04-23-2014, 12:08 PM   #1
Join Date: Apr 2014
Location: United Kingdom
My story.


It is a bit weird for me to start talking about what I have gone through as normally I just hold it in. But after almost 5 years I decided that I wanted to join a forum because we all need some support and advice and maybe even seeing that your problems are real and just as important even though they are not visible.

So here we go...

My name is Claudia, I am 25 years old and I am originally from the Netherlands (been living in the UK for 2 years now, fell in love with an English guy and stuffs). When I began my Crohn's journey I was in my last year of MBO (I guess it's like college). I started having severe stumach pains and I would fall on the floor and just scream and cry. I woke up my parents plenty of times. during the night. Went back and forth to the gp and hospital. Ran to the toilet about 15 times a day. On my internship, which was in a store, I would throw my college the keys of the cashregisters and run...(it kept me fit alright...) finally after months of tests and gp/hospital visits I got my label. I was glad, it was something, it could get resolved... Ohhhh boy... After trying loads of different meds, graduating college while being sick like a dog, gaining 25 kilo in 4,5 months because my brilliant doctor put me on 20mg of prednison I got so much more then a label. My body was scarred all over from the massive weightgain of the prednison, I was litterly drooling when thinking about meat... Oh my god.. (someone else had that?) I started to call myself a little zebra to try to lighten the mood. Finally the pain was alot less and I got put on purinethol, so then even more bloodtests came... I have horrible veins, they always have to try to get it in a vein and I would always end up with big bruises on my arms. I was fine finally after over a year. I went to university in the mean time, failed.. But I was doing better.

I took a year of from school and went to work, I still had occasional pain and I had no idea why. The blood result were always fine. After the year of work I tried school again and failed again, I just can't handle the stress anymore and mid year I moved up to England to live with my boyfriend. The transaction with hospitals was horrible and slow. I was used Dutch doctors, they are fast because you pay... Here they are alot slower with appointments and such... (no offence).

I moved a few times as my boyfriend finished university and am now living in Stoke. I still go to a hospital almost 2 hours away because I am in the middle of all kinds of tests... (the endoscopy, mri, blood, ct, xrays) this has been going since last october after a long wait to even get an appointment at the hospital. (at that time I was still getting weird pain attacks every few weeks at the same side my first infection was, bottom left. Oh and almost forgot I also need b12 shots every so often because of where the infection was) so since last october something happend. Those pain attacks... It came one day again in october and never went. I had to lay on bed and not move for up to 6 weeks before I could do things again very slowly. I took 100mg of tramadol 4 times a day, they gave me liquid morfine (hate it, made my heart and breathing go funny so I stick with tramadol).

At this very momemt I still battle with that pain. I can't do anything or it comes. It sometimes goes away for a week. No one can touch my stumach, i had to recover from the doctors appointment for 3 weeks. Then went away... Now last week I lifted a grocery crate... Now I am resting again... My next appointment with the hospital is 16th of may to discuss if they find anything on the ct scan and if we should do an investigative surgery. In mean time my white bloodcells have been going down and I have been lowered a few times on my purinethol so it was all normal again. I have no infections or anything... They also always ask me if I have a fever... I rarely have em even when I had my infections...(anyone else had that).

I probably left out quite a bit because it's difficult to write everything down... So much happend.

I just wish this pain would go away, I can't work, I can't walk anywhere.. I can't live at the moment and I am starting to get depressed. My outside world doesn't get it at all.
My boyfriend tries but he will never truely know the hellish pain I am in.

I am sorry if I sound stupid :s

Kind regards.
04-23-2014, 01:05 PM   #2
Allison M
Senior Member
I'm glad you found your way here. I'm still new and I have learned so much, AND found tremendous support. Hang in there. I understand how rough it is. This is a BUNCH of people that understand. Hugs. Allison
Diagnosed December 2013
Partial gastrectomy Jan 2012
Cholecystectomy June 2012
Rectal Prolapse Feb 2013 with repair and removal
Pancolitis multiple times before diagnosis
Stricture and resection after prolapse May 2013
Current Meds: Prednisone, probiotics, 2 b/p meds, MV, Zoloft
Past meds: Prednisone, Flagyll and antibiotics (?)

04-23-2014, 03:55 PM   #3
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:

A massive welcome to the group!

I'm really sorry to hear of how you have been stuggling, and I'm really hoping that your recent tests will shed some light on your situation. Have you had a colonoscopy? If not, that may be the next step.

Unfortunately, the NHS can seem very slow when compared with other systems, it's a highly pressurized system, with its funding constantly being put under immense strain. Unfortunately there are people that over use the system, going to the hospital when really they don't need to (for simple colds or minor injuries that can be treated by a GP or even at home), which clogs up A+Es and vital beds, and causes longer waiting lists for others. Also, they struggle to keep hospitals running because of the cost, and the government is currently just making the situation worse. I understand your frustration, but many NHS staff are doing the best that they can to keep the system flowing and look after us. Fundamentally it is still a great system, and I hope that it proves itself to you soon.

You don't sound stupid, I totally understand where you are coming from, we all do. I felt like my whole life had crashed around me when I had to leave university because of my illness, and I still feel disconnected from the life a 'normal' 21 year old would be living.

It is possible to get back to normality, it takes time and a lot of fiddling around to get the correct diagnosis and the best treatment for you personally, but it is achievable. After over a year of not being able to do anything much at all, I personally have a place to start a nursing degree in september. So it is possible to get back to where you want to be.

You never need to apologize for how you feel here. While it is hard for people without these illnesses to understand the pain we deal with and the emotional effects it can have on us, but here, we all understand. Its okay to vent as much as you need here, you are amoungst friends.

coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
04-23-2014, 04:44 PM   #4
Join Date: Apr 2014
Location: United Kingdom
Thank you so much for the responses. It makes me feel good to see that what I have been feeling is normal and that there are others (you guys).

I have had the colonoscopy (I used endoscopy for it, my bad ) several times. I hate them so much. I have had it recently here and I asked to be put in a light sleep... Because of the pain I have in that left corner it has always been a hellish experience. During the inflamation and also after. I had it done I believe last january (could have been december) and they gave me the maxixum amount of painkillers, they kept upping the dosis while performimg the procedure... Even though I told them before to pleeeaaaassseee put me to sleep, even then I wake up and they have to give me more. I really have a fear for the colonoscopy because they always hurt so much and quite traumatising. They have had to abored early this time again because it was unbearable. (I think I might have frightenend some patients in the waiting room...oops)

They did not find anything too weird. Just a few irritated spots. What I think is that it might be on the outside of my intestine.

It doesn't hurt too much on direct contact it but a few seconds later and then doesn't go for days (even weeks, depends on the amount it has been touched). Also just using muscles can annoy it.

About the NHS: I really love the staff here, they are very friendly and make you feel at ease. Can't blame them for the wait I just wouldn't mind having to pay for a faster service as I am used to it... Though not having to pay a monthly bill is quite nice too

I am very happy to hear that you are being able to take up another course and can study again. It is my goal in the end to do the same. I wish you the best of luck.

Thank you again. I really appreciate the responses.

04-23-2014, 05:00 PM   #5
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
Okay, Well in that case an endoscopy may be next.. I too have had a horrible experience with colonoscopies, I don't think I was properly sedated for mine.

I'm glad you like the staff at least . I can understand where you are coming from. Sadly, if the current governmental stays in power we might end up having to pay.. Which I know a lot of people wouldn't mind, but personally I would really struggle to afford treatment. As it is, I will have to try and keep my current GP in Wales when I come to England to study, otherwise I won't afford my medication, including vital asthma inhalers.

Thankyou . I just wanted to show you that there is hope for some sort of normality.

Please let us know if you have any worries or questions.

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