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Ah not really sure what to say to be honest, I guess I should start with the basics of myself. I'm Natalie, 17 and I live in the North West UK in a place called Chester. I work as a sales assistant for a china company called Villeroy and Boch (thankfully they're sympathetic about my sick days!) and am also currently studying although failing.

I was told by doctors on 9/12/08 and 11/12/08 after various tests they are 99% sure I have Crohn's. I've had symptoms such as severe abdominal pain for a couple of years now but it all really kicked off in June of this year. To begin with I was told I probably had IBS, now I think I'd have been very lucky to get away with just IBS.

Since July my symptoms have been crippling. Been hospitalized. The pain is tenfold what it used to be and I cannot despite best efforts, control it. Lower right side, cramps all the way across, extends up to my chest. I'm having BMs multiple times a day and they're not normal ever, most times accompanied by large amounts of mucus and blood. Sorry for the rather graphic description there! I also tend to wake up every morning from 4/5am with an awful headache to vomit bile. I cannot eat anymore so there is nothing to bring up. I've become rather anaemic and being a vegetarian for 7 years hasn't helped. Weight loss has been massive, about 4 stone in total since everything began, 2 inches off my waist and thighs alone this week and I wasn't very big to begin with to be fair. I've been suggested to go on the elemental diet. Tired all the time, I can't even function anymore, just sort of lie there...

I'm on Omeprazole for upper stomach ulcers, Buccastem for the vomiting, Tramadol and Dihydrocodeine as pain killers and Prednisolone. Ran out of my iron tablets eek. I'm also deficient of many other vits. Got more bloods drawn yesterday for checks.

Sounds like how anyone else started off? I'd be nice to share experience here and gain advice and support. I'm not quite sure how to process the fact I now have a lifelong disease.

hey natalie, welcome to the forums

most people seem to have a really hard stage at initial diagnosis, it can take a while to start getting back to a normal life, but you can get there.

as pen mentioned, keep going back to the docs as much as you feel you need to get you feeling a bit better.

and dont run out of prednisilone tablets, its very naughty to stop taking those suddenly (you'll hear the word TAPER used around here often)

oh, and if you fall in love with us here, can we get family discounts @ Villeroy and Boch??? pweeeeese!!!!!!!!!1 thats beautiful chinaware!

welcome,
Jed

Hi Natalie - you're not too far from me, I'm South Manchester so around half an hour away

Sorry to hear you're having a hard time. I'd agree with Pen about liquids - try and get something down, very smooth soups/smoothies/build up drinks - whatever you can tolerate basically. You will feel exhausted while you're not taking in any calories, and it becomes this horrid vicious cycle - you get too tired to want to eat even.

Keep going back to the doctor - it can take a while to get all the meds just right, but you need to keep pushing pet.

As for processing the fact that you've got a life-long disease - that's a tough one. I'd say don't try and get your head round that just yet. Deal with each day as it comes for now, there's time enough when you're feeling a bit better to think ahead.

I'm fairly new here, but the wealth of knowledge and understanding on here is amazing - and in direct contrast to some of the other Chrohns forums I've run across, the general feel here is very positive which helps loads.

Keep your chin up, chicken xx

Thankyou all for the kind welcomes! Seems I have fallen on my feet joining up here!

Yes it's been a few weeks now of me spending an awful lot of time sleeping, it'd be nice to feel normal yes and do some of the things I used to. I'm sure that'll happen all in good time though. I have Complan that I was on back in April somewhere, so I'll be digging that out I suppose. It's so unappetising, mind you that's the nature of the disease it seems.

Got another doctors appointment Wednesday just so they can see how it's progressing. I do have enough pred. until then thankfully. Started on 40mg and I think I've read that gets taken down 5mg a week from there? They like to see me on a regular basis so atleast in that sense someone is monitoring and trying to keep a control of the situation.

Ah the Villeroy and Boch discount, they're quite generous, 50% off throught the year, 68% at Christmas. My Mum takes full advantage. :lol:

Hey Natalie,

Welcome! I use elemental (its designed specifically for Crohns folk in mind) when I need to supplement and also did around 6-7mths on it from Xmas 06 when diagnosed so totally understand where you are coming from.

If I can help in any way just yell ok? Will happily yell back ;-)

Hang in there things will improve honey ((hugs))

When I had lost all my weight my doc put me on Ensure 3 times a day. It totally helped my energy level and made me feel a bit better. Losing that much weight so fast really stresses your body out and the anemia will make you feel exhausted too. Try your best to get something down 3 times a day at least, it can only help your body.

Welcome to the forum. Hope you feel better soon. It took me months, but I am finally getting a hold on the disease it seems for now. At my sickest I literally felt like it would never end. I looked like walking death. You'll get through it, just hang in there!

hey natalie
welcome to the forum. nice to meet yet another person close in age to myself, im 18
sorry to hear about your rough time. i only have pretty much the same advice as the others- drink up those nutrition drinks calories are really important. and really let your doc know how bad youre doing.
hope things start looking up for you

Many thanks soupdragon, teeny and kello for the kind words.

I do agree it's important for me to get calories back up - those around me just say I'm not the same as of late. I'm trying to all small amounts as much as I can, I find I just get very full quickly say after a tablespoon of mashed potato. I look increasingly frail and washed out. My own mother doesn't like to hug me anymore because she exclaims she can feel all my ribs from the back. I know the feeling of thinking it won't end though, ever increasingly. Trying to stay upbeat all the same!

I think my doctors realise it's bad, they kept telling me hurry with all the tests and that it all the symptoms were increasingly in levels of seriousness after we'd established not IBS. In their own words 'you've been through it'! :ylol2:

Hello Natalie, welcome to the forums not much for me to say its been covered by everyone else but don't worry about going into the graphic details of your poo its not taboo around here! :lol:

Hi Natalie
Welcome to the forum.
I used to live near Chester... lovely place, apart from the hordes of tourists, heh! heh!
I nearly wasted away when I was a teenager with crohns... I'm sure you'll get through it and start to feel better soon.

Yes people do seem to like to take pictures of EVERYTHING when they visit here! It's quite comical sometimes.

Anyways got the results of another blood test back today - all came back relatively normal. Iron levels were on the low side, almost too low but nothing of too much concern. So obviously my body is coping with the blood loss from my bowels at present. That all could change however, as unpredictable as the situation is. They still think I have Crohn's however but still not 100% sure. Still on the prednisolone, starting to taper off to try and see how I feel once I'm not taking it. Doctor thinks the problem will be all the symptoms set off again. Didn't say much apart from that, I asked if I should seek dietary advice, but apparently no, even though I clearly can't eat. Which was puzzling, the whole thing was rather rushed anyways.

Means I need to go and get a colonoscopy too to find the exact site of inflammation - an idea I'm not too fond of. But I just really want to know what's going on with me. I guess that's more of a definitive test anyways. I'm sure there are many here with experience of the procedure?

It can take a very long time to get a solid diagnoses of crohns disease unfortunately. The colonoscopy isn't the most pleasant thing but it should give your doctor a good idea of whats going on. Once you get past all these annoying tests then you can move onto getting things better

Thanks Catfud! I'm still quite clinical about the terms for everything, I'm sure I'll have no inhibitions about discussing everything soon.

I guess you are right when you say I'm in the very early stages of diagnosis. The problem has taken quite a long to come on this bad so I can imagine in the same way it will take a while to find out what is going to help.

From what I have read about colonoscopy the worst thing is the prep, is that true? I'm also really awfully needle phobic, with the whole sedation aspect so those anxious thoughts aren't helping. I've recently discovered EMLA cream however. No pain = not so much utter panic!

Hi Natalie!

I love Chester! I live down the road as well, and have spent a fair few nights out around there.

Don't worry too much about the colonoscopy. Once the drugs are in you, you'll be fine . I'm not too good with needles either, but you do start to get used to it after a while.

Good luck and let us know how it goes

The prep for the colonoscopy is the the worst part and even that's not too bad.
I'm sure they will find out whats going on soon enough so that you can get back to a normal life..
I wish you the best!!!!

Thankyou Creepy Lurker (you have no idea how evil I feel calling you that!) and Wolfie.

I feel a little easier about the colonoscopy. I hope to be able to go to a consultation with the gastroenterologist this week sometime. I'm spending all my savings on the initial appointment in the hope to speed things along. I think I probably owe it to my health to get this sorted.

In terms of the pain it's becoming increasingly worse. I was about to leave to go to A&E on Friday night. But I thought I'd end up waiting hours with an awful lot of drunks. Decided I was better off just trying to put up with it. I rang the emergency out of hours doctors and they couldn't prescribe me anything stronger than Tramadol and suggested I increase my dose.

ditto what the others said, the prep is the worst. but the exam is not too bad. and then you get to EAT!
prior to the test, maybe ask the anestesiologist (sp?) if they can give you the gas to knock you out and then insert the iv after youre asleep. ive asked for this before because my veins are so shot that it takes them 3 or more sticks every time!
however, most of my OR experiences have been in pediatric, so im not sure if things are different with adult docs?

well i hope things get sorted out for you soon! happy holidays!

Ha yeah I keep having food fantasies! It's bizarre! I lost 16lbs from this last bad episode though.

I will discuss the option of gas, then IV with them when I go for my appointment. Which is going to be January 8th, so not long to wait at all really. That was a really useful suggestion as it would definitely cut out a lot of the associated stress and worry for me, knowing I wouldn't even know the IV was going in etc. I'd rather be completely out and not know about any of it. That'd be the ideal scenario!

Have managed to change painkillers and I'm now on fentanyl patches and diazepam as a muscle relaxant. Feeling the best I've felt in months and months right now. So I reckon I might actually enjoy Christmas this year. Hope everyone else does too!

Just thought I'd update this post, as opposed to starting a new one and filling up the place.

Well ended up in hospital, was inpatient from 2nd to the 12th of January. I arrived on a surgical admissions unit I believe and I tell you my pulse was 147 my blood pressure was 93 over something absolutely awful and I felt like I was on the way out. They very quickly came to realise I was very very dehydrated, queue about a million drips being pumped in. Lots of oral morphine too, the pain was horrible. Blood tests all came back off whack, I believe my liver function should have been around 20 for a normal female and mine was well over 200 and I don't drink/smoke etc. It was all really quite worrying.

I was put on the emergency list for a colonoscopy, to be carried out by general surgery (no gastros at the weekend) and went to theatre the next night. It was done under a GA because they decided I was too ill to tolerate just sedation. They didn't even give me a choice. I believe however about 45cm in the scope got stuck and because they couldn't move me/it they abandoned the procedure. It confirmed I don't have UC however. The prep was quite funny actually, I didn't go at all after the first picolax as I hadn't really eaten, 2nd didn't really do much either for the same reasons I believe. So it wasn't too bad there either.

The weekend passed and sometime the next week I was seen by about 3 or 4 gastros and I now have a very nice one indeed who will continue my long term care. He explains everything really well and has a very nice manner. Due to all my symptoms, malnourishment, tests etc he's pretty much saying it's Crohn's too. They're treating me as a Crohn's patient currently. They also sent me for a CT scan (evil evil contrast dye) and luckily at present I have no abcesses or strictures etc. Just cysts on my lower right side apparently. Which they plan to ultrasound in 3/4 weeks. I'm also seeing my gastro for a follow up on the 22nd of this month, then about 4 weeks after that I'm scheduled for a repeat colonoscopy, so they can get good biopsies and also an endoscopy. This time just under sedation, what can I say I'm scared. They want to perhaps start Pentasa after that. They're thinking the problem lies between where the large and small bowel join so they want to get the scope round there if they can.

Current medication 40mg prednisolone, back up again! Omeprazole for the acidness still, changes in my painkillers though because opiods aren't good to be on for so long, so I now have a 'pain management' team and am on pregabalin 75mg 3 times a day and Pro-Banthine 15mg or something like 5 times a day. Along with amitriptyline and diazepam at low doses, see if they help relax the stomach muscles and heck relax me. Still hurting bad though! Something for sickness too but I can't for the life of me spell it! Starting Elemental diet on Monday as advised by dietitician, which I've made another thread about, will let everyone know how it goes. I don't feel too awful about that to be honest.

They also got psych on me whilst I was in the hospital, for unrelated reasons but eh I hate it. Due to the fact I've not been so stable in the past in terms of weight and that sort of thing and Crohn's has made me lose an awful lot in a short period of time. They want me to go to counselling in February or sometime I think, which is okay I guess it can't hurt to go, but I don't feel ready or really able to talk to someone face to face at the moment. Since the Crohn's has come to light I'd rather focus on feeling better in myself with that, than dragging up a lot of past problems with it.

Right now I'm glad to be home, but part of me feels like I died and came back when I'd rather have not. I just ache all over and I'm so tired, I just can't focus on any one thing.

aw natalie it certainly sounds like you were in really bad shape. good to hear that you have a nice team in place to help you start feeling better now.
hopefully the tests go well enough and give some more good info.
and yes, that contrast dye is the most evil thing in the world. just had some last week myself, and from here on out i am requesting MRI's instead. makes you so sick its unbleievable.
keep us posted

hiya Natalie

it's weird that both you and Kello suffered bad effects from the contrast dye when having CT scans - i've had it a few times and didn't mind it all, apart from the hot flush feeling it gives you, and that strange feeling of acutely needing to wee lol

good luck with all the tests and results. don't worry too much about the endoscopy, the sedation is effective, and if you tell them when you get there you're anxious, they can give you a little extra (well, they did with me anyway).

i'm also on Amitryptiline right now, albeit a very low dose, and it's an awesome drug - has really helped me.

keep us posted how you get on.

oh whoops i was talking about the contrast dye that you have to drink. THATS the stuff that makes me ill. maybe i misunderstood which one we were talkin about?

lol the peeing feeling is funny from the iv contrast, hehe.

I don't think anyone really realised how bad it was becoming, not even me. I was trying to carry on as normal albeit struggling and when it came down to it my doctor admitting me was probably the best thing that happened. I didn't think I'd be in so long though, they even wanted to keep me as inpatient incase they got another theatre slot for the repeat colonoscopy and the endoscopy.

Oh I had both the dyes, drinking it was really nasty, it did make me feel sick. Mainly from the taste I think and the sheer volume of the stuff. I hated the IV dye too, the hot feeling just really wasn't nice. Atleast that was over quickly though!

Seeing my new gastro and my doctor this coming Thursday like I mentioned. Hopefully then I can discuss any concerns. Which there will be a lot of I'm sure, I tend to worry. The thing I worry most about with it is pain. I've lived in pain a long time now and I couldn't tolerate anymore.

As for the amitriptyline and the diazepam, they help me relax more than anything. I take them at night and so again they have the added effect of making it easier for me to fall asleep and not be kept awake or awoken by the pain. I've been on the diazepam a couple of weeks now, only started the amitriptyline when I came out of hospital.

Will let everyone know any updates when I have any, probably Thursday now! Thankyou for all the support and kind words also, it makes it a lot less lonely. Xxx

Hey, Your story is very similar to mine although sounds like you had a slighty harder time with it! I've also recently been diagnosed with crohns. over December I barely ate lost a lot of weight and had a colonoscopy on the 29th which they told me its looking like I have crohns. After that I ended up going even worse and was also admitted into hospital on the 2nd of jan for a week, was on a drip having god knows how many blood tests and various other things.they then got my biopsies back and confirmed crohns. I'm now on Predisalone ( think thats how its spelt!...) steroids and feeling much better. and see the specialist a week on Monday. Think my medication will be changed then. it has been difficult other the past few months...especially with friends not understanding how ill i've been and thinking its "all in my head..." but i think their opinion has changed after seeing me in a hospital bed! either way things seem to be looking up and im sure they will be for you soon to! btw im from wigan so not to far from you either!....

Feel free to message or email me if you wanna talk about it more!

Martin.

Hi I now live in manchester UK. I'm Mel had Crohn's now 14 years, im 40 now. I took an interesting approach to management which is less drugs, more positive attitude and carfull diet. I now only take drugs when i have a flare up or in hospital. I would be more than happy to chat chat with you with any thoughs advice etc. There is an excellent Crohn's specilist at Wythenshawe Hospital Manchester. Dr J Crampton. He is one of the best in the UK I beleive, he is my doctor. I've also just written a book you might care to read. It's about my life with Crohn's. I have had 50 operations so far 100 hospital stays, but I keep smiling and living. You can still have a life. My website is www.crohnsmystory.com, you can also email me direct there.
Mel

Yeah I think a lot of peoples attitudes towards what was happening to me changed when they heard it was crohn's as opposed to just 'stomach troubles'. I don't want sympathy or anything like that, just understanding. I guess many here can relate to the hospital stays, I fear it will only be the first of many. I just get that feeling.

Like I said I'm back up to 40mg pred. at the moment and in the past that's stopped the bleeding I experience. However today it's been quite bad and this does worry me. Luckily I do have my Thursday appointment, they did tell me when they repeat the colonoscopy/endoscopy that biopsies would likely take weeks to come back and only then would they consider changing medication. My gastro is worried about Pentasa and kidney failure, he said he's just had a patient it's happened too and now he's maybe a little more cautious. Will just have to see how it goes I think, one day at a time.

Thanks for the book link Mel, I will check it out when I have time. Sounds like you've been through an awful lot but it makes me hopeful when you say you're still smiling despite it all. I hope that's me in 14 years time too. Xxx

Hey Natalie,

I haven't been around a lot lately but when I read your thread I had to post. I am also in the same boat as you - I've had anorexia for years and have lost heaps of weight as a result of both that and Crohn's. The eating disorder is not as much of an issue as it used to be now that I know that a lot of it is to do with how the CD reacts to different foods and it's not all in my head, but it still has an affect.

I am struggling real hard to put on weight at the moment up from 29kg at the end of last year. I think I have gained a few pounds. I have PEG feeds which means getting fed thru' a tube in your stomach - it's like nasogastric feeding but more long term. The feeds are elemental - I use something called Vivonex Ten - it comes in powder form and smells disgusting so I am glad I don't have to drink it. You can get flavor sachets for it but I don't think that would make a difference.uke_r: I do 'taste' it when it comes back up with reflux and it is gross!

I did try TPN (Total Parenteral Nutrition) but it didn't work because my blood sugars were unstable and my liver wasn't coping with it. I was disappointed tho' because it was the only time I didn't feel like I was going to spew all the time.:frown:

Natalie, the psyche input is hard to take I know but it can help. Not just with what has happened in the past, but also what is happening now - not being believed, your diagnosis of crohn's, losing so much weight and having to deal with gaining it, being so sick etc. etc. Take advantage of the help thats on offer and use it how you need to use it. That's what I am trying to do.

If I can help at all, just let me know OK? Even tho' I haven't been posting much I do check in here and I'd like to help if I can. Good luck with it all. I'm thinking of you...

Thanks CookieCat! I guess you can relate to what is going on in my head aswell as physically, I mean the steroids alone and the talk of weight gain and other side effects makes me want to get off them quicker than ever! It's just a constant fear.

I ended up in the hospital again yesterday in severe pain, they gave me stat doses of morphine and rang my gastro to come and see me. But basically he never showed and opposed to stay the night, not sleep and feel awful I discharged myself and took me and my pain home. Have tried to put calls in today and see if there was anyone that could help me but it seems not really... Dietitician was saying if I stayed in overnight she would have come to visit me again to discuss that darn NG tube, no thankyou. I don't know how many times I can say no.

Atleast hopefully tomorrow will bring better times, going for an ultrasound regarding these cysts and then onto my gastros clinic. Will let him know how tough things have been since I left the hospital and see what we can sort out. I hope it'll be successful and not something that just puts a downer on things.

Just another small-ish update. Went for an ultrasound scan last Thursday regarding the cysts they found on my lower right side, good news is they have cleared on there own. So thankfully that's one less thing to think about!

Saw my gastro following that and we talked more about the repeat colonoscopy and endoscopy, I have requested heavy sedation - I don't think I'd cope otherwise. We were considering another general but I thought I should try without atleast. We will be going with 'kleanprep' is it this time, I think I've read that's nasty stuff but I suppose a days worth of pain for a possible lifetime of gain it's got to be worth it. Gastro is also requesting blood tests to see my TPMT levels so I can start on azathioprine/imuran. Getting that done tomorrow, let's just hope I have a lot of the enzyme, I need a break!

In terms of the Elemental diet it's been almost a week now, I feel like I have more energy and that I'm beginning to build strength again but it's just not very varied and that is probably what gets to me the most about it and the fact everything is cold. Oh well though again my dietitian tells me to look upon it as part of my medical treatment as opposed to a diet and in fairness that thought does help me get through, knowing this will hopefully help. It's definitely cut down the number of times I'm going to the bathroom per day (maybe also the steroids helping with that), but in terms of pain I'm still feeling really rough. I will always persevere though!

Hi Natalie - I don't think I welcomed you. Glad you are feeling a teeny bit better on the elemental. Mmmm, that kleenprep will make your elemental taste like a slice of heaven. Nasty-licious! Good luck with your next scope.

Thanks My Butt Hurts (<---- it certainly does!). Yeah the Elemental is definitely proving to be worthwhile, my pain has certainly decreased. Over the weekend I felt pretty awful but I think that was just a minor setback. The hardest thing about it really is the fact it's so limited in what you can have. I guess it has to be to work effectively though.

Got a preliminary date through for my repeat colonoscopy/endoscopy, they wanted a theatre slot rather than an endoscopy suite to do the procedure in, so it's a little longer than I expected to wait but March 12th it is apparently.

Hopefully get my TPMT results back soon too, it's been a couple of weeks now.

Hi

You could try chocolate ENsure [cold] mixed with Peps [cold]i.
I lived on this for about 2 months a few years ago.

Gatorade also helps but I got tired of the taste.

Jello for energy. I have an aversion to green jello myself.

MOST important you are not alone. There's a million of us that have this 'crappy' disease.

Harry

Hey Natalie!
Welcome! Just joined myself, I'm after just turning 20 and I'm from Ireland so I'm close to you in age and on the map.
I've had Crohn's for 14 years so I'm quite the expert - any advice you need I'll gladly give!!
And I've been on the elemental diet for four years now. I cannot STAND the taste of them, it actually makes me vomit, so to get around that I pass a nasogastric tube on myself every night and get the liquid in that way! It sounds extreme but I really need to take it as a supplement and there isn't a hope I'd be able to force myself to drink it.
It has benefited me HUGELY. It's the one thing I'd recommend as my gold star treatment for the disease. It's proven to be as effective as steroids in inducing remission but without the nasty side-effects like the big bloated head! :smile:
I was always tiny, under 5ft and under 6 stone, sometimes only 5. Until I started this. I grew three inches on it, to 5ft 2 and now I weigh over 7 and a half stone which is healthy for my height. I look loads better and feel loads better on it and I take out my tube in the mornings and eat normally throughout the day.
It's a scary prospect but passing the tube shouldn't hurt if done correctly and once you get used to it it's just like brushing your teeth. I could easily pass it with my eyes closed now!
I really recommend it!I know I sound like a tv advert :lol: but I am just so glad I gave this a go. It made a really big difference for me!
Let me know what you think!

I just realised there that that post was old! Oops oh well.
You could try Polycal Orange it tastes okay, and Scandishakes taste like milkshakes and both are high in calories. Glad to know the elemental is helping you!

HI Natalie,

Sorry you are joining us here, but welcome.

I was in the same spot you were when I was diagnosed but I had to be admitted to the hospital because I lost 3 stones as well. I was badly malnourished and dehydrated..so I would suggest lots of Fluids, soups if you can do it, I know how hard that is when you already can't eat....apple sauce was something I could do...switch to low fiber for anything you already are eating because you sound like you are definitely in a flare up and I would schedule an appt with your GI specialist.

Fluids as much as possible (soups, boost/ensure, soft foods - mashed potatoes whipped with sour cream or milk or something for energy, whatever you can swing but stay away from high fiber right now...boost has a high protein drink that you would likely benefit from...) - If you are deficient in all of your vitamins it may be a good idea to talk to a pharmacist about getting a multivitamin and then seeing what doses you would need for the individual vitamins you are taking, such as I take a multivitamin plus a vitamin d..I would take a calcium one as well if you don't do milk or dairy products...

Much love and best of luck. Go see your doctor! Drop me a line anytime.

Hey nat, hope it goes well and you feel better

Thanks everyone!

I did a month on Elemental, then my dietician suggested I start reintroducing some foods but it's been absolute hell. Anything I eat goes through so fast and the pain is just awful. My lower abdomen swells up so much. So I'm back to the Elemental full time now, no food. I don't really mind, atleast I know with that I'm not going to be having to pop Tramadol all day. I can drink herbal teas okay so that's helping with the fluids aspect, I add a lot of sugar aswell just for the extra energy. As for the vitamins, I do already take a multivitamin and was prescribed Calcichew D3.

Unfortunately I can't get an appointment with my gastro because they're so booked up. So they've just said they will see me on March 12th when I get readmitted to hospital for this repeat endoscopy/colonoscopy. Hopefully then we can start with the azathioprine/imuran apparently, because my TPMT value was within the okay range although at the very lower end. I want to get off the steroids but they seem to want to keep me on the darn things. At first no side effects but now my body just feels sore and I bruise very easily.

Went for the pre-op assessment yesterday for the endoscopy/colonoscopy. Arrived at 8.30am and was still there at 11am. Got asked so many questions that's probably why and then had to wait around at the hospital pharmacy for my lovely prep solution. It seems quite extreme that each of the 4 sachets has to go into a litre of water?!

Sugar sugar or sugar substitute?

MMM liquid prep. LOL...boy that was fun...at least it'll help clear you out...get anything in there out and give your insides a bit of relief.. ...mmm what brand is your lovely liquid prep anyways?

Just normal sugar, the Elemental liquid containers sugar and sweeteners and I know they say sugar isn't great for crohn's but it's in there.

To be honest Jamie there's not much left inside of me as of late because the Elemental means you have a lot less BMs, which has been an upside. There were some awful days where I thought the D would never end and it was so gross but mostly it means I go a lot less frequently. This liquid prep is the ever delightful Kleenprep, I've had Picolax in the past also, then there was the enemas... Not so much fun.

ugggggh enemas.....I can live without hearing the word ever again. They were giving me enemas to take home and do when I had perianal fistulas...never have I experienced that type of pain before and never shall i again. lol

Well the prep on Wednesday was absolutely disgusting, 'kleenprep with vanilla flavour' well they lied! It was like seawater, I tried to mask it out but it didn't really work.

Anyways jump to colonoscopy/endoscopy time, they decided again last minute to give me a general, not that I minded it's much easier that way. Diagnosis confirmed as Crohn's though with active ulceration in the ileum and what was inflammation throughout the large bowel that has now healed due to the prednisolone and the elemental diet. I was thinking I hadn't bled for a few weeks and my prednisolone is now down to 10mg and I never usually get below 20mg before it all flares badly again. So atleast that is a positive.

I'm now on Pentasa and Azathioprine, totally lost as to when to take them and when to get all these blood tests. Trying to get an appointment with my doctor sometime to discuss it all and then I have a follow up with my gastro in about 4 weeks. Hopefully can get back to some form of normality now and maybe get my food habits back on track as well.

When you find a prep that isn't disgusting, you gotta let us all know and I am sured we will be in line for it when our turn comes around lolz.

Ive heard alot about Pentasa on here, Im gonna have to ask the Dr on Monday about that as well. Glad to hear your search for normality might be comming to a close

mRae85 said:

When you find a prep that isn't disgusting, you gotta let us all know

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I have had 2 that aren't bad.
1. Miralax mixed with Gatorade, it doesn't change the flavor of the drink that it is mixed with.
2. Magnesium Citrate, it tastes like sour patch kids, and it is a very small amount to drink.
Golytely, halflytely, kleenprep, and fleet all taste like sweat.

Hope your new findings and meds help you out Natalie!
How many pills do you take? Maybe we can help you until you get ahold of your doc.
I take Pentasa 4 times a day, breakfast lunch dinner and bed. I take Imuran once with my breakfast dose of Pentasa.

w0000t, perfect timing! I'll be sure to ask for those by name now! Im due for another wonderful test soon, so now I know what to ask for

The Kleenprep might not have been so bad, had there not have been 4 litres of the stuff to drink. It made me feel really quite sick to have that volume of liquid in such a short space of time. It did say on the report afterwards that 'bowel prep was good' so I suppose the discomfort paid off.

At the moment I'm taking 1000mg of Pentasa 3 times a day (apparently they are the sustained release tablets, whatever that means) and 100mg azathioprine just the once each day. Taking the Pentasa morning, midday and evening and the azathioprine in the morning. I did end up speaking to my doctor yesterday and she said she will sort everything out for me at an appointment next Friday and take the first of the blood tests. Apparently the hospitals SHO has written to her detailing when they all need to be done so again that's good. I like good organisation!

yeah the kleenprep stuff is pretty gross i thought and the fact u have to drink so much is crazy

I have to admitt, I can't say that the needles are my best friend and we all know the prep is an absolute nightmarre and then some, but I'd have to say I actually look forward to the colonoscopy or should i say the results of it. Not only is it something that we all have to or at least should get done at least once a year, but it is nice to visually see what is going on inside. We all know that we are in pain or something is wrong for example but I for one like to visually see just what the changes are or just how bad it is. It might not be what I could call reasuring but I suffered for 8 years before getting diagnosed. For the most part outside of "maybe it is IBS" I would usually get an "its stress related" and get handed prozac or something else for deppression, seriously I could name off at least 7 or 8 "mind medication" pills I have been on just because no Dr wanted to take it seriously. So even though Im no big fan of needles So for those horriable prep hours (sure seems like years vs hours when you have to drink alot of that stuff and well to put this best I can... litterally cant leave or scared to leave the potty) and a good way to make it past the needle fear, just keep that thought in mind. Something about knowing there will be a rainbow at the end of the storm is enough to calm you enough so you can get it all done without scaring yourself even more than need be.

Sorry I am a very long winded person, but also I just noticed that I never actually posted anything reguarding your situation and I felt bad about it so I had to add my " 2 cents" here this time, I hope things get better for you soon. Im really looking forward to hearing your next update, you are still waiting on the final results as of now huh? I read everything word for word in this thread and so far saw no final diagnosis , so i am asuming you are still involved in the Dr's lovely sence of humor and thier waiting games. I also asume the "next" Friday you are talking of will be on the 20th also. Well, keep us posted, I'll be waiting to hear from you.

Don't worry I like long posts, I like to have something of substance to read! Yes I was glad to have the results (I got them straight when I came round) and have something firm on how/where the disease was progressing, all the inflammation in the large bowel has healed quite nicely, to the point where I'm not bleeding now, still moderately active ulceration in the small bowel. They did give the ulcers a name but I don't remember exactly! Luckily I had a general anaesthetic for my colonoscopy and so I was totally out of it and they put the venflon in my hand whilst I was out, so that wasn't a problem.

I can relate to you over the whole IBS thing, they first thought I had IBS last June but I didn't respond to the medication and then I started bleeding and it all went downhill from there. To the point where I was admitted to hospital in January of this year and spent almost 2 weeks there. I don't think I realised at first how sick I was but reading my notes was very scary. I did think people thought I was crazy before I was actually diagnosed with Crohn's (December 11th 2008). I mean I am under psych care but that's for unrelated issues mainly eating disorders - although I do feel those aspects of my life are made harder by the Crohn's.

Anyways had my first blood test, yes it was the 20th and the blood draw itself was fine, I used EMLA cream so my arm was quite numb and I didn't feel anything really. Now to wait for the results, got my next one this Thursday morning.

Maybe my situation seems confusing, I was diagnosed as Crohn's last December and put on prednisolone, I had a colonoscopy whilst in the hospital in January but it wasn't conclusive due to very poor prep and so they organised this repeat - with a different prep method! Then after all, based on their findings they put me on the longer term medications pentasa and azathioprine. Hence all the blood tests starting now!