Crohn's - warts and all

2009-07-28T14:21:00.002+01:00

I had my infliximab on friday, the infusion itself went fine. I didnt get the usual kick off it though. Had some pain that night, so didnt sleep much. Had to dig out my trusty hot water bottle! I was still having loose stools the next day and was so bitterly disappointed. Spent a fair bit of the day in tears. I so need this to work. If not, i dont know what else we can try before i have to have surgery. It has picked up alittle now, i'm passing formed stool but i'm still going several times in the morning.

Oh well, i'm not in pain and for that i should be grateful! In other news, we just changed internet suppliers. We got a new modem, which it took me an hour to set up. It was a pig to do, then i couldn't get a wireless connection to work properly! Had to get the supplier to ring me and sort it out. It got sorted but it took awhile. I'm really thrilled with the service. Plus its cheaper!!

2009-07-22T18:38:00.002+01:00

So i'm due my infliximab (elixir of the gods!!) on friday. Boy can i tell its due!! It seemed to vanish overnight at about week 6. Since then i've got straight back to square one, now i'm starting to feel sick after eating. Might have to suggest i go back on the pred to try to knock out the active disease. Deep joy, i'm a size ten for the first time since i was about 12 and i like it!! Going back on the pred now i'll end up rolling to places cos i'll be so FAT!

Still if it gets rid of the symptoms, maybe its worth it!

I'm watching Sky News ans they are going on and on about Sven whats-his-name going to Nottingham. Think they are trying to insinuate that he came for football and sex? Why? No offense to nottingham ladies, but honestly, who would go there? Gross, i'd rather chew off my own arm. Bluergh!

Anyway!! Sorry to get distracted! Lets talk about my symptoms, currently im going between 3 and 8 times a day, all liquid with urgency. No pain, but i do have the feeling like i haven't completely emptied my bowels. I'm hoping to get back to once a day, solid, in other words NORMAL poo on friday. No mucus or blood, no vomiting but i am starting to get nauseous after food. I'm eating like a pig, my appetite has gone thru the roof.

I have to say it is lovely to not have to swallow lots of tablets every day. This is the first time i've not had to take anything since i was diagnosed. It reminds me of being 'normal'.

Iwent to see Harry Potter last night, i managed to sit thru the whole movie without going to the bathroom, however i didnt eat any popcorn. I really enjoyed it. The last time i went to the movies was a few weeks back when me and mum went to see My sisters keeper. Was in floods of tears most of the way thru the movie. Came out and mum started talking about the time of my diagnosis. Raked up a pile of old memories and i ended up in floods of tears in the car as well! Its funny how sometimes you just cant stop yourself crying. Mum admitted she worried about how i would conceive and carry a successful pregnancy with crohn's. She cant imagine me having children and to be honest neither can i. Its not just the fact i have crohn's. Its more about how can i ever find someone who will love all of me? The bloated me, the pred me and skinny and weak me?
I've had a couple of forays into relationships since my diagnosis, but nothing that has actually withstood any kind of pressure. One guy dumped me the day after a colonoscopy! He couldnt cope with me going through the prep, he panicked and ran. Admittedly he was only 19 but still. He was a farmer surely he had a strong constitution? Maybe this is just too hardcore for a person to actually meet and maybe marry some-one 'normal'. I know people have done it, and lots of others where already married when the disease struck so no escape there!! ;-)

Every bloke i seem to meet seems weak and unable to cope with crohn's. They just seem to find out about it, and suddenly you cant see them for dust. its a real shame, i'd love some company even companionship.

Hilarious colonoscopy story!!

2009-07-19T15:01:00.002+01:00

Absolute genius, i actually laughed so hard i cried!!!

Dave Barry - Colonoscopy Journal

I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis. Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner. I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote, ``HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BUTT!''

left Andy's office with some written instructions, and a prescription for a product called ''MoviPrep,'' which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America's enemies.

I spent the next several days productively sitting around being nervous. Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor. Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons.) Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes -- and here I am being kind -- like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, ''a loose watery bowel movement may result.'' This is kind of like saying that after you jump off your roof, you may experience contact with the ground.

MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but: Have you ever seen a space shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.

After an action-packed evening, I finally got to sleep. The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, ''What if I spurt on Andy?'' How do you apologize to a friend for something like that? Flowers would not be enough.

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the hell the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

Then a nurse named Eddie put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Eddie was very good, and I was already lying down. Eddie also told me that some people put vodka in their MoviPrep. At first I was ticked off that I hadn't thought of this, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house.

When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere. I was seriously nervous at this point. Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand. There was music playing in the room, and I realized that the song was Dancing Queen by Abba. I remarked to Andy that, of all the songs that could be playing during this particular procedure, Dancing Queen has to be the least appropriate.

''You want me to turn it up?'' said Andy, from somewhere behind me.

''Ha ha,'' I said.

And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like.

I have no idea. Really. I slept through it. One moment, Abba was shrieking ``Dancing Queen! Feel the beat from the tambourine . . .''

. . . and the next moment, I was back in the other room, waking up in a very mellow mood. Andy was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Andy told me that it was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.

New Things Part 3

2009-07-16T21:33:00.003+01:00

So i was sat in a tiny hospital room, with tears pouring down my face. I really did not want to be admitted, again. I did relent, purely because Dr T explained to me what the likely outcome would be if i didnt allow myself to be readmitted. He gained my trust almost immediately. I explained about the naso-gastric tube incident at the previous hospital, and he simply looked at me, sighed and stated in a very calm way 'We dont force tubes on people here, It just isnt how it is done' Talk about music to my ears!!

He ran through his treatment ideas for me. He wanted to do a small bowel follow through, plus a chest x-ray with hundreds of blood tests! I think because i trusted Dr T i managed to undergo each test he had planned with no hysterics.

Then sunday afternoon arrived. Mum had taken me out of my hospital room to see something different other than the same 4 walls! When we got back, there was a note on my bed. It read 'Jane Wood rang for you, please call her back on xxxxxxxxxxx'. Mum went out and returned the call, whilst i hopped back into bed. Mum was gone awhile, and when she came back, she had red rimmed eyes. My father had passed away. I remember trying to tell her it couldnt possibly have happened, all the while tears streamed. All feeling went, and i was just numb. I knew he was dying, but somehow even though you know, you're never prepared.

I begged and screamed to go home. I couldnt cope with being alone. The nurses called Dr T and explained, again he came through for me. Despite me having an IV in and being on steroids ect he allowed me to leave. Just for one night, and upon pain of death i had to be back on the ward for 8am.

The nurses through out that stay were fabulous. They were so kind, i remember one lady came in to change my bed sheets. She hasnt known about my dad, and she commented that i looked very sad. when i explained, she hugged me, and told me how incredibly sorry she was.

Tuesday came and Dr T came to visit me on rounds. He sat on my bed next to me, and he spoke to me. He said 'you're healthy enough to be discharged today, but i know you have alot to face over the next few days. If you wish to stay here for a few more days, i'll keep you here. Its no problem.' The compassion on his face nearly undid me. As touching as his offer was, i had to refuse. I needed to go home.

The weeks and months after that hospital stay all blurred into each other. It took me almost two years to fully get over those weeks. Even now, as i am writing this blog, years later, i have tears running down my face. Maybe in a way i will never fully heal, but i will never forget the angels i met when i really needed them. The nurses and Dr T.

New Things Part 2

2009-07-15T10:24:00.003+01:00

So i was in the A&E in a small waiting room, an IV in one hand at about 2am. I was trying to get some sleep with my handbag under my head. I remember hearing some people come into the room to wait and they commented on how terrible it was that i didnt even have a bed.
I nearly left several times through out that night. Thankfully the nurses practically rugby tackled me to stop me leaving. I think they knew how serious it was before i had fully realised.
7am hits, and i was taken to a cubicle and i saw a doctor. The doctor told me i had a bed and they thought i had a malabsorption disorder, i was severely anaemic and was 'very poorly'. I was taken up to a ward and settled in. I think i slept most of that day!
Mum, bless her, was worried stiff. My phone battery had thoughtfully died on me so she had to keep ringing the hospital trying to get hold of me. She was in the UK, but dropped everything and got a ferry over to take care of me. I was admitted on a friday and mum was in ireland by monday morning.

I have to say i was so happy to see her. I dont think i've ever been more relieved! I was being stuffed full of pills, and i knew i had several tests coming up but had no real idea about what they involved. A couple of days later, the 5th i think, i underwent a upper GI exam and a colonoscopy. The upper Gi exam was fine, i remember i vomited several times as they were removing the endoscope.

Unfortunately, the colonoscopy didnt go so well. I think my sedatives had begun to wear off. I remember all of it. The pain of it was excruciating. I was screaming at the top of my lungs and begging them to stop. I had a oxygen mask on, when i finally came out, i had twisted it out of all recognisable shape. My mum, who was waiting for me, could hear me scream. She said when i came out, i was white and in total shock. I dont tell people this to frighten them off a colonoscopy, but to make you all aware that not every doctor truly cares!

The colonoscopy confirmed i had crohn's disease. I was left with no information and no idea about what it was lurking in my intestines. The doctor wanted me to undergo a small bowel follow thru. This involves drinking lots of barium, which is pulverised rock suspended in liquid. Yummy!! I couldnt manage to drink enough for the test. My doctor wasnt pleased. She ordered that i have a naso-gastric tube placed so the nurse could just inject the barium into my stomach. Thing was, i was already terrified out of my wits. The ward sister actually apologised to me as she came to my bed to place the tube. She could see the fear in my eyes. As she came closer and closer to my face, i got increasingly hysterical. I had finally reached my breaking point. I refused to have it done. I refused to have the small bowel follow thru done either. Probably not the best idea i'd ever had, but i truly just needed the break.

By this point i had been admitted for almost 3 weeks. Me and mum had run out of money, and we HAD to leave. We were returning to the UK. We had a secret weapon though. My aunt was a retired nurse, and she used to run Gastroenterology clinics at York Hospital. She gave us names and numbers of consultants who i should be placed under. An added bonus was my doctor in Ireland knew one of the consultants personally. She did the best thing she could have done for me. She personally rang my current consultant, and told him he had to take me on.

Bless him, he didnt really know what he was getting but he accepted me and he created an appointment for me in his next clinic. Me and mum left Ireland on Monday the 17th of january 2006. We got back home to the UK on Tuesday the 18th. I am the current holder of the dubious honor of having thrown up in every service station between the ferry port in wales and my home just off the M62. The journey was horrendous. I was in agony. Mum was driving as fast as she could trying to get me home. I couldn't walk by the time i got back to my house. I continued to get worse. I was wheeled into York hospital the next day (wednesday the 19th) for my first appointment with Dr Turville.

He was so kind. He put me at ease almost immediately. Such a gentleman. He did a full physical exam, and explained everything he wanted to do. The only bad point of the appointment was that he wished to readmit me.

New Things Part 1

2009-07-14T15:36:00.000+01:00

So I'm female, and 23 years of age. I was diagnosed with crohn's nearly 4 years ago. I'm currently taking Infliximab (Remicaide) and B12 jabs. I weigh approx 9st 2lbs and i'm 5ft 7". I have no pain but my infliximab is only really lasting 6 out of every 8 weeks. So i have 6 wonderful symptom free weeks, then bang, overnight the drug wears off and i'm back to square one! Typical!

I eat pretty much what i want to, apart from veggies, fruit, orange juice and spicy food. Even a korma is too spicy on occasions!!
I have not had surgery yet, but i know it is inevitable. I don't shy away from that fact. I would much rather face in to it on my own terms, than it grab me from behind while i wasn't looking and me being totally unprepared!

I'm studying at uni, i've nearly finished my second year with one subject to repeat next month. Which i'm pretty darn proud of cos i missed 2 months of my second semester!!

I'm pretty freaked out about the Swine flu pandemic that's flying round Britain at the moment. What should i do for the best? Would it be better, since my uni has now got confirmed cases of swine flu, to not go back? Or should i be brave and go back just be uber careful? I think a phone call to my IBD nurse is in order, maybe she can help me to unravel the best solution. Seems such a shame to not go back just cos of a influenza pandemic but this could go very nastily for me and i dont want to tempt fate!

My diagnosis was a strange part of my life. I knew i was sick, but i also knew i couldn't really cope with the prospect of being sick. I began with symptoms at some point over the summer of 2005, i think. Its hard to remember when the exact symptoms began. Odd isn't it? the whole not remembering part. Then again i had so much else going on. I was at Uni in republic of Ireland and my father, who lived in the UK, had been diagnosed with colon cancer the previous year. I had a full time job, and was struggling to cope.
September comes along, and i'm back to uni. I'm still working full time and i'm eating less and less. The pain is getting worse and worse. The diarrhea was becoming more and more difficult to deal with. Life was getting tougher and it was to get a whole pile worse.

October rolls past in a blur of pain, less food, more explosive diarrhea, working and uni. By this point i was loosing weight faster than i could believe.
November is much the same, baring a visit to a GP. I explained about my symptoms, hoping he would point me in the right direction, and yet somehow knowing this was more serious than anyone suspected. He didn't even do a physical exam, and told me to eat more fibre, and i probably had the stomach flu. Yes, cos stomach flu routinely lasts for months on end!!

December was a turning point, i weighed about 8 st at that point, and i went to the UK for Christmas. My family were horrified at my weight and rapidly worsening symptoms. I was taken to a 'walk in' NHS centre, and the doctor there told me point blank that if i was a resident in the UK he would admit me on the spot. He told me i was seriously underweight (duh) and i had to do something about it (ie go to the hospital!!) otherwise i would end up collapsing and being brought in by ambulance.
A week later, back in the republic of Ireland, i was at my first day of work after Christmas. It got to about 8pm (i had to work till 10pm) and i just knew i couldn't continue. I finally gave in. I told the manager i was leaving and i got into a taxi and went to the hospital. It was the 30Th of December 2005.

I can still remember that night in A&E. They were so busy. They didn't have enough beds, nowhere near enough. I had a blood test and chest x-ray initially. The results came back and i was taken aside and an IV was placed in my right arm. Apparently, i found out later, my Haemoglobin level was barely above the borderline for a transfusion. Most of the A&E staff couldn't believe i had gotten to the hospital under my own steam. Most assumed i had been brought in by ambulance. My weight on that day was 45kgs. 7st 5lbs. My kidneys were struggling to cope and i was severely dehydrated.