks) and question whether the silica's actually doing anything. She seemed to think it was. I'm not sure. Symptoms get worse, until... By some mad stroke of luck I get back in contact with most of my old school friends, and get an internet connection.. IRC sessions remove about half of my symptoms, and I finally feel happy. I stop taking Homeopathic remedies, I get my business Ideas sorted, and I hope like hell that this is not temporary. My stomach aches happen less, my bleeding is less, and the pain is almost half what it used to be. Attributing IRC to my fast recovery seems silly, I know. You probably don't believe me at all, but it is the truth, talking to people has made me happy, and being happy has decreased my stress, and that has positively effected my health. Crohn's is said to be a stress related illness, and I believe this to be the case. Hopefully now I'm on the road to recovery, but I doubt very much that I've seen the last of this thing. :) Looking on the bright side though, I'm not going to get appendicitus!

  • March 1998: I was slightly over positive when I wrote that obviously.. Symptoms now are better than they have been, but are still pretty bad on and off.. But I'm good all round anyway, regarding Crohns symptoms.. :)

  • April 1998: I've finally been to see a medical consultant! It took six months after being referred to a medical team to get an appointment. Hurrah. Yay! Arse! After his pretty simple examination, he says he's pretty sure I have active crohns, and he's very worried about my weight (7 stone). So, blood tests, and before the end of the month I'll have had a barium meal so they can scan me, then again on some other date, so they can probe me, and they need to take X-rays. He just wants to find the extent of the illness before giving me medication, and he'll be trying to restore my appetite. Then what though? Oh well, who knows..

  • May 1998: Whoah! Busy busy! Had the barium meal, saw on the scanner that there was something wrong. Not as much as there was before the operation though. Went for a Colonoscopy (where they look up and inside you with a long pipe thing) which didn't work at all, because however much they gave me to clear my bowels, it didn't work! Doh, and that stuff's all repulsive too.. I mean really.. It's very hard not to throw it up instantly. :/ Anyway, went to see the consultant again. I'm now on heavy steroids for at least a month, and maybe longer. This is to get rid of the inflammation in the bowel, and get rid of the stomach aches. I've been on them for less than a week, so I dunno if they're working yet. I'm bleeding more, and getting a lot more very bad aches.. But that might be coincidence. Oh, I'm also on Antibiotics, moving my tablets per morning ratio upto 9! My morning routine's getting surreal. :)

  • June 1998: Finally things look like they're improving.. The steroids seem to have done the trick in that I have an appetite, I haven't been getting many stomach aches at all, and I have energy.. There are lots of side-effects though, and I hope the stomach aches don't just come back once I stop taking the steroids. Oh well.. Bleeding is much, much worse, but that's a price I'm willing to pay at the moment, as the stomach aches were a lot more annoying. One of the stranger things that's new though.. I can feel the blood pumping through the palm of my left hand, all the time! And it's really irritating, and distracting, making it hard to type quickly. Grr.. :) Things are getting worse in other areas. the last month has been pretty stressful, but I'm glad to say that doesn't appear to have made the symptoms any worse.

  • Feb '99: Geez, where to start? :) Long time since i wrote in this little diary of mine.. A lot's happened though. They took me off the steroids and I looked as though I'd be ok.. This was just as I started school again. Took a while to readjust, but I got used to it.. About 2 months later though and my stomach aches start coming back in force. the fissures are continually getting better, I think.. Or at least they seem to hurt less most of the time. Consultants at the hospital put me back on steroids at 30mg/day again when I tell them my symptoms.. So here I am again.. currently on 25mg/day.. Should be going down to 0mg in 3 months. (I'm off it again now, yay!) Symptoms are pretty much the same as last time I was on such a high dosage.. The blood through the hands problem's now very noticable, and distracting. I do have quite a lot of energy most of the time, but it comes and goes, and as of yet I'm not sure about it's effect on this current bout of stomach aches.. I mean, they appear to be coming back again still, even though I've been on steroids for a few weeks (it did help at first though). Not too bad all round.. Things aren't great in terms of health, but I can hardly whine - it' been so much worse, and at least a LOT happier now than I have been in the past, which is all that matters really. :) Oh, and I'm on Iron tablets now too (I was a bit anaemic) which isn't much fun, but there you go! I'm sorry to say this'll probably be the last entry into the diary.. I hope it was some use to someone, or at least educational to those of you who haven't heard of the disease before. Take care everyone, and if anyone reading this (especially other crohns sufferers) wants to ask anything, feel free. Oh, if you want a reason, there are two really.. I don't have as much time as I used to anymore, and to be honest, the diary was getting very samey - there's a limit to how many times I can explain the same things in a interesting way, either for me or the readers. The rest of the pages will be updated, and if anything unusual or noteworthy happens I'll write it in here. Thanks for reading anyway. :)

  • Jul '99: Another entry. Since then I've had a lot of getting worse and getting better.. Now I'm well by my standards, but I'm on my way up after a particularly nasty recent chapter. I'm on Azathioprine, Pentasa, Prednisolone, Minocin MR, calcium and painkillers. I still get tired lots, I still get lots of stomach aches, I still have toilet related problems (my fissures have been bad recently, but now seem to be ok again). Basically, things carry on. At least I'm happier than I was in past years, which makes it a lot easier to cope.

  • Dec 2000: Long time since an update. Dont know where to start.. Finished 6th form (badly) and have split up with Jo.. Gradually took myself off the meds, making the final decsision to avoid them as much as possible while Jo was in hospital (traffic accident).. This has been a stressful year, and my Crohns is reflecting that. I stopped taking the medicine because after a lot of taking meds, and observing, I've worked out what makes me well, and what doesnt.. Steroids etc have too many negative side-effects for me.. I do NOT recommend anyone else goes against the will of their consultants and GPs, I'm just avoiding hospitals like the plague now. I know what made me well.. And I've never got as bad as I was before it happened.. Lawnswood 6th form, Friends, and Jo.. Unfortunately I dont see another big life altering experience coming up at any point soon. I was at college for a few months but quit because I lost my income support and thus owed the college vast sums of money. Which I dont have. So now I'm looking for a job, a future, the right girl, happiness, and friends who arent just going to disappear.. Happy xmas people. Sorry if I seem negative in this entry. I'm ok.

  • June 2001: Well, this is it.. Signing off.. Definitly the last entry.. I hope the diary's been educational at least. If you're wondering how I am now.. No fissures at the moment.. usually have reasonable amount of energy.. A lot of stomach pain, and I'm probably not eating enough.. After jo's accident, and a load of other stuff I didnt want to go back to the LGI, so didnt.. I got onto the St James' waiting list and had quick tests there, but now I'm going back to the LGI because they have my file, etc.. Not looking forward to it.. Another colonoscopy.. I'm going to have to be a lot more assertive with them now..

    If you'd like to know what's going on in my life, Crohns or otherwise, check out my Journal and feel free to leave feedback.. Love, and peace, and nice things like that to you all..