True Story: I Have Crohn’s Disease


This is one of many True Story interviews in which we talk to people who have experienced interesting, challenging, amazing things.  This is the story of Davinia and her diagnosis with Crohn’s disease.
Tell us a bit about yourself!

I’m
Davinia Hamilton. I’m 24 years old and I am a student/writer/designer
originally from Malta but currently doing my Masters degree in Digital
Media in Dublin. I love reading, writing, watching TV series and films,
the Web, photography, theatre and music. I also make jewellery and run a
lifestyle blog.
For those of us who don’t know, what is Crohn’s disease?
Crohn’s
disease is a chronic inflammatory bowel disease which can affect any
area in the digestive tract. Mine affects my terminal ileum, inside the
small intestine. It is caused by a number of environmental,
immunological and bacterial factors. During a flare-up, symptoms include
nausea, loss of appetite, chronic fatigue, abdominal pain and joint
pain.
How does Chrohn’s affect your daily life?
I
am currently in remission, so symptoms are minimal; however, during my
last (and only – so far) flare up I experienced plenty of fatigue and
nausea. I would not be able to eat full meals without feeling unwell,
which usually meant I could never enjoy a meal at a restaurant without
feeling nauseous and tired afterwards.How old were you when you were diagnosed?

I
was 22 when I was finally diagnosed, but I had been having symptoms for
at least three years. It started with nausea and stomach pains after
meals and a visit to the doctor suggested I had gallstones, which I had
removed along with my gallbladder in 2006. When the symptoms persisted, I
was shuttled from specialist to specialist and eventually told I had
IBS, or I was imagining things, or I had acid reflux, or food
intolerance, or rheumatoid arthritis. They could not pin it down, and
yet blood tests showed there was an inflammation somewhere.After
I did a food intolerance test I cut pork, sugar, coffee, chocolate,
corn, tomatoes and lentils out of my diet for three months. This made me
lose quite a bit of weight but did not decrease the symptoms at all.
Finally, I begged them to do a colonoscopy (despite them telling me I
was too young) and this resulted in them finding a small ulcer in my
small intestine and diagnosing me with Crohn’s, finally, in 2009.

How have you chosen to treat your Crohn’s?
When
I was first diagnosed, I was put on a six-month course of steroids to
kill the inflammation. Worst six months ever. The side effects were
terrible and left me debating whether I should just deal with the nausea
and forget about everything. There was weight gain, cramps in my feet,
hiccups, insomnia and other awful things… But, after I finished the
course, the side effects faded in a matter of weeks and my symptoms were
gone. I now take maintenance pills every day and will have to do so for
probably the rest of my life to avoid another flare up.What’s more, I
try to maintain a moderate diet. I love food and would never completely
cut ‘yummy’ things like steak, pasta and pizza out of my diet, but I
make a conscious decision to include more vegetables with every meal and
drink at least 2litres of water a day. I’ve also had to bad stress from
my life (which is hard considering the super busy life I lead). I’ve
done this by meditating and trying not to let the small things get to
me. I have a small but strong network of very supportive friends who I
can speak to whenever life gets a little too rough and they keep me well
on track.

Will you ever be ‘cured’?
There
is no known cure for Crohn’s, but the symptoms are treatable and there
is medicine you can take to keep yourself in remission. I was lucky
enough to have a very mild case of the disease, but it can get quite bad
if left untreated.Are there any resources you’ve discovered that have been particularly helpful?

I
had been waiting for a diagnosis for so, so long that it was sort of a
relief to me to finally have a name for it – even if it was chronic.
I took my pills and made decisions to live better and didn’t seek much
help from support groups or online. However, I know there are plenty of
them out there and so many people online who are willing to share their
stories and advice and support.
What advice would you give to anyone who has been given a Crohn’s diagnosis?
Don’t
panic! Take your meds, try and get through the side effects and make
sure you have people you can trust and speak to when the going gets
tough. You know your own body better than anyone and if you listen very
closely, your body will let you know what it can and can’t deal with.
Eat smaller portions, eat fresh food whenever you can, do mild exercise
like walking or dancing. Most importantly, try not to stress out. It
isn’t a death sentence – it’s something you learn to live with.Do yourself a favour and don’t be looking online for the worst case
scenarios because that is exactly what they are and you don’t need to be
freaking yourself out. If you are feeling like you can’t handle the
news then don’t be afraid to see a counsellor or speak to a close friend
about it.

Do any of you have Crohn’s?  Any questions for Davinia?

24 Comments

Mel

I suffer from Crohn's Desease too. I was diagnosed with it when I was 18 and I live with it since almost 10 years now. Crohn's is a highly individualistic and mysterious Disease but after so many years I know exactly how my body reacts to it.

I had surgery done on my intestines last November, due to a stenosis and a fistula that build up over the years.

Davinia is totally right. Just don't panic! It sounds rough and it sure will be hard but it really is something you can live with.

When I was diagnosed I went nuts trying to find literature about this illness. There wasn't a single book out there. To this day I think that there is not one good book on the market to help gather information. That's why I started talking about Crohns disease on my blog (www.sweetandlovelyblog.blogspot.com). I share tips and tricks and personal experience on how to deal with this disease.

I'd be glad to help anybody with any question about this disease.

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melaniecfan4ever

I have Crohn's now for two years and I am 22, just these past three days I have been having up set stomach, nausea and some vowel movements and I haven't eaten any thing for three days although I have tried. Is there any thing that you can suggest to help with the stomach pain & nausea? Janie.

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katie d.

I don't have Crohn's, I have IBS, but I know how much it can affect your life! It sucks. Hang in there to anyone who's struggling to figure out what's wrong, and remember it's not in your head, no matter what anyone tells you. Stay on it until you get some relief. Things that work for me: yoga on a regular basis, cutting carbonation, peppermint tea/mints/oil, and getting enough sleep!

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Emmi

Fellow Crohnie here. I am glad to see that despite the years of confusion, you are under good treatment now and have a mild affliction. Aren't steroids the worst? They work great for quelling flares but the side effects are so terrible.

I failed two pills, Pentasa and Imuran, before I got on Remicade infusions. That was a fun year :-/ but if you ever need/want to switch treatments, I can highly recommend Remicade. I get a 3 hour infusion every 8 weeks and it works amazingly well. It does suppress the immune system so I get colds a lot and have to be careful of infections, but considering the alternative it is totally worth it.

Keep hanging in there and staying healthy!

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Lorra Fae

I know people who have eliminated Crohn's Disease via diet – specifically a raw vegan diet. It really baffles me that someone would rather keep pizza in their life than get rid if a debilitating problem.
Of course doctors are not going to recommend a diet and lifestyle change – they can be sued for even mentioning something like that – the whole medical world is insane – I really recommend looking into an alternative option. But if you'd rather stay on drugs and eat junk food….okay. It just makes no sense. It IS possible to get rid of! If you look up raw diet + Crohn's you will find much info.
Don't let it put you off – eating this way is amazing, I've done it for 4 years and hey – just TRY it – if it doesn't work, the pizza and drugs will still be there.
Good luck.

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Anonymous

I'm a doctor with Crohn's. Raw food really doesn't help when I have a flare — in fact, it can cause obstruction. Please don't make blanket recommendations; encourage people to work with a nutritionist who can make recommendations based on their particular needs. Concern trolling is not helpful! Folks with Crohn's don't need to be made to feel guilty about their diet — whatever they can eat comfortably that stays down/in and provides optimal nutrition for *them* is best.

I recommend dietary and lifestyle changes before medication in all cases where they are relevant (i.e. not for a broken leg!) and of course cannot be sued for this — the very idea is beyond ridiculous. I am a physician, teacher, and biomedical researcher in the US at a major medical school. We teach our medical students that lifestyle changes are the cheapest and most effective medicine, though as we all know from personal experience, often more difficult than taking a pill. I also support integrative medicine for my patients and for myself; I practice meditation and prescribe it as well as yoga, and I go to an acupuncturist weekly.

ETA: I see below that plenty of others have made my point. I'm not sure where you have run across doctors that are controlled by the pharmaceutical industry. Drug reps are not allowed near our offices anymore, thank goodness. Direct-to-consumer marketing of medications (drug commercials on TV) are the new thing. If you end up with a doctor like that, vote with your feet! Get rid of him (or her)!

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Tina

Most doctors push drugs first in all cases crohns has been around for over 100 years and the only thing doctors and pharmaceutical company’s do is make more drugs that people have to be on the rest of their lives not to mention all the side effects in all these years with so much technology medical experts can’t come up with a better cure then drugs or at least drugs that don’t have side effects and actually work overtime especially with crohns desease all you hear is theories research over 100 years and no one can find a cure that is inexcusable that tells me that they don’t want to find a cure because everyone in the medical field will loose money which is more important then people’s lives!!!! They have a cure they just don’t want to lose billions of dollars money is more important then people’s lives all should be ashamed of themselves research research figure something out genius’s and stop screwing with people’s lives already !!!!

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Meg

Another Crohnie here! I second Lorra's recommendation of using diet as a method of controlling disease. A lot of Crohn's sufferers end up needing surgery to control their disease – scary stuff! I know you can lead a full and healthy life with a colostomy bag, but why go there when there are still alternatives to try?

I've been on the Specific Carbohydrate Diet for over a year now, and it's helped me a lot! It's definitely not a raw or vegan diet, though. Since Crohn's affects people very differently from case to case, I'm not sure that any ONE diet is the answer for all of us. I'd recommend doing some research and determining what makes sense for you.

As a bonus, all diets I've seen for treating Crohn's are fairly healthy, so it definitely can't hurt! Cutting out sugar and processed foods are things I've happy to have done.

I'd also like to point out that Remicade, while a very helpful drug (I'm taking it right now), is extremely expensive and fairly new, so no one really knows what the long-term effects are. One of the reasons I'm trying diet to treat my illness is that I hope to go back into remission and off the heavy, scary drugs one day. I'm worried that they could do a lot of damage in the long run…

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Marthe

I was diagnosed with IBS and went through all the same tests and all. So annoying when they can't just do the simple tests they need in order to give the right diagnosis!

I also support your advice on not reading lots on the internet, it can just scare the hell out of you!

I'm glad to hear you're in remission! 🙂

Sending love,

Marthe

Reply
Mel

staying on a healthy diet is not going to eliminate CD. Yes, 90% of the time it will make you live inflammation free for a longer, or even very long, period of time but it will never illuminate it. In general raw foods are exactly what most crohnies can't handle. But, I know people who can eat about anything raw and nothing unhealthy…and then I know people who basically can only live with low dietary fiber and have no problem with eating grease packed foods. It always depends on your own body.

If she can eat a piece of pizza once in a while without having problems then why shouldn't she?

Also, the first thing my doctor did after my diagnosis, is send me to a nutritionist that was an expert dealing with crohn's disease. My doctor constantly tries to help me eat healthier and so keep my inflammations at a low. If your doctor doesn't talk to you about the food you eat, then you definitely have to find a new doctor.

I also recommend you to go and search for a alternative to steroids. I used steroids and salofalk for +5 years and it was a nightmare. Since 3 years now I'm on aza and I never had a problem with inflammations since. As with the food, you have to figure out which medication works right for you though.

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Lorra Fae

If you go into it with that attitude, you are not going to find out that it IS possible, and that people have written books about how they have eliminated it – sure maybe it would flare up if they went back to their old ways, but it can be done.

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Meg

Diet isn't a proven cure, but it has pushed some people into remission, sometimes for life. I figure it's worth a shot! 😉

Oddly enough, not one of my doctors told me to try modifying my diet. I met with a nutritionist once, but the diet she advised made me anemic and did nothing to improve my symptoms. I'm glad you've someone more helpful, Mel. 🙂

What it all comes down to is that it's all about what works best for you, whether that's drugs, diet, stress management, exercise, surgery, vitamins, alternative therapies, or all of the above. I just hope for alleviation of symptoms for my fellow Crohn's sufferers, and perhaps a cure someday… 🙂

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Lorra Fae

It makes me sad that people think there are "cures" out there for things – everything has a cause – remove that cause for healing. If you were not born with Crohn's disease, then it developed somehow – lifestyle and diet are culprits. Doctors are trained to treat symptoms, they are bound by many different things that prevent them from treating without drugs/surgeries etc – it is INSANE how the medical industry operates, and very, very depressing. I've been reading about this for years. There are reasons certain clinics and physicians have to operate outside of the USA to be able to heal people. Everything is controlled basically by the pharmaceutical industry and they do not have your best interest in mind – watch "Food Matters" – a billion dollar industry is not going to promote something like dietary changes to heal anything.

If someone with IBS or Crohn's cannot digest vegetables, there are veggie juices you can do, fruits, etc – there is a book or two – Self Healing Colitis & Crohn's by David Klein, healing Inflammatory Bowel Disease by Paul Nison.
Just check out youtube, etc – tons of testimonials. I think people who eschew this have not looked into it or tried it – of course a doctor is not going to recommend it. They never do. Doctors generally know nothing about diet – which is why they never ask about it, or receive nutritional training, and even if they did, it would be the type that perpetuates disease so they continue to make money from peoples' illnesses. There ARE good docs out there, but good luck finding one who is going to look for the cause instead of treating the symptoms.

Good luck, again. I want nothing more than to help people take responsibility for their own health so they do not need to rely on drugs or doctors. The body heals itself when you take away the problems and let it do its thing.

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Suzie Thomas

The ideal abdominal exercise for fat loss are movements that function additional of the entire body and core rather than isolating the direct abdominals by means of a movement like the crunch. To truly get ripped abs you must burn the fat off of the belly. It doesn't matter how many ab exercises you do each day for those who have a fat stomach you'll never see them.

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Anonymous

Great thread – glad I found it. I have had Crohn's for 8 years. A few tough flares in the beginning before I found what worked for me. I have 2 quick comments to add.
1. I agree that you should think carefully about diet and stress. My GREAT doctor, who I love, still wasn't super into the diet stuff, but there are a lot of great ideas out there. I use the Specific Carb Diet if my stomach acts up, and it works well. For me, it was yogurt every day that helped the most I think.
2. Remicade is a good, but very powerful drug with some tough complications for some people. I got Drug Induced Lupus after being on the drug for several months. This gave me severe arthritis amongst other symptoms. My earlier doc (this was about 6 years ago) didn't know about this reaction, and so it was not diagnosed for several months. If you are given this medication, keep an eye out for that. It was pretty tough.
3. Stress is another thing to think about – but don't stress over it! 😉 I think that 'my gut knew' I had some things in my life I wasn't dealing with, and it got a little bossy until I did, so journaling can be good too!

Good luck fellow Chroneys!
<3

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Karena Ellitson

Hey I'm 18 and I have been struggling for 6 years with an undiagnosed illness.

The doctors still haven't found a diagnosis, they don't know if it's IBS, Chron's, UC or coeliacs.

I get really bad upper and lower abdominal pains with nausea and acid reflux, loose stools, heartburn, bloating, fatigue. It's been awful.

I've had basically every test done to me, endoscopies, ultrasounds, a pH test, a cystoscopy and just recently a colonoscopy which they found ulcers and inflammation in my large and small intestine. I'm waiting to hear for the results but i wont hear for another 3 months, and i'm so sick of being in pain everyday.

If anyone out there has the same symptoms or knows what i'm going through, i would love some advice.

Thanks, and good luck to all of you 🙂

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Anonymous

I was so happy to hear your story. I have been suffering with some type of flare up for some time. I am going back to the GP on Thursday and he is supposed to schedule a colonoscopy. I have symptoms of Crohn's. Like you I have suffered for so long it would just be a relief to finally know. I also have presented with symptoms in my throat. All these stories give me hope!

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Daniel Puga

I've been diagnosed with Crohn's disease for a while now, I'd say around the begining of this year, 2013. It's been tough just looking down and the bloody stool everytime you go to the bathroom. I've been taking Maselemine (I think that's what its called), and it helped me for a while. Until my doctor recommended me another medication, and it got kind of worse, more blood. Right now I'm just trying to figure out how to decrease the blood from coming out. I have no stomach pains or anything else which is good. Before I was diagnosed with this, It was very hard for me to go to the bathroom. I don't know if any of you had a problem with that before you were diagnosed with CD. But, it was hard going to the bathroom since the stool had an abnormal size… And my guess or my theory of the cause of Crohn's is that when your intestines are expanded by having trouble doing the bathroom, your immune system thinks your intestines are acting like it doesn't belong in your body. And so, it attacks your intestines, because I was told by my doctor that cronh's is when your immune system does not recognize your intestines and therefore attacks it. And So that's my theory of how Crohn's disease starts, your intestines expand by the size of the stool, triggering your immune system to thinking it doesn't belong there. I really do hope there is a cure because it's very hard for me and for everyone else with these symptoms. But thank god so far i'm doing great 🙂

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Anonymous

As someone recently diagnosed this story was something I needed to hear. Bowel diseases are not something we talk about in society and it is seen as slightly "shameful" which it shouldn't be.

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Anonymous

That is so my theory too about having C issues which turns into Chones…glad I'm not the only one who thinks this

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Cortni from Texas

Hi, my name is Cortni (pronounced Courtney) Im 33yrs old. Since 2008 Ive had chronic nausea especially in the mornings. Then I will get either bouts of diahrea or constipation with pain in my stomach. Then I just dont feel good for weeks or even months & I cant keep weight on(im 5' & 109lbs.) bc Im usually so nauseated I cant eat. Then I'll go months feeling like a normal person thinking it went away then Bam! I'll be traveling or just relaxing @ home & the nausea kicks in then the diahrea. Its been so bad that I have projectiled vomited. Ive been to a GI & they said I has ibs & anxiety.They did the barium & tested me for the h.pylori & neg results. Then even said i didnt have acid reflux. The dr gave me meds fir ibs & anxiety. But waking up every morning extremly nauseated or getting sick just doesnt sound like an accurate dx. Alcohol is the worse thing for me. I'll be deathly sick for a week. Ive seen a cardiologist bc my heart would pound,no problems there. Im always scoping out bathrooms wherever i go just incase another "episide" hits me. And i have a 3yr old so if im out in about it really makes me anxious if one comes on. Id appreciate any advice you could give me. Thank you, Cortni from Texas

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Connie

Any info would be great!! After 1.5 years of constant nausea, loose bowel movements, cutting my diet down from no dairy to sugar etc from many many tests blood tests,ultrasound, barium test, colonoscopy etc many visits to the Drs and specialist to loosing 35 kg in 3 months I was so sick not wanting to go to work or anywhere for the fact of knowing I would be making that rapid dash to the bathroom, with bloody stools.i was being told by my work place I was depressed and stressed and they cut down my hours after confirmation by Drs I wasn’t stressed, it was like no one believed me but my family. It was awful I felt like giving up I just wanted some answers and very scary finally my specialist told me he found some swelling and inflamminatikn in my small intestine and took samples he is 90% sure it’s crohns but isn’t going to give me a 100% diagnosis for it depending on my reaction to the medication. I was put in sulfasalazine 3 tablets a day after 12months I was to cut down my dose to 2 tablets and so on. His response was if you experience symptoms again come back and we will do the tests again. 😔 frustrated much as I still done have an exact answer. All my symptoms went within 2 weeks of taking the medication I was able to eat normally from not eating basically anything but a handful of dry cereal per day. 12months has been and I have began to cut my medication down to 2 tablets. The last couple of weeks I have been feeling nauseous, random bouts of diarrea and tired again. Would anyone have any ideas as to if this is my body going out of remission ???
Please tell me no I dont want to have to go through all of that again!

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