19 years old and 11 years since diagnosis! Lots to tell

[vickyhunter]

Hi everyone I'm 19 years old and I have Crohn's.
I was ill with it since being about 5 but was diagnosed at the age of 7 officially.
It's been a rocky ride to say the least and I'd like to tell you all my experiences as I know this is such a confusing illness and at times it seems like even the doctors don't know what to do!
So, I'll start from the beginning....
I had the usual symptoms: weight loss, vomiting, diarrhoea, blood etc. When my mum first took me to the doctors they simply turned me away and said I would get over it (they didn't suspect Crohn's as it is very rare in children as young as I was) but it was due to the perseverance of my mum that I was finally referred to a children's hospital and given investigatory surgery and Crohns was finally diagnosed.

Although, this was by no means the end of it. I was put on Mezallazine and experienced a massive "flare up" at age 8. I missed almost an entire year of school and was very under weight and anaemic. All I remember for that period of life is being in bed all day, not eating, being sick and looking in the toilet to find nothing but pools of blood. It was awful.

Then, came the experiments. I was put on a liquid diet for around 6 months, the dietician didn't seem to understand that these drinks are not the food of choice for someone who can't keep anything down never mind creamy, fattening milkshake style beverage. I was meant to drink six of them a day but rarely managed more than two. This failed, not because I was non-compliant, but because it did nothing to reduce the inflammation and as I was inflamed, I was not absorbing any nutrients anyway, liquid diet or solid diet, so it caused distress all round and actually made my inflammation worse according to blood tests.

So, the steroids began. I must admit, I have tried to tell people how amazing it feels to go from feeling like death to being on top of the world the next day, but I literally can't describe it. Steroids are truly magnificent. However, they made me eat like a horse which made me huge haha! But honestly, at the time, I didn't care, I was well and that's all that mattered. I was on 40mg a day for around 3 months and was then weaned off over the course of another 3 months.

I managed to over come my flare up after this, but not for long, and I had another relapse a year or so later. This one was particularly bad, and again missed a lot of school. Again, lost lots of weight, went very anaemic, spent my life in bed being sick and not eating. I had a feeding tube this time, despite my mum protesting about how rubbish the liquid diets were. One of the most traumatic experiences of my life was when I was being sick and my feeding tube came up out of my mouth and I had to pull it out of my nose. I still feel horrible to this day thinking about it! I was put on steroids again to help me get some weight on and I stayed on them for about a year, and after that managed to stay well on a high-ish dose of pentasa.

It was when I was around 13 that the real breakthrough came. I was put onto azathioprine, an immunosuppresent. I have gone 6 years without any activity (until now, which I will explain later). It was truly wonderful, to be able to go through high school feeling fit and healthy Although, I did catch a lot of little illness because of reduced immunity. I got glandular fever and tonsilitis so they had to reduce my dose to allow me to get better, but in illness terms, it was nothing compared to the agony of Crohn's.

The only thing with Azathiprine is that you need regular blood tests which can be annoying. I had them every week for three months, then every month for 6 months and now it is every three months, for life, I suppose. Scary thought.

And now, at uni, I am currently controlling a flare up. It began with a few mild stomach pains and a bit of blood but quickly escalated into loss of appetite, extreme lethargy, lots of blood and diarrhoea and crippling stomach pain. So much so I couldn't go out without fear of collapsing at one point!


But, I caught it early and I am currently feeling amazing on steroids and my aizathioprine has been put up to reduce the inflammation. I'm on steroids to allow me to mend while the aizathioprine takes effect (as increasing the dosage takes around a month or two for your body to process.)

I've read a lot of stories on this forum about people being turned away by their doctors and mis diagnosis of IBS.

IBS IS NOTHING LIKE CROHN'S DISEASE.

Make sure you make yourself head and please please please don't settle for the first opinion. If you know something is wrong then don't give up. If you have any blood, go to the doctors, as this is a huge indicator of crohn's/ulcerative colitis.

If you feel like you're in a rut medication wise I whole hartedly suggest azathioprine. Although I'm not too well at the moment, my illness was controlled for six years! It was amazing. A wonder drug. Pressure you're doctors!

I hope you're all well and if you've read all of this, you're a tropper haha!

Take care
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[Crohn's 35]

Hi Vicky welcome :bigwave: Having this disease at any age isn't nice but at 5? Wow, all I can say is yes, you have had a rocky ride. Most of us have a love/hate for Prednisone and most people don't realize it is great at the time but too much of Pred can eat your calcium and young people don't think they need alot of calcium and Vitamin D3 to replace the calcium. Have you ever had surgery? Have you tried any of the biologics? They are great for most and not such a pain. Yes there are risks but every drug does. I have a daughter in University and she is crazy with burn out , that is stress so you are in the stress period of your youth. Stress can really wreak havoc. I assume you are in the Uk? Uk say Mum, we say mom lol. Welcome aboard so glad you made it here!

 

[vickyhunter]

Thank you for the reply, it's nice to hear from someone
and yes I'm from the UK haha , Manchester actually
i've never needed surgery, I have Crohn's in my ilium and small intestine and as far as I know/have been told by doctors, I won't need surgery or if I do need surgery it will be in the far future. The most I've had is investigatory surgery like endoscopy.
My mum keeps telling me to have lots of calcium too! I've been taking multi vitamins every day for years anyway and luckily I love milk and cheese etc
It's odd my Crohn's is totally random, it's not triggered by stress at all. I've had really stressed out times in life and my crohn's has been fine. I've actually been really happy/relaxed the past few months and yet I get a flare up. weird!
It's not been nice being away from my family though and having to do everything for myself and be ill. But I'm okay now on my steroids and I won't be on them for too much longer and my increased dose of azathioprine will kick in in a month. I think the key to it was that I've had two huge flare ups in my life with clearly defined stages so when I started to get ill I knew exactly what was coming so I told the doctors hey I've had this for 11 years I know how bad this can get, now do something, before I get REALLY ill. Doctors are so hesitant as there isn't much understanding of Inflammatory bowel diseases in my experience, every doctor has his/her own spin on it. It's good to go in andd kind of..tell them aha

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[Ian]

Welcome!

I was 19 when I was diagnosed. Can't believe you're 19 NOW and have had the disease for nearly 15 years! Glad to hear you're doing okay It's great that Aza is treating you so well. I'm on 6MP (very similar) but it only maintained my remission for a few months. Your results are impressive!

I developed IBD when I started University at Exeter. Had a couple of flares over the years and have since gone on to do another course at Bournemouth where I've had flare each year - it sucks; I'm a perpetual student but clearly the all-nighters and the drinking and the cheesey chips and the stressing over people messing up the kitchen straight after I've cleaned it don't agree with my gut I might not even graduate with my year if things don't turn around, meant to finish in June and I'm currently way behind and possibly facing surgery... really hope you manage to have a fantastic time at Uni without paying for it through the arsehole! (and I'm not talking fees!!!). Where are you studying btw?

I've found the opposite with my GP at Uni - because she knows nothing about Crohn's (I always have to wait an extra 20 minutes for my appointment and find her with all my notes up and book of medications open on her desk haha), she hands out Pred like its going out of fashion. In fact I have it on repeat prescription so I don't even have to make appointments anymore! Obv she gets letters etc from my GI, she's not being irresponsible - she just knows we know more than she does and the most helpful thing is to let us get on with it.

 

[vickyhunter]

Thanks for the post Ian
I'm studying at Warwick, how's Bournemouth?
Never heard of 6MP haha just had to look it up, seems very similar though!
And yeah it was odd having it so young, there was no support groups in place as there are very few seven year olds diagnosed with this kind of thing so I was just so lucky to have support from my family. I was the youngest person to be diagnosed with Cohn's at my GP surgery haha, claim to fame!
and I didn't mean it to come off like my GP at uni knows a lot about crohn's, he doesn't. He pretty much knew that my azathioprine needed to go up and that steroids was the standard action. But because I've had it for so long and have had so many different treatments and researched it so much I practically have as much knowledge as them! I've had about 7 different consultants over the years though and I have only been impressed with the way in which one handled me.
Hope you're well and don't stress too much about dirty kitchens, they are gross though
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[Ian]

Cool, did you notice from I'm from Warwick? Here right now in fact, had to jack Bournemouth in for the time being 'cause of this flare. When I'm well and actually THERE I love it. How're you finding Uni here? I guess technically you're in Coventry! I used the Warwick Uni library once and discovered the campus is basically in the middle of nowhere! Do you live in halls? Where do you venture for nights out? Cov? Birmingham? I go out in Leamington sometimes when I'm home but it's pretty rubbish Bet it doesn't compare to Manc at all!

No one in my family has IBD but they're really supportive, my mum is doing EVERYTHING for me right now, I feel quite bad! She works in a school and is on half term holiday but spending all her time at home watching TV with me lol. Seen WAY too much Homes Under The Hammer already...

It's good you have no problems with your Uni GP, managing your illness when you live in 2 places can be hard enough as it is, although it sounds like you haven't run into any problems yet. Hope it stays that way! x

 

[vickyhunter]

oh no I hope you get back to uni soon!
And yeah I live on campus! It's lovely here but yeah MUCH quieter than manchester haha. I'm living in leamington next year actually.
Oh god, I think I know every line of every episode of murder she wrote and diagnosis murder from when I was ill when I was younger. Telly = saviour of crohn's sufferer haha.
Are you generally someone who tells people about your illness or do you keep it on the down low? Only my family, boyfriend and best friend (and this forum obv) know that I have Crohn's. It was too confusing to explain to people as a child so I just never talk about it haha, I'm getting to love this forum now though, it's a way of talking about it but not talking about it
Hope you're okay
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[Ian]

Me too! I hate missing everything and really don't want to be completing my dissertation over the summer after everyone else has finished
Where in Leam are you gonna be living? Hope you've found a nice group of people to share with! Mine are awesome, last year they took the train from Bournemouth to visit me in Warwick hospital for 2 hours and then took the train straight back! All the nurses kept going on about it lol. I miss them! (don't miss the mess though lol).

Haha classic daytime TV. Do you watch 'Doctors' too? I did some work on that in summer as it's produced in Birmingham, got my name on the credits of 6 episodes That’s my (lame) claim to fame lol.

Yeah I'm pretty open and blunt about my illness now. When I first developed symptoms and didn't know what was going on, I confided in family and a couple of friends and kept it to that. But once I was forced to go into fine detail about everything (especially bowel movements lol) with a GP, a GI and a GI nurse I got used to talking about it. Had to tell tutors and admin staff at Uni so I could get extensions for assignments when I was unwell, had to come clean to various groups of housemates (particularly if there was only one toilet!), had to explain why I got admitted to hospital last year - ALL my friends know now, my closer friend's parents know, friends of my mum, the postman probably... I really don't mind, it makes life a lot easier. Recently I had to yell for my housemate to 'get out of the f*****g shower!' so I could get in the bathroom asap - he obliged, no questions asked haha. But yeah the forum is great, particularly if you're not comfortable talking about it with many people face to face

Thanks, hope you're okay too and managing your flare with no problems. Do you get moon-face on the 'roids? If so how do you explain that to people who don't know you have CD? That's another reason I came clean; didn't want people thinking it was too many pies x

 

[freespirit]

Hi Vicky, Welcome, I'm quite new here and found it quite beneficial, even just to know that your not alone is a nice thought. You sound like you have had it tough!!!

When you say about being open and talking about it? I find it difficult, more so because i get soooooooo fed up of trying to explain it to people as no one knows what it is.

I am also sick of watching diagnosis murder, not sure what is worse, watching that or Jeremy Kyle lol

Hope you find this site good

Emma xx

 

[vickyhunter]

hey Free spirit yeah I find it so difficult too, most of the time I just cba explaining it to people because it's difficult to explain haha. I've been ill recently and I didn't tell my flat mates I had Crohn's I just said I felt really ill...
It's odd, I think in a way I don't want anyone to know I have an illnesss because unless I'm really ill you can't tell, and I don't want people thinking I'm "ill" and feeling sorry for me :/ I just want to appear normal and healthy and I don't want other people to know. Especially at this age!

And Ian, as for the "moon face", I'm very petite as it is (5"1, around 7.5 stone) and as a 19 year old girl I am controlling the hunger of steroids nicely with my figure in mind haha! I've been on 30mg for 2 weeks now and haven't put on any weight and have kept a non-moon face. Have been eating healthily and drinking literally tons of water to prevent water retention!

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[freespirit]

Yeah same as me, i mean i am 26, but seems so young to be telling someone i have a disease, it just sounds so wrong. I know totally what you mean about CBA explaning it to people, its like the same old explanation over and over and they still have no idea what ya on about half the time lol

Hope you feel better soon xx

 

[vickyhunter]

haha yeah! Plus I don't want to sound like I'm whining and getting my little violins out! I know they would never think that but that's how I think they would feel.
I've said earlier in this thread that my family, best friend and boyfriend know and I don't think I'll tell anyone else until it's unavoidable . While I'm relatively healthy I like putting Crohn's to the back of my mind!

Thank you and the same to you, hope you're well
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[Ian]

Glad to hear you're managing on the Pred so well! I can fight the hunger too; I do tend to get the moon-face though, no avoiding it! And spots on my forehead but my hair hides them Does drinking a lot of water help then? I might try that, although I drink a lot anyway. I also got a Wii fit for xmas which I'm sure will come in handy!

Yeah I don't like bringing up my illness unless I have to, I hate pity! - unfortunately my most recent flares have been bad ones so I've had to inform a lot of people. I hate having to request extensions etc - I don't WANT to be bunking off and doing all my work after everyone else has handed in, it's no fun! But just make sure if you ever hit a flare that's harder to handle than your previous ones, that you don't suffer in silence. Hopefully it will never come to that though

 

[vickyhunter]

Oh god, I've had awful flareups in the past, like hospital for a month and stuff and but I was in school then so didn't really have to explain so much, my mum just told the teachers what was up and they accepted it haha, my classmates didn't know what was wrong I made it kind of a taboo topic haha!
I would hate to have a severe flareup at uni hope it doesn't happen! and yeah I hate the thought that people would think it was an excuse to chill out on work, like you'd want to have crohn's in exchange for extensions! This is why I find it so hard to explain to/tell people, it's hard to people to imagine the pain if they think a Stomach ache is a "cramp" :| when its actually like agony!

Well on the moon face front, i was reading up on what steroids actually do, and they increase your blood sugar levels and almost mimic diabesity in this way. I did bio Alevel (and chemistry now at degree) so I'm kind of interested in stuff like this haha. If you have high blood glucose levels your body retains water pretty much, so I figure, give your body loads of water and you won't need to retain = sort of defeater of the moon face
Allthough, that being said I'll wake up with a giant puffy face tomorrow haha! I hope not!
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[Ian]

Yeah it sucks when people don't understand. Like this time I feel quite well but I'm actually technically in my worst flare because I'm basically on all the drugs and they don't seem to be doing much... my friend just came round this eve, knowing I've been home for over a week but not socialising. I don't look sick (I don't even really FEEL sick tbh) so it was only after I explained how and why I might need surgery soon that she was like 'oh, I didn't realise it was that bad...'. I think now she knows why I wasn't in the mood to hang out over the weekend

That's a good theory on the water retention, can't hurt! Although I haven't really got moon face yet and I've been on 40mg for 2 1/2 weeks - maybe it's because I've also lost some weight during this flare so it doesn't show up so much. Haven't had my usual outbreak of spots yet either, I'm sure they're not far off though! My fingers are crossed for both of us that we don't end up with hamster cheeks

 

[joejohn]

Wow! I can't believe how much I can relate to your story right now. I have had symptoms of crohn's disease since I was 4 and wasn't officially diagnosed until I was 8!

I have a very similar experience starting with a crazy amount of supplements (iron, calcium, etc.) and then came the steroids (prednisone). Except I was lucky in the fact that I didn't gain a single pound from this - except for a chubby face! I wish I did however, because I have been underweight my entire life because of this disease.

Then came remicade for me. It was relatively new at the time (I was 10 when I started it) and it wasn't fully approved in Canada but my doctor had all the confidence in it. It was the best thing that happened to me - I felt so unbelievably well when I started on remicade. However flarups became regular after about 5 years and then I had other complications including fistulas and abcesses.

When I was 17, after trying humira and azathioprine without any results, I had undergone an operation for a "temporary" ileostomy. I put quotations around that not because it isn't tempory but because after 3 years I still am with an ileostomy. The disease is now active and I am currently starting prednisone again.

Anyway, I guess this is a combination of my "welcome speech" to the forum and saying hey to someone I can relate to.

 

[Astra]

Hi Vicky
and welcome fellow Brit

Not so far from me, hey?
I lurve Madchester!
Enjoy the forum!
Lotsa luv
Joan xxx

 

[Ian]

I'm noticing the impact of the Pred on my appearence now... (hope you're still not!), I'm not gaining weight but I think I'm losing muscle from not being very active and gaining fat/water, so my weight is staying the same but I'm looking chubbier lol. Oh well

I'm watching my calorie intake anyway, even though it probably won't help me, and testing your water theory - I'm now peeing like a racehorse! Lol. Hope you're feeling better now? Have you started tapering the Pred yet?

 

[webbica]

HI Vicky, I'm a newbie here too and the forum is great. It seems weird that you have so much experience with your illness at the age I was first diagnosed ! I do agree with the others that it is important to understand how the different meds work for or against you and we all have to be strong enough to stand up to the medical profession if we think they are wrong or ask for the second opinion. Take care of yourself Carol x