New to this, introducing myself (long!)

Hi guys, i'm extremely new to this so I'm still learning, and I'm very confused and unsettled about the whole situation at the best of times so I apologise if things get a bit jumbled.

I'm 18, 19 in February, and ever since I can remember I would get sick really easily, often being taken home from friends houses in the middle of the night due to feeling terribly ill after eating anything. I always thought of it as a "Junk food intolerance" and thought no further of the situation.

When I was in high school, at age 14 I was really active, really happy, doing very well in school. All of a sudden I got sick one day, and was off school for two weeks with severe abdominal pain, vomiting, aching joints, fever and chills etc. I was losing on average 5kg every 2 days, by the time I was well enough to go back to school I had gone from 80kg to 55kg, I had no energy, had to be extremely careful what I ate, I couldn't do any physical activities. The doctors couldn't figure out what it was and passed it off as a virus, but now I'm not so sure.

The rest of high school passed in a similar fashion, at least once a month I would have 3-4 days off school because I was ill again. Some months were bad enough that I would have up to 3 days each week bedridden.
I went from a straight A student to failing everything, I eventually no longer cared whether I passed or failed, Once I got my drivers license and a car I would often drive home part way through the day saying I had no more classes left to do.
In my senior year of high school I was diagnosed with depression, and anxiety with agoraphobia. I also have scoliosis which always caused a lot of pain whenever I wasn't active enough, which was quite often due to being sick all the time.

I graduated high school at the end of 2012 and enrolled in a course to become a vet nurse. I loved this course, I started it in February 2013 right before I turned 18 and life was going great, I was able to manage my depression, my anxiety was under control mostly, I wasn't getting sick as often, and my back wasn't giving my so much trouble.
Then came the subtle changes, I stopped eating breakfast before course each morning because it made me bloated, nauseous, very sluggish and tired, and just plain blah. At the time I figured it was because I was getting up earlier in the morning, no big deal right? I was eating healthy other than not eating breakfast.
Then I got put onto an oral contraceptive pill as a last ditch resort to control my horrible periods, and I piled on the weight, going from 60kg to 83kg. It bothered me, but I didn't worry too much because I was very fit, I ride horses, I was riding my own two thoroughbreds every day, both young and hard to ride. I was eating healthy, had a lot of muscle tone, a lot of energy, no worries.

Then I got sick, again. This was around June that I started getting sick again. I found that every bite of food that passed my mouth made me feel extremely nauseous, my too-big-jeans would go from loose and falling off my hips to button-popping-tight within half an hour of consuming any food. The cramps and pulling pain was terrible and I just generally felt yuck. This carried on for a week before we started going to the doctors. I was at my doctors office around 3-4 times a week and they took many sets of blood tests and urine samples. The only result that come back was that I had low iron, normal for me, I've been low in iron for every blood test I've ever had in my life, even with supplements.
They couldn't figure out what it was, and at this point, even water wouldn't agree with me, I couldn't drink it, and every shower I took was leaving my face and arms red and itchy, no matter the temperature or products used.
They went through possibilities of eating disorders, psychosis, attention seeking, stress, anxiety, everything. Eventually my doctor said hold on, maybe you have gallstones, and he prodded my gall bladder. I almost screamed. I never even realised my gall bladder was so tender. He then ordered a CT scan and sent me home. That night I couldn't sit up, lie down, talk, eat, walk or anything, it was even a struggle to breath, so dad took me into the hospital. This was the 15th August by the time this happened.
After being pulled into ED, they admitted me to the surgical ward for 3 days. I was told that I was to be kept nil by mouth (haha funny, like I could have been anything else at this point).
They did two ultrasounds, and pregnancy tests, did I mention they had already done over 10 pregnancy tests in the months leading up to this? Well I wasn't pregnant and I'm still not.
They kept giving me gaviscon, buscopan, tramadol, ibuprofen and a whole bunch of others that I can't remember. None of them did anything. I was still in excruciating pain, to the point where they actually had to knock me out to stop it. I was on a drip the whole time I was there.
I was taken in for an emergency gastroscopy on a Saturday morning to check for stomach ulcers. The experience was terrible, they inadequately sedated me for starters (public healthcare here is terrible for many reasons, this was not a one off).
They took many biopsies, all of which come back clear, as did the blood tests for coeliac among many other things.
After the 3rd day they wrote me off as having mental issues and nothing physically wrong with me. They gave me a heap of pills and sent me home, basically it was an "I don't know whats wrong, therefore your imagining it" (again, not a one off at this hospital)
Less than a week later I was admitted into ED again for the same symptoms, only they had worsened over the week.
This time I got the head of medical to see me. This was when the suggestion of Crohns was voiced, by the head doctor who has crohns disease himself. He ordered a capsule endoscopy, put me on Pentasa, Mebeverine, Ondansetron, and buscopan. He then sent me home to wait for the outpatient appointment.
A few weeks later a letter arrived in the mail saying that it may be up to 6 months before they could find me an appointment, let me tell you, my dad lost it, he utterly lost it. I wasn't eating, I wasn't even drinking at this point, I spent every hour of my day and night on the couch when I wasn't in the bathroom. I physically couldn't walk 10 meters out my front door to pat my horses. I had also lost 13kg in that week. Dad rung the hospital and abused them, they had put me down for routine investigation, and don't we all know that if somebody can not physically eat or drink and is losing weight that rapidly then it's probably not routine as much as it is urgent?
At this point he got sick of it and called upon our health insurance, thank goodness we have it.
I went to see a private surgeon and he once again brought up the possibility of Crohns, he was disgusted with the public hospital, and also couldn't believe they had put me on pentasa before getting a diagnosis. He had me in a private hospital the very next day for a colonoscopy. That was scary, I warned them about my agoraphobia because I could feel my control slipping away as I walked through the doors. Between the times of being wheeled out of my room and into the surgery I was physically paralyzed by the concentration I had to put into my breathing, I couldn't see, hear or say anything, I couldn't physically move and then all of a sudden it snapped and I was off that table and gone, they had to sedate me before they could do anything, so i'm glad they had the sedation ready beforehand.
A week later the biopsies come back, they were clear. I was relieved but devastated in the same way. Here I was back at square one again, with no diagnosis, still not eating, the only water I consumed was to take my 46 pills every day. This surgeon is almost certain that I have Crohns disease, and he said that my colonoscopy did not look normal at all, but it didn't scream Crohns to him yet. He is now waiting for my calprotectin levels to come back and we will go from there.

I had to quit my course. The course that I loved, I preferred to be there rather than being at home and I had that taken away from me because of all of this. I went on holiday between October 5-12, I flew for the first time with my boyfriend, many hours away from home. I was so so sick while I was down there, we spent hundreds on after hours doctors, I got given valium and kemadrin while I was down there to counteract a reaction from a new drug I had been given for nausea. I spent almost my entire week down there vomiting in the floor of the shower because there was nothing else I could physically do. The first night I was there I slept in the bathroom hunched head first over the toilet. Who does that?
While I was down there I didn't have a bowel movement for 5 days, and the pain was so bad. I felt like every move I made was tearing my intestines apart, the pain would even radiate down my legs and nothing I could do would fix it. I was at the point where I was dry reaching, I had nothing left to vomit but yet my body was still pushing for more, i didn't know what to do, I ended up ringing my surgeons cellphone because I was so scared and in so much pain, I didn't know what to do and I was meant to fly home like that, and I did fly home like that, because there was nothing else I could do.
I felt worse for my boyfriend though, there was nothing he could do and I watched it break his heart, every single day we were there. We had our 4 year anniversary down there, we were meant to go out for dinner. We didn't of course.

I have my next surgeons appointment on October 22nd, and I'll admit i'm terrified. I'm terrified of having no diagnosis, but I'm also terrified of getting a diagnosis. Since i got back from my holiday I have spent all my time between the couch and the bathroom, I haven't slept in my own bed for months now. I haven't ridden my horses for months, I can't even feed them on my own, my mum has to do it for me because I physically can't.
I also feel a little bit stupid, I've only been battling this constantly for about 4 months now, so many of you would have been battling this for a whole lot longer and I don't want to sound like a whinging teenager, but I'm scared, I really am. And I hate seeing my family so stressed out, I hate seeing my boyfriend hurting so bad because he can't do anything to help. I've lost all of my friends but one since this started, and that one friend is amazing, i don't know what I would do without her, but I guess it goes to show how good my "friends" really were.

Anyway, that's me. That's about the longest thing I've ever written apart from course essays, and I still feel like I've missed a lot. But I feel bad (and extremely grateful) for anybody who reads this, because nobody around me knows what it's like and i'm sure many of you do. I'm currently sitting here unable to sleep due to nausea, bloating, and cramps with the pain radiating down the backs of my legs. I also have really sore knees which is unusual for me, and I haven't done anything that should have made them like that.
I want to be back to how I was, healthy and fit, riding my horses, able to walk wherever whenever, able to at least eat something, able to get through half a day without doubling over in pain, but it doesn't look like that will be happening any time soon.

Hi holly , I cannot believe what you have been through it is heart breaking . My 12 year old son was diagnosed in may with crohns after I insisted he have a ultrasound as we have kidney problems in our family. It has been a long journey but the best thing we have done ( and has put him in remission ) is a liquid diet . He drinks ensure 7 times a day he is allowed boiled Lollies and chewing gum . It has stopped his pain this is the first time since diagnosed . Maybe you should try drinking these drinks as they have everything you need at least until you get some answers they also say fortisip is a good drink but my son never liked them he flavours his vanilla ensure with Cadbury drinking chocolate or strained strawberry topping ( get rid of all seeds) these have both been checked over by our dietician . At least if your having these you are resting your system and getting your body the nutrients yOu need until they can sort it all out . I wish you the best of luck and hope this helps it is all very confusing and scary but they will get things sorted but unfortunately it does take time. Chin up and try and drink up Wendy

Hi! I too spent 4 painful months in bed and in and out of the hospital without getting any answers. This can be so frustrating when you're constantly in pain. Luckily I'm now at a point where I can go to work and get on with my life. Getting to do daily routines and keep your mind busy is so rewarding to my psychological well-being. Being immobilized, in a hospital or just too sick to do anything is immensely depressing. I hope you and your bf get through it

Meanwhile, take good care of your body and feed it soup, nutrients and calories as best you can. Read a book or learn to play guitar on the couch while you're waiting for your diagnosis and future recovery. The feeling of mastering something, anything, is important. I'm no doctor, but do you recall if they checked you for pernicious anemia?

All the best!

Hi guys, thank you for the helpful suggestions and i'll try them out, I've never heard of Ensure, but I did used to have Complan, until that started making me sick too. I have found that anything Dairy, and anything containing either canola oil or vegetable oil is a huge no no.

Wendles, I love cadbury drinking chocolate! But oh boy do I pay for it afterwards unless I have it with soy milk. I drink several powerades and also sports aid or something like that. My gp recommended the powerade and other sports drinks.

Aerv, I am addicted to Sylvia Day books at the moment, and I also do a lot of crosswords etc when I'm not on my laptop. No they didn't check for pernicious anemia, I've actually never heard of it till now.

Hey holly, check out the ensure I know you can get it in new Zealand and I'm pretty sure it is lactose free it is in a powder form the one we get and we mix it with water. I hope all turns good for you soon take care , Wendy

Hi Holly. I just read your message. My heart goes out to you, friend. I've known someone facing similar struggles, and I know how much encouragement can mean when you're in the midst of it all.

So if I may, I want to add my voice to the others that have offered you some encouragement here and let you know I'm praying for you!

I like what Aerv said about how doing daily routines and keeping your mind busy can be "rewarding to your psychological well-being." Very well said! I'll bet it was cathartic for you just to be able to put into words a glimpse of all that you're dealing with. I'm hopeful that you'll be able to experience some much needed relief soon, and I, too, hope that you can get back to some of your favorite activities that you love to do!

Cool I'll keep an eye out for the ensure and see how that goes once I find it

nclc611, I don't know what cathartic means so I can't agree or disagree haha.
I do enjoy writing though because so much happens in my non-eventful days that I don't remember what I did or didn't do, and how I felt, so writing it down helps me to arrange everything mentally and figure things out when just thinking about it alone doesn't, if that makes sense?

I went for a walk with a friend today, we walked 8km/5ish miles... Keeping in mind this was more of a stroll than anything since I told her we wouldn't be going very fast otherwise I would keel over and half die on the sidewalk. It was really hard to do it even though I used to be able to do it just fine, but I feel better within myself after doing it, even though my body is screaming at me and it's annoying me since 8km used to be nothing!
She has recommended I try the Paleo diet and is willing to help me out since she herself is on the diet just because. I am willing to try it, but I want to talk to my surgeon first to make sure he thinks it's a good idea. Has anybody tried the Paleo diet?

Hi Holly,

Cathartic simply means "a way to release emotions" or "express yourself" so as to get something off your chest that's bothering you.

Glad to hear you are able to write down your thoughts and to try and keep up with your walking. It can definitely help you to keep your spirits up and provide some relief!

Sorry I don't have any info on the Paleo diet to share. Try and have a good weekend!

Oh thanks for the definition nclc611 I guess it is cathartic then
Yeah it was good for a change but man I was shattered afterwards so I'm not sure if that was a good thing or not.

It's 2am here and I really want to be wrapped up in bed fast asleep but oh no I'm in the midst of severe nausea, cramps, bloating and very bad abdominal pain. I can feel my gut churning and moving things around and I know it would help if I was able to have a bm but I can't. I'm having to type this between the spells of being doubled over. I'm so so tired :-(

Since this is the Your Story section, I thought I would introduce my horses, they are my life even though I can't do a lot with them at this point in time.

This is my big gelding Mitchell, though he goes by Mitch (and many other un-forum-friendly names some days).
He is an ex-racing thoroughbred, born in Australia out of an American Mare and by a Japanese Stallion. He is 10 years old, 16.1hh and built like a brick outhouse. And he is brown, not bay.
I got him on December 8th 2010 just after he had finished racing as a 7yo. He is the class clown, everything is a joke to him and he will do anything to get attention and to get laughed at. Including splashing in great big puddles in the middle of winter to get anyone holding on to his lead rope drenched. He's awesome to have around though at times he can throw in a decent buck, he has gotten me off once doing this.
I showjump him and I also do a little bit of pleasure showing on him. He learns far to quickly for his own good and gets very naughty if I don't keep his mind occupied. Mum says he is like a naughty little schoolboy, everything is funny until he gets in trouble, and then he sulks.

Then I have DJ, she is an 11yo thoroughbred with a sketchy past that has caused her to be a little weary around humans. She is extremely unpredictable and needs a very cautious and caring person to care for her. She demands patience, and she can lash out at those trying to help her very quickly. She was responsible for breaking my foot not long after we got her due to panicking and rearing up on the lead rope, then landing on my foot.
She is a bay with a star, and she has wonky back legs. She is only 14.3hh, though she can live off the smell of an oily rag! Little fatty! She was learning to show jump before I got sick, and was showing real promise in it for a late starter. She is a very sweet wee thing once she trusts you, and she gets all her confidence from the person riding and handling her. So far we have had her since August 2012 and I have been the only person to ride her as of yet because she rears when she panics.

And then we have Gemma. Gemma is 9 years old, and a category B Miniature horse, she is 37" tall to the wither. We rescued Gemma as a 3 year old, she was morbidly obese and almost completely unhandled. She got very sick after we got her, she got laminitis. She should have died from that but we caught it early enough to save her, and 5 years on she is the most pain in the butt, awesome little hairy mammoth out. Most people have guard dogs, we have a guard mini, seriously, she hears a car, or a gate latch and she whinnies out.
I remember convincing mum and dad to let me save this miniature horse, we arrived at the place with a horse float and the look on dads face was priceless :rof: both him and mum were expecting this cutesy little knee high fluffy pony that was little and cute, and out comes Gemma, morbidly obese, horrible hooves, no manners, hauling my backside to the front gate.

She is now broken in to ride, though nobody rides her as all of us are far too big to ride her. She jumps amazingly.... Out of her paddock to get to the grass. She also knows several tricks, including kisses, bowing and handshake to name a few.
Since she got so sick when we got her, she has to live in a dirt paddock having only hay for the majority of the time, her diet is extremely strict. But when she is allowed to have grass, we tether her do a dog run line on the lawn and she's a pretty good lawn mower.. We don't have crop circles, we have pony circles on our front lawn :lol:

Wow Holly

Your horses are gorgeous!

I read your story. Hang in there honey. This forum is great, very supportive and full of good advice and good people who know what you are going through.

Take care.

Carol
x

Hi Holly, welcome to the forum.

Regarding Ensure, I recently started drinking it to help with my weight. I just recently turned 30, and was diagnosed with Crohn's at the age of 8. Ensure states right on the bottle "suitable for lactose intolerance" or something along those lines, so I have to believe it's lactose free.

I'm not sure if this is available in New Zealand, but there's also Boost, which is similar to Ensure. I'm pretty sure that's also lactose free, but I'm not 100% sure about that.

Love the pictures of your horses. Even though I'm 30, about once or twice a year I like to try to go to a stable about 30 minutes from my house for a guided trail ride.

Hang in there. I think you'll find people on this forum going through similar things you're going through.

Thanks guys, I have a lot of fun with them when I'm able to.

Thanks CeeCeeGo, that was why I finally decided to make contact on here, I've been lurking for a while and decided to make an appearance.

MCPayne, that's always good to know thank you, I try to stay dairy/lactose free as much as possible since I know that too much doesn't agree with me... Much like anything else right now though.

I have heard of Boost, maybe I'll venture into town and find some when I'm able, or get mum to do it for me haha.

Thank you, it's good fun and a brilliant stress relief when it all goes the way it's meant to. I find it helps a lot with my back too, though many will tell you otherwise. My two horses have quite long, smooth striding so they really help me keep my core strength up which is the key for my back pain, though surprisingly I haven't had too much of it for a little while now even though I'm almost fully inactive.



I am currently on a sickness benefit and was meant to attend what they call a youth pro seminar, it's about getting youths on the sickness benefit to return to working or studying and I was really looking forward to it but I've had another flare of both whatever this is, and uh... Mother Nature... So everything in my general abdominal area is extremely inflamed and painful to the extent where I literally can't see straight and I am home alone, incapacitated on the couch, typing between times where the room is swaying. I just had to call the seminar place and explain between breaths of pain why I'm not likely to be attending tomorrow. That was fun, since the amount of pain itself is causing nausea, which I haven't had before in that sense. I think I will stay on the couch and watch the Vampire Diaries until mum gets home.

In other news, tomorrow I am seeing my surgeon, and I called in ahead today and it sounds like they have my calprotectin level results back so hopefully that leads to a diagnosis, otherwise it's off to Wellington for a capsule endoscopy. Either way we are moving forwards and even though I'm rather scared of the outcome, I'm glad something is finally being done about getting forward to a diagnosis.
Over and out, just got a stabbing pain through my gallbladder so I think I'll just lie here and do nothing as much as possible.

Not sure if I'm getting a bug or what is happening :-(
I'm going from shivering to sweating constantly, have a rather large headache, sore eyes and ears. All my joints from neck to toes are aching enough to bring tears to my eyes, not very often I cry from pain at all, and tears on my face make it itch like crazy. Now and again when I breath in deep-ish I get a stabbing pain through the back of my ribs near my spine on the right hand side. I was really tired before but I'm not now, I'm a little tired but not shattered? I refused to eat dinner, home made fish cakes, I love those!
My face, ears and hands feel like I'm in a sauna, but mum touched my face and said it's cold, same with my hands, they are pale and I have white/purple nail beds.
I feel like i need to cool down but as soon as I take the blanket off my feet, or take my polar fleece hoodie off, I go freezing and shivering which doesn't help the muscle aches.
I am drinking plenty of water though, and I had an electrolyte drink today also.
Do I stay here and try to sleep in off overnight, or is it more serious and I should be going to the hospital? I live in a rural community around a half hours drive to the hospital, but I am also seeing my private surgeon tomorrow at 2.25pm, do I wait till then or go in now? I don't remember feeling like this while getting a bug, ever, but my immune system is low. What do I do :-(

This come on rather quickly also, I've had baaaaad period pain all darn day, but I started getting achy joints only maybe 2-3 hours ago? And since then I have progressed to having the other symptoms. I have no nausea or bloating though, but varied amount of abdominal cramping that comes in waves.

In general: if in doubt, seek medical attention because you know your body best.
I do not wish to present and scare you with this but I have on two separate occasions had my left lung collapse for no obvious reason at all (it's called spontaneous pneumothorax). I would feel a stabbing pain in my back ribs for some days, almost like shoulder bone pain whenever I inhaled deeply. This condition will reduce oxygen supply to your blood. Finally got myself checked and it took the doctors some time to arrive at diagnosis by finally doing X-ray. Not really dangerous it was easy to fix. Weird stuff. But that condition only accounts for <1% of cases where my rib muscles are tense from workout or whatever and I get the same stabbing sensation every now and then. You seem experience something systemic I really can't or won't speculate what, you should decide yourself if you should get going... Good luck!

Thanks Aerv, I think I'll stay at home for now, if it gets any worse i'll go in, but I'll have a bit of a sleep for now I think. I'll bring it up with my surgeon tomorrow whether I feel better or not, he probably should know everything that's going on whether it could be related or not.
Plus if I go to the public hospital they will probably try to give me ibuprofen and send me home.... I can't have ibuprofen! More because my surgeon said i'm not allowed to, so I'll follow his rules before i follow those of the public healthcare around here, considering they misdiagnosed my uncle with cancer and wrote him off as dead rather than diagnose the massive stomach ulcer he actually had.

Hi holly, hope all goes well tomorrow and you find out a bit more info. Fingers crossed for you, Wendy

Ok so the surgeon has said I do have Crohn's disease and he is starting me on pentasa and prednisone today. I have to work up to 8 pentasa tablets over 4 days and work my way from 40mg to 0 of prednisone over the next 5 weeks

Since being on the prednisone I've noticed that my joint pain has gotten worse, i had several people tell me it would get better and go away but it's done the exact opposite!
My knee's, hips and shoulders hurt the worst, often stopping me from sleeping, and doing things during the day that I had just started to do again, like feed my horses.

The first week of meds I felt pretty alright, I was still iffy about what food I wanted to eat even though I was craving lots of foods like mad, I would still look at them and go uh, not sure if I want that, I lost 3kg more last week though I was told I would put on weight due to the prednisone.

I'm into my second week now, and on 30mg of Prednisone as well as the 4g of Pentasa, and the joint aches are getting worse, but I'm having trouble distinguishing whether my hip pain is actually my hips themselves, or whether my kidneys are aching? I've never had either before going on the meds so i'm not sure what to think just yet.
I have found with the hip/kidney pain that I can't sleep on my side, I have to sleep propped up on my back, and even then I will wake up 5-6 times a night minimum.

I've had a couple not-so-flash days, where I figured maybe I had ate something that hadn't agreed with me, and I found that I could taste the food in the back of my mouth, whether it was the first thing I had ate or the last, I've also been craving chicken teryaki and avocado sushi lately, I never used to eat sushi, never. But the sushi hasn't seemed to have set me off yet?

Today wasn't such a good day, the last two nights sleep have been terrible, I've been lying awake for hours over night, in a lot of pain from my joints and constant waking when I finally do get to sleep, I have zopiclone but that has no effect even on a double dose, so I don't bother taking it.
So now I'm really tired, and therefore grumpy.

But I had my first "normal" stomach upset today, until now on the meds I've just had an off type feeling, and bloating, with minimal nausea and manageable pain levels.
Today I was back to how I normally am, pregnant-looking, doubled over crying in pain and extremely nauseous with rolling cramps that get stronger every time they come back, plus in the bathroom every 10-20 minutes. I'm not sure why, if it's something I've eaten today or if that means the medication isn't working as it should be?

I really just need a decent sleep, and my surgeon said to report to him if I feel off, so I might call him in the morning and ask. But I only saw him a few days ago and he was happy with how I was progressing, saying "Well good, the meds are working so it's definitely Crohns disease" and he also said that if the meds hadn't been working then he would have to look for another cause of my issues, but Pentasa and Prednisone doesn't work for everyone the same way surely? Just the way that every other pill effects people differently? I'm confused, I'm tired. I was having a better upbeat week until now! Grrr!!

I'm on my second to last dose of Prednisone today, tomorrow is my very last dose of it at 5mg... and I feel like crap.
Everything I've been eating lately is not agreeing with me, even my "safe foods". I'm back to the day in day out stomach cramps/nausea/bloating and everything else that comes with Crohns.
My sleep has been terrible for the past week or so, just because the amount of pain i'm in stops me from being able to sleep, nothing I have found so far helps at all.

I've also been getting these really random, out of nowhere urges to vomit. Like, I'll be sitting on the couch doing nothing, just chilling out, not feeling nauseous, and all of a sudden I get this huge urge to vomit, but so far nothing has come of it. The urges can last up to 5 minutes in one go, it's really strange considering i'm not nauseous when it happens. It used to happen in relation to my agoraphobia, but I'm not having agoraphobia attacks when this happens either.

I have now learnt to make myself burp, I can force myself to burp without having to suck in any air first, this doesn't very often help relieve the distention in my abdomen but it seems to have become a habit now? It's all so weird.

I see my surgeon again on the 11 December, he ordered new calprotectin tests and blood tests to see how the meds are helping out.
He wants me to try and get all of my iron levels back up via food rather than supplements, but I can't eat red meat (that hurts real bad now, I was good for around 2 weeks), Strawberries make me gag unless they have chocolate on them or are in a smoothie, it's the seeds, I have always had issues with texture of food. Just like I have never eaten tomatoes, watermelon, or yogurt with bits in it etc.

I had a luncheon, and salt and vinegar chip sandwich yesterday, on plain freshly made white bread. What a mistake that was. The craving was huge, don't ask why, weird craving?? Not even 10 minutes after eating the last bite I strongly regretted giving in to the craving.
1. We were at a jetsprint track, in the middle of nowhere, with no decent toilets, and a very bumpy ride back to the main road on farm tracks!
2. My shorts went from being pulled up every 5 minutes to having the button and zip undone.
3. Even sitting down in the very comfortable car (06 holden commodore) was painful, simply because that meant closing my hip angle to sit down, which made me feel like I had a restricting band around belly button level.
I have double belly bars, even they felt tight in my skin! That hasn't happened before!

Thought I was making progress with this, what a joke. I'm now able to tolerate even less foods than I was before, water is my enemy once again, but I can't just not drink and risk dehydration. Now instead of constipation, I can go up to 10x a day but still feel constant pressure in the area, with the leg pain. I'm afraid to look at food again.
We had corned beef for tea, I had a spoonful of mashed potato, and a mouthful of corned beef before declaring myself feeling full and stopping. Now I'm back to the stomach cramps which are worse than before. I can't win.

I made my own gluten free, dairy free bread this morning, hoping I would at least be able to eat that even if it was by itself. 3 bites in to a very nice freshly made loaf of bread.... In come the cramps :-(

I had fresh fish for dinner tonight, it was cooked separately from the rest of the family who had theirs crumbed and coated in canola oil. Mine was just plain. Halfway in, the cramps that were already there got worse, and the nausea kicked in.

Now I have a rather large headache, and extremely sore eyes even though I'm wearing my glasses!! Could that be related or am I stressing myself out and causing more stuff to happen?
My knee's hurt really badly today too, I've never had trouble with my knees before, bar one minor ligament injury to my left knee several years ago, but for some reason my knee's are just so so sore now!
Mum and dad both said I have to ring my surgeon tomorrow and get an earlier appointment, I tend to agree, but that means expending energy to 1. Ring and book an appointment, and 2. Actually get to the appointment. I'm much happier just snoozing on the couch and forgetting about life.

Ugh. Lying here very late tonight. I wish I was asleep but my belly is busy gurgling away and twisting and churning or whatever it's doing in there :-( whatever it is, it should stop cause it really hurts! I've taken my ondansetron and some tramadol but i get getting the random urge to vomit even though my nausea isn't too bad. The tramadol however is not doin it's job at all :-( I'm not even at home I'm at my boyfriends place. He starts work early tomorrow morning so I don't want to bother him since he's asleep.
The only upside if being at my bfs house is that the toilet is less than 5m away. But the walls only have gib on them at the moment... No insulation so I'm too embarrassed to use the bathroom unless I absolutely need to. I'm so tired :-( I have stuff I need to get done tomorrow so this better subside a bit before then.
I've also just started getting stabbing pains in my gallbladder area, brilliant. Just what I needed.

Also, I made another thread for this but got no replies so, what do you expect as a parent in the way of house chores from your child with Crohn's? I'm happy to do chores around the house and all but lately I've just been too tired or too sick to finish them all in one go. Dad understands and he's fine because he knows I will eventually finish what I started but mum goes off her tree if I haven't finished everything in one go. I've tried to explain how I'm feeling and that I will finish the. Hires hut I can't do everything in one go right now. It's a struggle to get off the couch to go toilet let alone having to stand and do dishes in the kitchen that aren't even mine. Unloading and reloading the dishwashers is even a pretty big task for me at the moment and I don't understand why the two other kids in the house (9 & 15) can't at least take part in house chores too. I mean heck how hard is it to out your own dang plate in the dishwasher once you've finished with it. I'm not complaining about having to do chores mind you, I just need help in making my mum understand how physically hard eveything is right now. I mean for goodness sakes I wore the same clothes without changing or showering for 3 days and nights and didn't even brush my hair because I it didn't have the energy but yet I'm meant to be doing house chores? I was riding again but I'm not now and haven't done for the past two weeks because I just can't do it.

I was meant to see my surgeon again last week but got a phone call to say they has to change my appointment. That was fine, I had enough pills to get me through. They rebookede for Monday at 4pm (today) and I have just gotten a phone call saying he can't see me today but will on Wednesday. Are you kidding me? I've now run out of tablets even though I always keep a spare stock. I'm in a lot of pain and haven't consumed anything but water since Friday. I'm losing 2kg or more each day. I need to see somebody. I'm currently in the next town over at my boyfriends house and since my plans for the day have been cancelled, I'm going to spend my day trying to find a gastroenterologist. My surgeon is very good don't get me wrong, but this isn't the first time he's suddenly cancelled appointments on me and I'm getting worse not better so I need somebody reliable behind me

Seriously how hard is it to get good medical help where I live. Have run out if anti nausea pills and can't get any from surgeon because he isn't there. Gp seems to think he can't because he never gave me any which is a lie because he prescribed them to
Me first. Went into hospital to gastro dept who said they can't help me because I need a referral, I was referred and they mucked around a while back. Drive round town to two different supposed addresses of gastros, one lead me to a foot clinic the other to an empty private hospital lot.
Tramadol and acupan aren't touching my pain levels at the moment. I can't eat or drink anything. Two mouthfuls if water this morning to take my pentasa and 5 minutes later I was doubled over in pain and looking very pregnant.
I have no idea what to do now. I don't want to see my surgeon again since he's proven himself to be unreliable but I can't not see him because I can't find anybody else :-(

Hi

:banana::banana:Hi holly, I read your story. I'm sorry to hear that. My son was diagnosed with Crohn's at age of 10. He drinks 4-5 bottle of Ensure every day. Ensure can make him gain weight. Look at the pictures, he really likes your horses.
Everything will be better. Hang in there.

Hi mina, I can't even stomach water at the moment so I'm honestly too scared to bother trying anything else. I don't know what to do short of going to the hospital for IV rehydration, but they're that crappy and hopeless that I would have a better chance of sticking myself in the vein correctly with my eyes closed.

I was meant to see my surgeon today, in an hour. I just got a phone call AGAIN saying that he has to cancel. This is the third time in a row, I'm still out of meds that I can't seem to get anywhere else. What am I meant to do? I hate this, I'd rather be dead than suffering through all this crap, on top of having non reliable health care. I feel like i'm dying anyway I'm in that much pain so what's the damn difference.

So soo hungry but I don't have the urge to eat? I have hunger pains now but I can't get rid of them because I can't eat anything, nor do I have any desire to, but my stomach seems to think otherwise.

I'm utterly shattered but can not get to sleep, my eyes hurt, my head is throbbing, my abdomen hurts, my joints hurt. I have multiple unexplained very dark bruises over my body, but they aren't round, they are long lines going across my arms and legs?
I keep losing feeling in my limbs, or getting tingling sensations in them.

And I have this weird pimple looking, very very painful red lump on my butt, sorry, don't know how to describe it, and I keep getting really painful mouth ulcers that show up suddenly with no warning, I have accidentally popped a couple over the last few weeks, YUCK.

I'm miserable, my mental health is seriously suffering at the moment as well and I'm sick of it. I'm lost with no idea on what to do. I thought I was finally getting somewhere with this only to be thrown right back to square one, both in doctors and in how I'm feeling.
I'm losing weight again very quickly, i've lost 4kg since yesterday.
It's summer, I need to be drinking water at least but I can't bring myself to do it, the smallest sips send me into agony not 5 minutes later and I constantly feel like I'm about to vomit whether I've eaten or drank anything or not.

Holly95,
It can be really hard to advocate for yourself when you are so ill. Is there someone who could help you call the doctor's office back and speak to an IBD nurse and explain how ill you are? You must insist that you are seen. If that doesn't work, try your family doctor, and if that doesn't work, go to the hospital and explain the situation. Some very serious complications could develop if you are not seen. Please call someone to help you. And please let us know how you are doing.:hug:

There are no IBD nurses around here, I only have a general surgeon, because I can't find a gastroenterologist around here anywhere either. So he was away, then we rung my GP office, he is away on holiday and I can't get into his registrar until Friday, and I have been to my local hospital, and also the hospital in a bigger town an hour away and neither will help me.

The receptionist from my surgeons office rung this morning and has booked me in for 3.05pm today, so if I get a call between now and then cancelling me again, I will be going in there and raising hell... Or collapsing and vomiting over their reception floor... Whatever happens first at the time, I'm past caring enough to be polite to any of them right now, and i'm trying my hardest to find a private GI and a dietician, but I'm really stuck in a hole with the medical care here.

This is why I want to move to the south island, to Christchurch specifically. I saw so many doctors while I was down there, both in hours and after hours, all of them helped me, all of them gave me the meds I needed at the time, all of them suggested practitioners I could go to in different areas, and there's just plain and simple a lot more of them down there than there are up here, which I think is half the problem.

Still not doing so good haven't eaten, reeeaally trying hard to convince myself to get up to have a shower but I just don't have the energy to want to get up, i'll end up having a shower last minute before I leave for my appt, and I'm kind of scared to be seeing the surgeon again, the pentasa is obviously not working, and mr know-it-all seems to think that pentasa is the be all and end all of crohns medications, so I'm a bit nervous to what he will say when he finds out the pentasa hasn't been working.

Hi Holly95,
Sorry to hear how awful you are feeling and how difficult it is to get care for yourself. You could ask the doctor about trying enteral nutrition while they try to sort you out. That way you would be getting nutrition and hydration and you would not be risking an obstruction if you have some narrowing somewhere (if you are not already obstructed, which from your symptoms is a possibility). There is more info about EN here: http://www.crohnsforum.com/forumdisplay.php?f=161

and in the Kids with IBD thread under Treatment Clubs: http://www.crohnsforum.com/showthread.php?p=694576#post694576

I sure do hope that you get some help at your appointment.

Thank you happy, I'll ask about that this afternoon.

I wouldn't have a clue how to tell whether I was obstructed or not, so i guess I had better ask about that too, I should also get my blood test and calprotectin results back today.

Thanks, me too, and if I don't I'm going to be demanding he refers me to a private GI, though even if I do I will ask about being referred anyway... He can't honestly tell me that a private surgeon won't know where to find a GI in one place or another

Just got home from the surgeon, he seemed to be extremely confused as to why I've relapsed after coming off prednisone, and is putting me back on it, yay me. but before I can start it again I have to do a fecal calprotectin, they had me do one on my second week of pred the first time and my levels had dropped right down to 22.
He wants to see how much they've gone up again before he decides to combine my pentasa, with aza, whatever that is.. I haven't searched it just yet.

He also did MORE bloods, tests for liver function, potassium, iron studies, full blood count, C-reactive protein, creatinine, and sodium.. But not for B12? should I ask specifically for that next time? I just find it odd that he hasn't checked that at all yet, when I'm STILL anemic, I have this headache that just will not leave, I've been bruising incredibly easy, and I always seem to have tingling from knee down in both legs, sometimes in my fingers and hands, and my memory is disgustingly poor at the moment.
I'm seeing my gp's stand-in doctor tomorrow, should I request that he/she sends me for B12? Or anything else as well?

Hi Holly95,
Great to hear that some action for treatment is happening. Yes, he should check your B12. You may need injections for this and also iron infusions depending on your level. I am paging forum member DustyKat who is more knowledgable on what labs to order.

Yeah but I feel like he hasn't heard a lot of things that I said.. So still searching for a GI.
I'll ask the doctor I'm seeing tomorrow about it, he might even recommend I wait till monday and request the test through my surgeon since he is the one attmepting to treat my crohns.
He wants to put me on iron supplement tablets starting monday if the bloods from today come back the same, which makes no sense to me... I can't eat, why would they come back any better than 2 weeks ago?
He is however, reluctant to put crohns patients on iron tablets because he is worried they could cause a blockage, so I may try Floradix liquid, I have't heard of iron infusions ever before though?
Thank you

Hey Holly…:ghug:

I haven’t had the opportunity to read the whole thread so I apologise if I am repeating what has already been asked…

Where is your Crohn’s located?

Have you had imaging of your small bowel done? That is an MRE/CTE?

I well understand the issues you are having finding a GI near to you, we are rural and the closest to us is a 6 hour round trip, but I can’t emphasise enough the need to see a gastroenterologist. A surgeon, and a general one at that, is not the person who should be calling the shots on how to manage a chronic condition.

Most of the bloods you are having done are useful so that is good. These are what I would deem good all round bloods with the last few tests particularly useful in IBD for sussing deficiencies that may be present:

FBC (Full Blood Count)
LFT’s (Liver Function Tests)
UEC’s (Urea, Electrolytes, Creatinine)
CRP and ESR (Inflammatory Markers)
Iron Stores
B12
Vitamin D
Magnesium
Zinc
Calcium
Vitamin C

Dusty. xxx

They don't actually know where my crohns is located yet.. Well, if they do they haven't told me.

No I haven't had any imaging done, that only type of imaging I have had was an ultrasound and that was when they had no idea what was going on, so were checking my gall bladder and kidneys.

Yeah, I'm not impressed at only having a general surgeon, I'm trying my best to find a GI, but the only one's I've seen so far need me to be referred to them, and I get the impression that my surgeon won't refer me.. He thinks very highly of himself, which is the nicest way I can put that.

Thank you very much, I am seeing my GPs stand in doctor this afternoon, so i'll write those tests down and discuss it with him, I haven't met him before so if I'm lucky he'll have more knowledge than the doctors so far, or a differnt take on things. Can I ask my gp to refer me to a Gastro, or is that the wrong way to go about it since it is the surgeon trying to treat things?

I saw my GPs stand in doctor today, and he was a wealth of knowledge. He had already read my entire file before I got in the door (loooong read) and already seemed to know exactly what I was coming in for!

Before I bothered starting I specifically asked how much he knew about Crohns Disease, and he goes, "I know a lot about it, I'm qualified" I replied that doctors qualifications mean nothing to me and explained what I had been through, and his reply was "No, I mean I am qualified to treat Crohns disease, I studied that specifically after finishing med school, a good friend of mine has crohns." Well, ok then lets get started!

We went through all the blood tests I had already had, which were textbook, and my iron was even HIGH? I'm guessing that's from being on the prednisone and absorbing things for once maybe?? First time in my life I haven't been anemic. He printed out all my results for me. We also discussed the tests that DustyKat suggested, I had them written out and asked him about them, he agreed to every one but advised against zinc because that's not a common test in NZ and is quite often rejected by the medlabs because its so expensive to test for, we would have to pay several hundred for that test alone. And also Vit D, again it's not a common test and the NZ medical "things" say to just treat it if you suspect it, because you can't overdose in Vit D.

He added my requests and phoned the lab to add the tests in so I didn't have to sit through another needle stabbing session. He also added another diabetes check, because why not?

He also prescribed me some other anti-nausea meds, one was cyclizine, I will type the name of the other when I remember it, he explained how each works, I said as long as he wasn't going to prescribe maxalon I was happy. He said he only ever prescribed maxalon for chronic migraines because of the high risk of some very complicatedly named reaction, also known as the neck locking and eyes popping, which I have already suffered through.

We talked about me being unhappy with the surgeon I am seeing, and he said to discuss with the surgeon about getting another specialist in, we both agreed to not do it behind the surgeons back, as more of a courtesy thing. but he did say that if my surgeon denies my request of getting a different specialist, or a second opinion, then he himself will refer me to someone that treats his friend with Crohns.

He took my blood pressure and weight since he was giving me my next set of contraceptive pills, I have lost 2kgs(I'm now 68kg, before I got sick I was 85kg, I'm 165cm tall) in the last day, but my blood pressure was textbook, it always used to be low.

Funny thing... Mum said to me partway through "you need to marry a doctor" and before I could reply I turned around to see the doctor smiling, laughing and replying with "Is that a proposal?" I couldn't help but laugh, since he is young and very fine on the eyes (and irish, bonus!)

After leaving the office... I will admit I googled his name to see if I could find out where he works when not playing stand-in, I would far rather he was my GP, even though my GP is very good, he has an extremely limited knowledge of Crohns, and this guy knows a lot, he explains it easily, he is very helpful, he LISTENS, and he has a good sense of humour, which is always a bonus.
I didn't find out where he normally works, but I did find a list of his big qualifications.

I still feel like crap physically, still can't eat etc, but feel a lot better mentally today after having my faith restored in some of the local health care.

The other anti-nausea med is called Domperidone... I've never heard of it before, and I'm a bit nervous to try either that or the Cyclizine since I have had neither before... After the Maxalon episode I'm not keen, I went through something called Oculogyric crisis, which is some sort of Dystonic reaction, and the Valium and Kemadrin I was given to fix that reaction, made me extremely ill the next 3 days even though I only took one dose of each at separate times.

I noticed tonight, yet again... That it is not my imagination playing up on me, but I actually have got mucous with my stool. I never used to have that as far as I'm aware. Should I be concerned? It's sometimes clear and sometimes the same color as the stool. I mentioned it to the surgeon yesterday but it just kind of went passed him I think, and I forgot to mention it to the doctor from today, as well as my slightly, but constantly swollen submandibular gland on my left side. It also hurts to touch, but is not so bad today, so I forgot about it. I need to write these things down on the notepad in my phone, goodness me :ybatty:

Am I turning into a hypochondriac now??

And now I've just noticed a painful marble sized lump on one butt cheek. The only reason I noticed it was I sat down on the couch and it hurt in that spot. Doesn't look like a pimple it has no head. I swear it wasn't there earlier? What on earth? Everything is popping up all at once now. I have no idea what this lump is meant to be it's just quite happy sitting smack in the middle of my butt cheek. Now I really feel like a hypochondriac.

Glad to hear that you are getting some help. keep an the on the lump to make sure that it isn't an abscess. these are threads about abscesses: http://www.crohnsforum.com/showthread.php?t=20887 and
http://www.crohnsforum.com/wiki/Abscess

Thanks happy, I just hope the help stays around and stays helpful! He is only in the clinic while my regular GP is away on holiday over Christmas.

It could be an abscess I suppose, do they come up that quickly? My bf had a sebaceous cyst on his shoulder, and under his jaw, it feels the same(hard) and looks the same relative shape as one of those, except it hurts when anything touches it and it's reddened. Guess I'll be asking whichever medical professional I see next.... That will be fun, the only time I've had anybody looking in that region was for my colonoscopy but I was fast asleep before they even pulled the scope out of wherever it was hiding, so I don't remember the procedure, so it doesn't count.

However, I start my prednisone today, so fingers crossed it works and I'm lucky enough to suffer no side effects like last time!

Im in the process if having a bit of a mental meltdown at the moment. It's late at night. I'm at my boyfriends place and he has work in the morning so he's sleeping. I purposely left his room to have my meltdown and I'm now in the shed because I don't want to wake him he's tired and stressed with his job. I don't even know why this happens. Every time I want to let go and show or tell someone how I'm feeling my walls just won't let down. As soon as it's a bad time or place to have a breakdown I'm a great big blubbering freakin mess. I just want it to stop.

Christmas day here now, just had to suffer through lunch with the family and all the questions that come with it.

The likes of "My you look pale today." -actually, I have more colour than normal... Soo, that's awkward...
I've also had "Try the salad, it's healthy"
"You need to eat something"
"Have you tried Gluten free?"
"Tried dairy free?"
"Tried natural milk from the vat on the farm?"

Oh for crying out loud just P*** off before I kick the Christmas Tree over and break the Reindeer on the damn mantle piece! It's Christmas day, not "Tear a strip out of Holly day!" -There are many unforum friendly words I am thinking right now....

Just feeling very thankful my boyfriend is here with me today, we are going to his place later, his family is a lot easier to deal with, if they ask me questions they don't feel the need to repeat them every so often, and they ask out of curiosity and to see if there's anything they can do to help in any way. They don't bother me about not eating, and they don't judge me for being quiet or a bit tired looking.
On the upside, I got a gorgeous Baby-G watch from my bf, I chose it out but that's not the point lol. It's white with a pink face, and it's digital, exactly what I wanted.

Darryl watched me getting hounded for not eating the lunch that is set out on the table, so he quietly had me fill up my plate in front of my family in the kitchen and we then sat in the lounge to "eat" when in reality he ate my food for me, it seems like a small insignificant thing to many people, but it gets rid of several very repetitive questions from the family, since they now think I have eaten a plate full of food. He makes my life a whole lot easier, in some really random ways. And he is literally keeping me biting my tongue, don't think I would be able to do that without him here.

On the upside, Merry Christmas to you all whether it has yet to turn into Christmas day wherever you are, I hope you all have a good day, and try to enjoy it the best you can no matter the turn of events. I know I'm certainly doing my best to keep a smile and quiet polite nod going on until I get the opportunity to leave this house.

Is it strange that just the mere thought of having to eat something sends my depression spiralling downwards even faster? I just find that if I'm not in too much pain to eat then I'm too depressed to want to eat anyway because I know it's likely to cause pain

I am so sorry for what you are going through. Last night there was chocolate pie. I knew I shouldn't eat it. Tried to talk myself out of it. I've been on SCD for months and have been so good. Well I ate it and was up until 2am with stomach and intestinal pain. I finally took a hot bath and a pain pill so I could get some rest. So, I know how you feel. Is it fair? No. Will I eat chocolate pie again? Not for a long long time. Sounds like you have a wonderful boyfriend.

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.

I have tried scd but don't think I've been on it long enough yet. I'm finding this time round that the prednisone actually isn't cutting it, boo! Has anyone else has prednisone and it hasn't worked? I'll likely be put on aza next month but my surgeon isn't in till then so I have to deal with everything till then at least. I'm so tired all the time even with the steroids! And I have no appetite still. Hmm

Chocolate pie is amazing! Until you come to the aftermath :-( I'm trying so hard to stay positive about things but when your sitting there watching your friends have the time of their lives and getting where they want to go it's really difficult. I'm getting nowhere except out of bed every day.

He is amazing, a royal pain in the ass about 50% of the time but I wouldn't trade him fr anything (except my health some days). My 19th birthday is in February and I've been really down lately so not only did he buy me the exact watch I wanted but yesterday he turned up with a set of Jose eber giraffe print limited edition hair straighteners saying happy early birthday! Holy crap! He knew I wanted them but I was prepared to get them myself. Now my dilemma is what on earth do I get him for his 21st on January 16?? Think holly think!!

What a great boyfriend. Not everyone gets it!

He is great he's been with me for over 4 years now and we're still goin strong. His "mates" had bets at how long we would last together because everyone thought we were too far different to work out but shows what they know doesn't it!

Not feeling so bad today and had a decent sleep which would have helped loads but woke up at 6:15am and couldn't get back to sleep! What a rip off haha. I haven't eaten anything yet but water isn't hurting this morning so maybe today will be a good day, I hope so cause the rest of 2013 hasn't been anything worth remembering and today is the very last day of this horrible year

Starting to get a little nervous now, I'm on 20mg of Prednisone, but my surgeon wants me to drop straight from 20 to 0mg, and when I've already contemplated going to the hospital twice on 30mg, and once this week, dropping from 20-0 makes me really nervous.

I have gained 2kg in the past few days but I think it's gone all to my belly since I look very very pregnant at the moment and it just will not go away.

I've also been living off my domperidone and cyclizine the past week or so. I've kept everything in a diary including food i've had and any issues, so I can accurately tell my surgeon whats going on next time I see him, and ask again for a referal to a GI

Holly, how long have you been on pred this time?

Hi All .I have had this disease for over 40 years I had an emi colectomy in 66 but today I am realy sick have the trotts as we say in the uk black tongue all pain in my joints what to do ? Also I have cancer having had my bladder and prostate taken away 2006 so I would like to talk to someone in same situ .Best regards urostar

I've been on the Pred for 3 weeks now, started at 40mg

Holly, I would expect after 3 weeks you should be tapering of the pred. I think you are right there should be a taper of some sort.

Yeah I am tapering, I was only on the 40mg for one week, then 30 for a week and now 20, I'm just worried about going straight from 20 to 0, last time I started at 40, my taper went 40, 30, 20, 15, 10, 5, 0.. This time it's just 20, 0.

My surgeon isn't back in until about the 26th January so I can't see him before then either, I've just got my fingers crossed that going from 20mg to 0 doesn't go really badly

Have you discussed this taper with your GP? When are you suppose to drop to zero?

Generally if you've been on Prednisone for more than 10 days, you should follow a proper taper and going from 20mg to 0 might shock your system and could potentially cause Adrenal Insufficiency/Crisis. If I were you, since your surgeon is out of town, contact your regular doctor and see what they say about doing a slower taper (even 20mg-10mg etc might be better). Plus if you're almost out of Prednisone they could prescribe some more to help with your taper (some 10mg and 5mg tabs would be good cause you can break both in half if you need a smaller dose).

Keep us posted.

Thanks guys, I'm meant to drop on Friday, but i'll see if I can get into my GP tomorrow(thursday here tomorrow), he's usually pretty good about getting quick appointments.

Jennifer that's what I thought, I just hope my surgeon won't get mad at me for getting extra steroids from my GP, but everyone else in the medical world is back at work except him, so what else does he expect me to do?

That's alright urostar. I can't help you with that one as I'm still only very very new to this. If you make your own thread in one of the sections you might have better luck at getting opinions. I hope your gp can help, but I would try to find a GI if your able too. I'm trying to find one but not having much luck as of yet

Feeling so ill :-( it's Darryl's 21st party tonight and I should have been out there celebrating with him but ohhhhh no. Instead I'm stuck making trips between the bedroom and the bathroom. I've taken all my pills that normally help but not tonight. My entire body is shaking and even my hands are shaking violently. I can feel my heartbeat through my whole body and it has been changing between normal speed and really hard and fast. When it goes hard and fast I can even see it through my shirt in my belly area. I've had diarrhea all night and my butt is burning something terrible. Usually I go once every few days but every bathroom trip today I've been going.
The nausea is terrible and the spasms/cramps are just joyous, not.
Why does this always happen when everyone around me is drunk and can't drive me to the hospital :-(
I don't even know if I should go or not because everything comes in waves. I'm alright for a little while and can handle it and then all of a sudden it changes and I feel utterly terrible.

Hi holly, sorry you are feeling so unwell. What amount pred are you on? And when did you taper this amount?

I'm sitting in the hospital at the moment. The first nurse guy was really nice but the next lady to come in is a rude cow. After already telling her that my pain killers aren't working and I can't keep anything down long enough for it to work she is now wanting me to bring my hydration levels back up by drinking water and taking painkillers that I have at home. Do you seriously think if that was working for me that I would even be at the hospital?!

I'm on 10mg at the moment and only tapered to that yesterday morning

Not been doing so well. I've slept a lot since being discharged from the hospital. Can't eat a lot and what I do eat I regret shortly thereafter. I'm on a load more pills than I was, anti nausea and painkillers.
I rang my surgeons office, no answer. So I rung his private cellphone, he gave me the number for emergencies at any time, I got the answer phone. Left a message and my phone number and still haven't heard back. This was on Sunday. Today is Tuesday. I have up and rung my gp and I will be seeing him on Thursday. I just have to cope until then. I'm at my best friends house at the moment so even when I'm not coping either mentally or physically she brings me back up mentally pretty quickly. She's amazing

I've been having this really weird burning sensation in my throat at collar bone level, that little spot between your collar bones. It doesn't hurt or scratch like it would if you had a cold, it burns as if someone has stuck a lit match down my throat. It gets worse with everything I eat or drink. Though I'd definitely rather put up with that over everything else that's going on!!

My GP today agreed with me wanting a referral to a gastro, so I'm extremely happy to report that I have a referral in for a gastro in Wellington, it's a good few hours drive but definitely worth it if this guy is as good as my doctor says he is.
Couldn't have come at a better time because my mental health is rapidly declining about as fast as my physical health is.

I've started having tremors, I used to be very steady handed but on my good days now I struggle to make my handwriting legible. My doctor thinks this May be due to all the medications I'm on but nobody really knows yet.
I'm also getting a lot of acid reflux, I was driving along this afternoon and burped, as you do, only to have a whole lot of acid greet the back of my mouth. My instant reaction was to cover my mouth as I honestly thought I was going to vomit. Ooh that hurt. Normally it's the opposite and I have less than adequate amounts of stomach acid.
Then there's the bubbling feeling and pain in my lower left quadrant. It's about two fingers away from the top of my hip bone. Left side.... Say whaaaat?? Now I'm confused!! Normally my pain is around my belly button and on my right side.

This GI is a private one so hopefully we will get in sooner rather than later. Trying to stay positive as I sit here fully medicated in my bfs bed on his 21st birthday telling him to shut up and go to sleep so I can suffer in peace :-( we are meant to be going away for the weekend, we leave at lunchtime tomorrow and our destination is 4 hours away from Darryl's house.....
Good thing we are staying with an understandng friend who watched all of this develop initially last year.

I now have a confirmed appointment for Feburary 14th at 2.00pm for the private gastroenterologist in Wellington!! I'm really excited, but I'm also scared.. What if he doesn't find anything either? What if it's not Crohns but some other mysterious issue, what if what if what if....

I have also not been too bad the past few days while on holiday with my boyfriend, I was really worried that I would end up sick or something would go wrong but I was really good, and I got my nose pierced too and it seems to be healing up really nicely already

However, now that I am back home I'm back to being unable to sleep, and to feeling ill after everything I eat... i just don't understand it, I can go from eating utter crap food while away and not get sick, then get home and go back to not eating crappy fatty unhealthy food, but yet now I feel really ill again. Why?
I had Pizza the other week and was fine after it, I was full of american hotdogs and hot chips and crisps and fizzy drink and noodle canteen and lollies over the weekend and was perfectly fine, I get home and I've just had chicken kebabs for dinner, with a "salad" consisting of grated carrot, cheese and hardboiled egg for dinner, and mentally I felt better afterwards, but now physically I feel like I've been hit in the gut with a train.
I'm so confused.

Hi Holly I have a history of crohns going back over 50 years and if I was to eat grated
carrot I woul be on the loo every hour on the hour and in pain .regards urostar

Thanks Urostar, maybe I'll start by eliminating carrot and seeing how I go. I never used to like salad but now I enjoy it now and again and sometimes pay the price afterwards. Oh well

hi holly I have had to watch what I eat for many years I too like you enjoy salad but in small doses I eat lots of salmon and most fish I was a butcher for many years so I eat steak and chops .I love NZ lamb it is the best in the world .but take care off what you eat pasta and rice is OK with me .TAKE CARE FLOWER xx

Oh I love a good steak but I can't eat that at all anymore it really sucks!
I had teriyaki lamb ribs for dinner last night and was fine after, but that's where I get confused because one night I'll be fine eating something and then the next time I go to eat it I regret it shortly afterwards. I haven't figured out if I have changed something each time I have something to eat, or if I just get lucky on the days that food doesn't irritate me.

I'm going away again tomorrow, in for another 5 hour drive through what is known here as the desert road. Definitely worth it though to get to Tauranga, we spent hours last Saturday swimming at the white sand beach, it was amazing and the weather matched too! We don't have white sand beaches where I live, all black sand. I think I was most excited about the fact that I didn't get sunburnt though!
This Saturday however, is going to be a very very long day, with our day at the jetsprint track starting at 9am, and going to well after 10pm.... Hope I can last all that time!

hi holly .I look at your picture of ponies my mate has 7 on his fields they are top class
how do I post a picture on this site

My horses are my life but it gets to me when they're sitting in a paddock doing nothing because I'm too sick or tired to ride. I can always count on my gelding for a quiet plod round the paddock though.
If you go into go advanced under the reply box a new reply window will come up and under that is a box that says manage attatchments. You can upload photos from your computer there

Hi holly I feed horses every day where I live but they are much nicer than yours (COBS )they are show horses woody is my mate but he does bite he likes carrotts

Oh cool I'm very biased so I think my horses are the best even though they aren't flashy. Mitch is a bit of a show horse though he washes up really nicely. Dj is a rescue who is very unpredictable and is having to relearn trust with humans.
Cobs as in the gypsy cobs? Mitch loves carrots too it's the only treat he will eat, everything else he just shifts around in his mouth and then spits out once he's licked any flavour off haha

Awwww man... As soon as I get back from out weekend away jet sprinting!
I feel terrible, huge headache, sore eyes, feel sick to my stomach and my entire abdomen is cramping every few minutes. Very bloated and sore. Feel as if I'm going to vomit but can't be sure. Feeling gets even worse when I try to have a bm, as if I'm going to vomit rather than poop. Small amount of pain in my lower back, bearable though.
Took 2 panadol, 1 tramadol, 1 cyclizine, 1 domperidone at 7.30pm. About 45 minutes later now and no signs of improvement. If anything it's getting worse.
Going to sit in the shower. Boyfriend is home with me and I'm leaving the bathroom door unlocked just in case something happens and he has to rescue me out of the shower or something stupid.
Bad end to a great weekend :-(

My appt with my surgeon has been cancelled again. He is unwell and it sounds like it might be more than the common cold or stomach bug. It sounds like an ongoing issue so lucky I have an appt with a GI in a few weeks. I can't seem to eat anything without feeling I'll. have just tried some chicken and plain noodles and now feeling off, if it stays as an "off" feeling I'll be happy though

I started my vet nursing course yesterday, and as happy as I am to be back, I'm knackered already! Yesterday I was fine pain wise, today not so much.. Was ok till I had lunch and bam, pain and nausea (pain induced, I think).

I only have a half day tomorrow, so I will be able to come home and have a nap lol!

Friday is my first ever GI appointment, at 3pm, 2-3 hours drive away from home. I think it will be paired with some clothes shopping if i'm up to it, since my 19th birthday is in 13 days (Yes I'm counting!)

I went to a horse show last Thursday, it went horribly to start with... The night before and morning of I was really sick, and seriously contemplated just not going. But I did go, and started off with a ticking bomb underneath me, but by the end we won Best mannered horse, and I got 3rd in Best rider, so it was a good achievement for us for the day. everybody seemed to comment on how good we looked, which was brilliant. He cleans up pretty good.


Oh boy I was sore and tired after that one though!!
Meant to have another show this Saturday, but as much as I want to go, since it's literally 5 minutes drive away, I'm not sure if I will, I'm utterly knackered!

Hi Holly the cobs I feed are welsh quarter cobs cost 100s and Woody my mate is worth about £3000 he is a stud chestnut welsh cob picture will not unload ????:ybatty:

Oh cool, they always are beautiful. Mitch is worth a lot more than I paid for him. I got him as an off the track racehorse who had done almost nothing and have done a lot of training with him now. I had a high level dressage rider tell me she liked him at the show so that was a huge compliment coming from her.
It might be that the file is too big, I find that with a lot of my photos. I had to upload the above ones using a link from another website I already had them on.
3000 is worth around $8000nz I think, at a guess. That's quite a bit but the market here is a whole lot lower than what it is in the uk and many other places. So in nz the cobs would be worth around £1500-2000 maximum. Crazy how different the market is different

Hi Holly I went to give woody his apple today but Dave and Val who they belong to
put them into their stables out of the wind and the danger of trees falling i will try a picture again

well that was rubbish they are still to big I send pictures all over the word to OZ and NZ

Yeah the file sizes have to be very small, I find it really difficult to upload images from my pc.. If you already have some photos on the internet you can copy and paste the link into the insert image box, the little yellow one with the sun and mountain on it.

In 10 hours I will be leaving for my 2.5-3 hour drive to a GI clinic, for the first time ever. I am looking forward to it in a way but I am also a bit nervous as to what to expect. Things like what will he say or do, what will he ask me, will he want specific tests done, will he even believe me since most of my tests come back clean?
Couldn't have come at a better time though, I'm hardly eating right now due to everything I eat making me want to vomit, and sending me urgently to the bathroom.

Hi everyone, I have had Crohn's for 25 years now. There have been plenty of good days and bad days like everyone else. I was diagnosed with it by chance. At first my doctor as convinced it was an ulcer, but as I got worse and the weight fell off me my late wife called an ambulance.
At the hospital I was given x-rays which showed I had 5 abscesses on my pelvis. Luckily a surgeon that was there decided to cut me open and thats how I found out.
Since then I have had a few resections but now there may not be enough left for them to do anymore resections. I had an MRI last week and I'm just about to phone and find out what the results are.

At present my medication is:

Pentasa 500mg x 2 daily
Omeprazole 2 in the morning 2 at night
B12 injections every 3 months
Domperidone 10mg (Anti-Sickness) when needed
Folic Acid 1 a day.

Because of taking steroids in the past it has left me with Osteoporosis.
For this I take:

Calcium Tablets
Painkillers
Amitriptylene

A year ago I was admitted in hospital because I had pneumonia and was pit into a coma.
This has left me with peripheral nerve damage which affects my hands and feet.

But most important thing of all is I am still smiling. :ylol:

Hi Lass you are doing things right take care and may your god bless you

Welcome to the forum Fitzy, I had to do a double take at your username haha, I have a very good friend who goes by the name of Fitzy.


So today was my first ever GI appointment... And he has decided to revoke my crohns diagnosis and take me off my medication, then do another calprotectin in 2-3 weeks time when the drug is out of my system. He thinks that rather than Crohns disease, that I may have Endometriosis instead. I have absolutely no idea what to think, he made this decision without doing any tests beforehand, and how can a condition that affects the uterus, cause so many crohns disease symptoms, yet not be crohns? The mouth ulcers, the nausea, the diarrhea, the bloating, the upper abdominal and stomach cramping.. Lower abdo cramps I can understand, but not every other symptom there. I just don't get it. I don't know what to think, but I know that last time I was taken off Pentasa I got worse than I was before I started the meds in the first place.

Has he referred you to anyone to confirm the dx of endometriosis?

No he hasn't yet, he has just decided to take me off my Pentasa and do a calprotectin in 2-3 weeks when the pentasa is out of my system, I got the impression it was a "just for S**ts and giggles" type of thing, he didn't give me a reason for wanting to do it.

It was literally a "well I don't think you have Crohns disease, but I see many young women presented to me like this and they end up being diagnosed with Endometriosis" I was kinda like oh you have got to be joking, don't be throwing random names out at me like that, I know what endometriosis is, and as much as I think I'd prefer to have that over crohns, I would just flat out rather have a confirmed unchanged diagnosis and get on with my life trying to manage whatever I have.

After ringing the GI today, he has told me to start back on the Pentasa, it must have been doing something because I've been off it one week tomorrow and everything has just gotten worse tenfold. I'm lucky if I eat one item of food a day at the moment, just because the pain, nausea and bathroom trips afterwards are not worth it at all.
My fatigue levels have gone sky high even though I'm sleeping better than before, just everything is getting worse.

Hi Holly! I've read you story and find it utterly heart breaking, that you're having to go through this. My Daughter who is 16 has been recently diagnosed, and I have had to really fight to get her all the help she needs, including a psychologist. I wish there was something I could do to help you. But here's a virtual mum hug. :ghug: I really hope things have improved and you are getting the medical care you deserve.

x

Lisamumofmeg said:

Hi Holly! I've read you story and find it utterly heart breaking, that you're having to go through this. My Daughter who is 16 has been recently diagnosed, and I have had to really fight to get her all the help she needs, including a psychologist. I wish there was something I could do to help you. But here's a virtual mum hug. :ghug: I really hope things have improved and you are getting the medical care you deserve.

x

Click to expand...

We are all at the mercey of our GPs I am waiting for a usb on the end of march that will over 35 days from when I spoke to my GP :ghug:

Hi All had a few bad days lots of pain and the trotts as my mother used to say but got all my dates at last .take care all .

Had another appointment today with yet another specialist...

This one told me that she thinks my depression and anxiety are shutting down my body to try and cope with life, and that's where my random weight loss occurs, considering i lose anywhere between 10-25kg in a two week span or less, without vomiting or having diarrhea most of the time.

I'm having a Laparoscopy on May 14th to check for endometriosis as well.


I seriously wish they would stop throwing random crap at me, I wish it would just be diagnosed and solidly diagnosed.

Tomorrow I start taking benefibre, Fish Oil, Anti-Depressants and Vitamin B6.

I was so nervous in my appt today that my nail beds went purple and white and I got asked if I have raynauds disease... I've never been asked that before but no i'm pretty sure it's just my anxiety that does that.

And i have to quit my course... Again.

not coping with this very well at all.

Hi Holly you and I are having some troubls with apps my next is a USB scan on the 18th then a review at the cancer clinic on th 11th April .We need to start looking at our dates for holidays Anne and I .We hope to have 3 weeks in May on Angelsey N Wales .Take care regards george

Hi All .Been a funny day many visits to the loo dont know what to eat and I have a history over 50 years of this crohns thing and will never get it right what I eat one day is OK but the next day it knocks me down .regards to all .george xx

Felt fine most of today but about 20 minutes ago all of a sudden the bathroom trips started and I feel really ill and my abdomen is tight to the touch. I have two navel piercings and one of them has started hurting not long after I started getting sore and nauseous.
Hoping it's just gas or something, but dunno, I've had a whopping great headache all of today.

In completely unrelated news, I found out today that my nana needs Cataract surgery, but doesn't have health insurance because she can't afford it, so now she can't afford to have her surgery either. My dad is going to help pay for it if he has to, but I'm going to start selling my photographs at local horse shows to put a little bit towards it, and sew some things like Girth covers and horse hoods. She needs the surgery, even though she keeps telling us not to worry about it... I won't worry as such, but I will do what I can to contribute towards it and help her out. It's expensive, but it's necessary. She has a cleaning job, cleaning peoples houses and workplaces... She can't do that, or even drive to it if she loses her sight, and she's a stressing type person, so she will stress about it and try to hide it from us... I'm not silly, I can see it happening, I know my nana well enough to know her reactions to these things

Hi Holly .Like you I have had a bad day today did not get out of bed till 4.0pm well for trips to the loo pain in the tummy etc .
But just had a short walk with Ria my old Jack weather is fantastic warm and sunny.oo:

regards george xx

I think I've managed to sleep mine off thankfully, since I have to get up and go to town now.
Oh cool I used to have a dog, she was a black Labrador, but she passed away almost a year ago now. I miss having a dog around the place, it just seems empty.