Just been diagnosed with Crohns after a year of fighting for a diagnosis

[tonisturrs]

I'm 22 years old, and around August last year I fell very ill with vomiting, diarrhea and severe abdo pain. At first I assumed it was just a virus, but after 5 days of agony I was made to go into A&E, where they kept me in for 6 days. Long story short, I had several tests and the CT scan showed I was likely to have Crohn's, but they discharged me with a diagnosis of Infective Colitis caused by Campylobacter.

I was in agony for weeks and weeks, seriously constipated with bouts of diarrhea and knew something wasn't right but none of my doctors believed me. In October I went back to my GP with the same symptoms and they took a stool sample - I had norovirus. After this, again I continued to feel incredibly ill, but was so disheartened by doctors refusing to take me seriously, which really seemed to be because of my age.

In January I was admitted to hospital once again with the same symptoms, and they decided they were now definitely looking for Crohn's - I finally felt like I was getting somewhere, until they discharged me with norovirus again.

I managed to convince my consultant to send me for tests doing, although he was reluctant as he felt "my body was just taking a while to recover". About 3 weeks ago I had a colonoscopy and gastroscopy. Last Sunday I was rushed into hospital with severe pain across my stomach and chest, which they thought could have been a blockage, or gall stones.

On Tuesday I was finally diagnosed with Crohn's disease and received my final grades for my University Degree, and I got a terrible grade as a result of being so ill for the past year. Although it's horrible to find out I have a lifelong illness, finding out what has been wrong with me all this time and beginning to get treatment for it has proven to be a huge relief.

I'm currently taking entocort, and I will be meeting with the IBD team soon to discuss immunosuppressants. There is currently a concern that I won't be allowed to take them though, as 4 years ago I had a malignant melanoma, so I am already at a heightened risk of skin cancer, and of course immunosuppressants increase that risk too. This is all to find out in due course however, and right now I am just so grateful to have a diagnosis.

Sorry for the incredibly long post, but I think I needed to vent a little!
x

 

[Stardust_Fiddle]

Hi, Toni! So sorry to hear about your fight for a diagnosis. I have been through the same struggle since January 2012, and it really stinks having to validate yourself. Mine actually started with vision problems, which I still have, then progressed to terrible intestinal pain. I had to go through several doctors and tons of tests, and even then the last doctor didn’t believe there was anything wrong. I was finally referred to an IBD specialist, though, and so far he has been great. I started Entocort and Pentasa in April but it hasn’t worked and my symptoms are getting worse, but my Crohn’s is considered severe. I’m waiting to have another push enteroscopy in late August (soonest I could get it scheduled) because the doctor I had before didn't do it right when I had it done the first time, then will be starting Humira or Remicade. I just found out all of my immunoglobulin levels are low, though, so I’m waiting to hear from my doctor to find out what’s going on there. I’m going to try to get them to act sooner though because I’m sick of the pain and symptoms and am having flares every two days or so. I hope that you find a treatment plan that works for you very soon and are able to get back to your life! :smile:

 

[alex_chris]

Hey there and welcome to the forum,

I am sorry that it took so long for you to get diagnosed, but you're absolutely right, now that you know that it definitely is Crohn's means you can get the right treatment and can get better.

I see your point that you are concerned about skin cancer with your history of a malignant melanoma and immunosuppressives (aza and 6mp) increasing the chance of skin cancer, but if you look at studies that increase isn't really that significant. At the end, the consequence of knowing that aza and 6mp increase the chance of skin cancer is that people are more careful not to get sun burned all the time or get excessive sun exposure... Which might actually decrease the overall chance of skin cancer.

The other long term meds there are, are biologics like remicade and humira. But they also slightly increase certain types of cancer risks, like skin cancer. But just like immunosuppressives, this higher likelihood of getting skin cancer can be mitigated by just being careful with too much sun exposure.

I hope you get long term treatment soon and get better (staying on Entocort is just a short solution to fight your current inflammation). I'd suggest you read a lot about Crohn's, meds, non-meds things to consider to manage Crohn's (sport, stress relief, supplements, diet etc.) to understand what Crohn's is really all about (this forum is a good resource). When it comes to Crohn's knowledge is power. Also, don't worry too much at this point, a lot of people can get to long term remission without much in terms of symptoms for years, so there is no reason you can't get there with the right treament and long term management.

All the best,
Alex

P.S. Even though your grades haven't been that good, congrats to your degree. You'll see, after you started at your first job people really stop caring about your grades, it's all about your work experience and whether you are good at what your doing eventually anyway.

 

[tonisturrs]

Note: I've never actually used a forum before so I have no idea how it works and how I reply to individual people, sorry for being a bit dim!

Stardust_Fiddle, I think for me the most challenging part of it all was not being taken seriously, and even being told it was my own fault or that I was making it up... I just always thought why on earth would I make it up?! But nevermind, that's all in the past now and I'm ready to start learning everything there is to know about the disease and to get on with my life as best as I possibly can! At the moment for me it's the constant exhaustion that's the killer, I have a pretty high threshold for pain but I hate feeling tired. Hopefully soon the medication will start kicking in and I'll be back to my old energetic self I hope you get your medication sorted out and your flare ups calm down a bit, every couple of days sounds absolutely horrific!

Alex, firstly thank you very much! I am proud that I managed to get a degree when I've been continuously poorly for the entire year, I wanted to give up many times through sheer exhaustion and I didn't so I guess that shows some strength at least!

It wasn't me personally who was worried about the melanoma, I have a strong feeling that it was a random mutation that caused the cancer as I've never really been exposed to the sun and on the very odd occasions when I was I'd always been well protected, so although of course being safe in the sun is always smart taking extra precautions obviously didn't make much of a difference. I think the gastro lady I was dealing with simply hadn't encountered this problem before and wanted to make sure, I'm certain it won't cause a problem but I'll find out when I have my first appointment

I have heard of humira, but I'm not entirely certain what it does. I know the steroids are to try and put it into remission but I'm not really sure what happens after that! Like I said I'm very new to this, a bit of a crohn's noob if you will!

 

[Stardust_Fiddle]

This is my first forum too, but so far I’ve found it very enlightening and easy to use!

I am right there with you about not being taken seriously! I hope that you’ve found a good doctor (hopefully an IBD specialist) because that makes all the difference in the world! For over a year I dealt with doctors who kept telling me that it was all in my head or just IBS, and finally I actually ended up screaming at the last doctor, which is how I at last got referred to the IBD specialist I’m seeing now. People and even regular GI doctors just don’t get it, and it was a great relief to me to talk to a doctor who didn’t question me or second-guess what I was telling him.

I’m sorry that you’re having issues with exhaustion. I know how you feel; I am always so tired, and I take naps every day. It stinks not having energy, but I know that one day it will get better, and I keep telling myself that when I do start the right medication I will feel like Superwoman! Haha! ;-)

I applaud you for getting your degree! It’s amazing that you were able to do that while dealing with Crohn’s! I hope that you get meds that work for you and put you into complete remission soon, and that melanoma isn’t an issue! Best of luck, and keep us updated on how you’re doing! :Flower: