06-08-2010, 01:36 PM   #1
Join Date: Jun 2010
My Story

Hi there,
My name's Rhys. I am 15 years old.
I've just been diagnosed with Crohn's disease.
This is my story.
For the past 4 months, I've been suffering weird symptoms.
It started off with fatigue. I suffered for about a month, coming in from school, crashing on the sofa and sleeping for hours. I booked myself a GP appointment.
When I got to the GP's, I explained the fatigue. She decided to do a few blood tests on me. It showed that I was slightly anaemic (I had an Hb of 11.6). She ordered a ferritin test, to see if it was iron deficiency and a coeliacs disease test. However, she prescribed ferrous fumarate anyway. I started them after having the ferritin test.
I then gave my GP a call about a week after that round of bloods. She explained that my ferritin was normal, and therefore she said there was no point taking the iron pills any more. I was also negative for coeliac. I had some more bloods done to see if it was thalassemia trait. My dad said this was unlikely, due to me not having any Mediterranean in me :P Unsurprisingly, these tests came back showing no thalassemia.
I suppose I should mention here that I am just over 155cm, and at this time in my tale, I weighed about 32kg. At the beginning of all this, I was about 35.5kg. I'd been concerned about my weight and height for a while, but now I was losing it, I was very concerned. My GP should have noticed this when she first weighed me at the beginning. I am under the 0.4th centile on the chart for my weight and under the 2nd for my height. I've also had "funny" bowels all my life. On and off diarrhoea and the like, but we put it down to undiagnosed IBS.
Anyway, in between the thalassemia blood test and my next appointment to discuss it, I started having weird on and off swelling, painful knees. My dad, a doctor, started putting things together. This latest symptom made him consider if it was some form of inflammatory bowel disease. I'd also been having random, mild abdominal pains.
I brought all this up at the next GP appointment. She didn't seem massively concerned. She said "If we go looking, we'd probably find something. I just want to keep an eye, repeat bloods in about a month. Leave it at that."
I then put forward the theory that it could be IBD. She said "Well, it's very unlikely. That's something we might look at later if you still aren't getting better." I pushed for a referral to a gastroenterologist. She said she'd discuss it with the other GP's.
About a week later, Thursday 13th May, I started having an extreme bout of abdominal pain. It didn't go away. At half past 12 in the morning of Friday 14th, Dad took me down to Paeds A&E.
I saw an out-of-hours GP. She wasn't concerned at all. She pressed where my appendix is and said they needed to rule out appendicitis, but after that I could go home. I pushed to be seen by another doctor. Dad and I both said I'd been to the GP loads recently. She tried contacting the Paediatric Surgical SHO, but gave up after 1 try. She sent me back to Paeds A&E to wait for the SHO to come and see me. When the SHO arrived, I went into a booth with a bed, where she felt my abdomen. Dad then explained about the GP's and what his concerns were. She agreed that I needed to see a Paeds gastroenterologist. I had EMLA cream put on and full blood work done. They used butterfly needles and missed where they'd put the EMLA. This just added to the distress. I then had a yellow Venflon put in.
I was sent up to the Paediatric surgical ward, Paeds South, just in case it was a surgical problem. They were sure it wasn't, but it was a just in case measure.
Throughout the day, I was seen by a few doctors who felt my stomach and went on to do their thing. I was told I would have an ultrasound scan done on my abdomen. After waiting for a while, I was taken down to the ultrasound room. It showed thickening of the terminal ileum. I was taken back up to the ward and waited. Finally, a doctor came and talked with us about what was going on. He went over the ultrasound results again and said that he was going to have me moved to the medical ward.
After a while, I was moved up to Land Ward. I was weighed and measured. One of the nurses told me that after speaking with the dietician over the phone, I should be put on nutritional supplementation, Ensure Plus. I then waited for the paediatric gastroenterologist. A couple of hours later, one of the team came to see me. He explained that they were considering that it could be Crohn's disease. He was 95% sure. He told me not to worry about the Ensure Plus, and instead I would be put on Modulen IBD. He explained that I'd have to have more investigations done. I was then given open access to the ward over the weekend, a couple of cans of Modulen IBD and discharged.
The next few days was just me taking it easy and trying (and failing) to drink Modulen.
Monday, I went back to the hospital for an appointment with the paediatric GE and the dietician. My GE arranged for me to have a white cell scan on that Wednesday. The dietician gave me an official Nestle Flavour Pot, which cancelled out the original Modulen flavour! Brilliant! I could now drink it.
Wednesday came along and the white cell scan showed up the same area as the ultrasound did. My GE called me to a room to have a word with him. He told me he needed to do a colonoscopy on me. He discussed the two options: sedation or general anaesthetic. I chose GA, even though it meant waiting another week. He also booked a barium meal and follow through, for the following Monday.
Monday came along and I had the barium meal and follow through, yet again showing up the same area. The GA again called me to a room to discuss things with him. He told me he wanted me to have a bone age scan, because of my height. He also asked me to consider the two treatment options: Modulen-only diet or steroids. He seemed to prefer the idea of steroids, because they are more likely to keep me better for longer. He also talked about putting me on azathioprine.
Tuesday, I decided to try and go back to school for the day. It was good to see my friends again after weeks away. However, by midday I wasn't feeling very well and went home.
I started the bowel prep. on the Wednesday. It wasn't at all bad on Wednesday, because I was still allowed bacon! Thursday was difficult though, and I now hate Jelly Babies with a passion. They were the only food I was allowed. Thankfully, I was still allowed Coke and Lucozade though, which stopped me from passing out.
Friday morning and I got up bright and early, dreaming of food. Ahhh... the food I would be allowed when I woke up from the colonoscopy... I had it all planned out. My GE came and saw me before starting the list. He quickly ran through what would hopefully happen. I told him I'd chosen the steroids over Modulen. He agreed it was the better choice.
I waited till about 12pm, because I was last on the list. I had a Venflon put in and the propofol too. I quickly drifted off. Waking up was easier than my previous GA experience, due to them not drugging me up with fentanyl and morphine :P
I was back to my normal self in about an hour. I was dehydrated though, and on a fast rehydrating IV fluids. They were being pumped through me at 250ml an hour. I tried to sleep through this, because it was rather sore.
My GE came to see me after speaking to a couple of his other patients. He told me that he'd only been able to do the colonoscopy and not the endoscopy that he'd also planned. This is because what should've been a 20 minute procedure turned into a 2 hour adventure through my colon. He had to get the other paediatric GE in to help him. I have a very bent up colon, with lots of twists and turns. He decided to keep me in overnight for observation. I had my first dose of prednisolone, which tasted disgusting. I was told I would have to be put on ciprofloxacin too, because of a septic spot on my anus. Finally, I was being put on ranitidine. I asked for my Venflon to be taked out, because it was very sore. I was then moved to the surgical ward, Paeds South.
In the morning of Saturday, I'd started having minor abdominal pain. Exactly what my doctor had been hoping I wouldn't. I was told that I was now nil-by-mouth. After about an hour or so, I went down to A&E's Radiology department and had an abdominal x-ray. Thankfully, it showed there was no loose air. I was told that I needed a new Venflon put in and bloods taken. I was then told I could eat again, because of the x-ray results. I was also moved to my own cubicle, which was good. My GE came in and said that he was going to put me on IV hydrocortisone and IV antibiotics. I was kept in for Saturday night too. Finally, on Sunday, I was allowed home. I'm currently on 40mg prednisolone and 150mg ranitidine twice daily. I finished the ciprofloxacin course a few days ago.
I've now finished half-term holiday. I went back to school yesterday, for half a day. I managed a full day today. I have another appointment with my GE next Tuesday.
During all this, I would've been doing some modular GCSE exams, but they've been put off. I'm going to do them next year.
I've noticed that the prednisolone is definitely affecting me. The appetite increasing "side-effect" is very much welcome, along with the rapid weight gain. This morning, I weighed 37.1kg. I've set myself a target of weighing 50kg by October 22nd, my birthday. I think that should be easy! I'm also still on the Modulen, but I have free reign over how much I have a day. I'm managing a litre of it, easily. I mean, it's basically a free 1000 calories.
Thank you for reading! Hope I've not bored you all to death.
- Rhys
06-08-2010, 02:39 PM   #2
Senior Member
MapleLeafGirl's Avatar
Join Date: Apr 2010
Location: Hamilton, Ontario
Welcome to the forum, that's quite the story!

Diagnosed: August 2006
Current Meds: Imuran (125 mg), Budesonide (9 mg)
06-08-2010, 02:40 PM   #3
Crohn's 35
Inactive Account
Join Date: Oct 2009
Hi Rhys, welcome! Sorry you went through quite a bit but alot of people sure could learn from you and your fight and not take no for answer. Sometimes we don't listen to our bodies and doctors make all the decisions not realizing we are not alike with this disease. Keeping your nutrition up is important seeing as you are so young and because you are on steriods and the ranitidine, you must find out how much calcium and Vitamin D3 you should have as a supplement as steroids and ranitidine can rob your body of calcium. That is very important. Glad you found us , lots of people here to help you along the way. Keep us updated. Hugs.
06-08-2010, 02:57 PM   #4
Join Date: Jun 2010
Thank you for your warm welcome!
I hope I can become a close member of this community
06-08-2010, 04:04 PM   #5
Astra's Avatar
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

My Support Groups:
Hi Rhys
and welcome fellow Brit!

Yes quite a story and you've wrote it so perfect! Sorry you're a Crohnie tho! lots of support here, lots of laughs too!
some tips on Pred - take it very early in the morning, about 6am, cos one of the worse symptoms with Pred is insomnia, and don't worry about the jitters and speedy whizzy feeling, that will pass, don't let it frighten you. Yes, you will gain some weight too with the 'Pred munchies' lol
good luck Rhys, any questions, fire away, Pred experts here!
lotsa luv
Joan xxx


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery


No-one should make you feel inferior without your consent!

06-08-2010, 05:18 PM   #6
Join Date: Jun 2010
Ah right.
I've been taking it at about 7:30 - 8:00am, cause that's the time I get downstairs after waking up :P
The speedy whizzy feeling kicks in early in the morning, and it feels like I've killed the fatigue. Then at lunchtime, I crash and the fatigue cripples me.
I managed a full day back to school today though.
06-08-2010, 11:11 PM   #7
Senior Member
belle1999's Avatar
Join Date: Feb 2010
Welcome Rhys! I hope that each day gets better and better for you. It sounds like you have had a rough time of it already.
Diagnosed December 30, 2009
Current Meds: Humira, iron, vitamin d, vitamin c, b12, multivitamin
Also have anemia and anxiety disorder


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