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My story so far..

For the past few months i've been reading up on this forum and i thought i'd introduce myself.

My name is Yanet, i'm 24 years old and i live in the Netherlands.
I was diagnosed with Crohn's disease at the beginning of this year on January 5th 2013.

It al started a few days before New years when i ate some weird soup and started cramping up and started having bad diarrhea with chills, weightloss, pain and a bad fever. Finaly i decided to call the emergency doctor on 1st of January when i just couldn't take the pain anymore.

From there they sent me to the ER under the suspicion of having an appendicitis. They took blood etc and then tried for an echo but they couldnt see my appendix but they did see a cyste on my ovary.

They weren't sure about the appendix and decided to admit me and wait for the blood results and get a gynocologist to take a look at the cyste.
Eventualy the cyste turned out to be nothing and my bloodwork was trough the roof so they started me on a super high dose of anti-biotics to get the fever under control and then wait the next day for a CT.

The CT confirmed that my appendix was just fine but they saw something weird with my colon. They referred me to a GI who decided to take stool sampels and scedule me for a colonoscopy.

The stool sample provided them with a bacteria that was having himself a party in my intestines. The Campylobacter bacteria and the colonoscopy where they took biopsy of tissues...provided them with a clear picture.
I had lesions on my large colon and around the mouth where it goes to my small bowel. That together with the pathology report yielded the diagnosis Crohn's disease.

After that they decided to threat the bacteria first and then do an small bowel MRI and a gastroscopy to see if the Crohn's had spread to my stomach and further because i wasent eating and it was bothering me.

The gastroscopy showed the crohn's had started but because i was nuked with so much anti biotics it stopped and i only had a cronic gastritis left in my stomach. The rest of my bowels were clean.

In total I spent 3 weeks in the hospital because everything was complicated due to allergic reactions i kept having to the medications. First of the CT dint go without a hickup...I am allergic to jodium which is used in the dye in the contrast....they told me to try it anyways and that it would be fine....after only 1 cup of the stuff my body proved them other wise by having a severe reaction....After all that, that 1 cup was sufficient for the CT. The Colonoscopy was traumatic cuz the meds dint kick in enough so i woke up when they were poking me from behind and taking the biopsy...to say that was painful is just an understatement.:ybatty:

Furthermore they tried to give me a large dose of Prednisone to calm my system down . I reacted allergicly to that, after they switched me to Entocort...which also din't last long in my system.
The only thing that semi worked was the Salofalk (mesalazine) Enema which was used to treat this localy....Next to all this experimenting they kept pumping me with anti-biotics to kill the bacteria.

After my reactions in the hospital to corticosteroid drugs, they wanted to test me to be sure i was truly allergic. And as my luck would have it i'm severly allergic to it all. My Allergist / Immunologist doctor and my GI were surprised at how bad it was. So corticosteroid drugs were rulled out as treatment right away.

I was also tested to see if i was Lactose-Intollerant...turns out thanks to my crohn and the bacteria who did mayor damage to my intestines I am now super Lactose- Intollerant so i was also refferd to a Dietician to help me with my diet and help me with the use of Medical Nutritional drinks because i havent been eating much.

The Medical Nutritional drinks I use are Nutricia Nutridrink, Ensure Plus and Ensure Plus Fresh. Next to that i eat small portions trough out the day when i can...my stomach doesnt always take everything. And i replaced everything with lactose intollerant products. I stay away from soda, fried foods and spicy foods. I try to use fresh herbs most and try no to use much butter or oil when cooking...preferably i dont use any

In the 2 months after my Hospital stay i've tried Azathioprine (Imuran) and 6 MP (Mercaptopurine (Purinethol, 6-MP) next to Buscopan for the cramps, Omeprazol for my stomach, domperidon for the naussea and Salofalk enema's.

Both medicines gave me allergic reactions and horrible side effects.
In total i've lost about 13 kilos and am still losing more slowly now. I'm still in a very active period and am suffering daily with fatique, cramps, bloathing, chills , diarrhea, pain in my lower right stomach....:poo:

Its been 3 months now of trying new meds over and over again..
My body has been betraying me over and over again with the meds and its getting to a point where its just hard to keep a smile on my face.
I try to smile and be positive and i have wonderful support from my family and friends....but most of them dont understand whats its realy like....the roughnes of this disease and the toll it takes both mentaly and physicly.
And to try to wake up every day and try to do stuff eventhough your energy level is next to 0.

At the beginning of this week i had to quit 6 MP cuz of the allergic reactions after just 2 weeks of trying it....
The GI doctor now wants to go ahead and Nuke me with Remicade.
Before i can start he's going to test me for Tuberculose and take a lung X-ray.
This happens on friday and i get the result of the Montoux test for TB on monday...after that on thursday i have an appointment with my GI.

Here in the Netherlands they have a wonderfull team of GI nurses and doctors who all work together and they have all been very supportive and patient in trying to find the right meds..

Right now i'm reading up as much as possible on Remicade to educate myself and to prepare myself...

I'm pretty sure i might have forgotten something in my story as its pretty long so feel free to ask anything. Also excuse my tiny typo errors as i've been typing pretty fast and wasen't really paying to grammar...

Xx
 
Hey Janet,

Sorry to hear you had it rough with meds since your diagnosis. From the weight loss and the symptoms you describe you really got quite an active Crohn at the moment. Considering that you had bad reactions to immunosuppressives, your doc is certainly right to suggest biologics. There is a actually research that suggests that early use of biologics for Crohn's is preferable to immunosuppressives specifically for people who don't have a surgical history.

Remicade sounds scary at first but if aza wouldn't work I would not hestitate to go for it or another biologic drug like Humira or Cimzia. Reading up on it around here is a good thing to get informed from people who use biologics first hand.

Lastly, I hope you will get better soon. It seems you are already doing a lot things right such as eating food that doesn't lead to problems. Other things you could look into is vitamin therapy (there are threads about it on here) and once you are better endurance sport which relieves stress and can help with remission.

All the best,
Alex
 

Jim (POPS)

Jim (Pops)
Location
Antioch, Ca
Welcome to the forum, it all happen really fast for me also.

I hope you find something that will get everything under control.

You WILL find the support you want at this site. The place is loaded with people just like you and me.

I find the chatroom is a great place for support when you are new here. You can ask questions and get the anwsers fast. Hope to see you there soon.

Jim (Pops)
 
Wow thnx for the replies guys...i really apriciate it

Its my first ever flare up and it seems to be quite the trouble makes ...
Before this i had a few symptomes now and again but never thought it was something chronic...so you can imagine my surprise...

For now i've finding a bit of comfort in the fact that I am not alone in fighting this disease....and some stories are quite insperational on here...

Thnx for the support:ghug:

Xx
 
Well the tests went great...now all i have to do is be patient till thursday for my appointment with my GI to set the date to start remicade...I'm hopefull yet anxious at the same time..

Xx
 

Artisan105

Yondaime
Yea tell us how things go. I am on the Remicade now. IV injection every 2 months. Typically the day of and the day after you will feel like poo -_- but after you will feel a lot better.

Welcome to your new community of friends who DO UNDERSTAND :]

ttyl. Ciao.
 
Hey looks like you have been through quite a bit!
Let me know how the remicade goes, im on azathioprine and its not working so I think I may be starting it too in the future.
Best of Luck! xx
 
Wel the doctors appointment din't really go as planned.

My Bloodwork came out alright so he wishes to do a Colonoscopy before prescribing me the Remicade. He also wants to take some stool sample cultures to see if i don't have a bacteria right now again thats making everything worse.

So i'm confused as to how my blood can look perfect but i can feel so damn miserable.
The Colonoscopy is planned for the 7th of May and i'm nervous cuz the last time woke up during and it wasnt a pleasant experience to say the least...

I'm also not looking foward to drinking that crap before the colo....

I' just dissapointed at having to wait more weeks again before something is done..

Xx
 
Oh dear, sorry it didn't go as planned.
I'll be thinking of you on the 7th May, and having my tube taken out! (coincidence?) Colonoscopys suck I know but if it gets you on remicade im sure it'll all be worth it :)

Best of luck xx
 
So i'm confused as to how my blood can look perfect but i can feel so damn miserable.

Xx
Always ask for a copy of the print-out and go through it yourself. It's important to understand what's going on. Plus, without a copy, how can you check whether they actually ordered all the required tests including all relevant inflammation markers etc.?
 
Hahaha Ki3....coicidence...perhaps not...but thanks for the support... I hope everything goes well for you when the tube come out.

@ Alex...cuz he showed me then on the screen and showed me how they were in january when i was admitted vs now...He said it could be the crohns is in my bowels and intestines but not showing up on the blood work...he said bloodwork only shows the inderectly how the body is doing.

I'm a total newbie when it comes to this so when he said that i was like WTF?....seriosly...i mean he sent me to get all the tests done for the remicade and then before hand still wants to do a colonoscopy....then why sent me in for all the testing...
I was quite dissapointed about it....

But now after sleeping a night on it....i'm back with a vigor to fight for my self to get the treatment i need....i want to function like a normal person again....and right now thats just not happening...whether my crohns is hiding somewhere in a deep dark hole in the large tunnels that is my bowels & intestines i dont care....i just want relief...

I'm just setting my mind on 7th of May and live towards that for now....

I posted the same on a dutch forum and they told me that some of them had their bloodwork come back fine 2 but in the meanwhile their bowels and intestines were screwing things up and not to worry about it too much....so i'm trying not too..

My mom understood what the doctors ment with doing more tests but at the same time shes not very happy about it....And my dad when he heard about is was furious.....he feels helpless cuz he cant be here to go with me to my docs appointments....he lives on the other half of the world in Curacao...so its diffucult for him to hear these things and stay calm.....hes been wanting to whisk me away to Colombia for a while now where they threat crohns differently that here in Europe......but i nixed that idea when i heard it cuz i wanted to be my own advocate and make my own decisions about my body...

So trying to keep everyone else calm is already a large task....and keeping my self from stressing out is a daily chore....i know i know...stress is no good ...but when your body keeps betraying you with the meds and then does strange things its hard to not stress...

*Sighs* I just wish i could wish away the crohns.....its been a total pain in my behind....quite litteraly....

Xx
 
yc_angel, you shouldn't need to fight for treatment. Even if your blood work comes in perfectly normal with no signs of Crohn's, but you have sympthoms and you have been diagnosed with Crohn's, you should get long-term treatment. There is no reason at all to not go on remicade, another biologic drug or immunosuppressives, just because things have gotten better - quite on the contrary, now is the time to really go for long-term management.

I would seriously think about changing the GI. What should another colonoscopy prove? Except if the first one wasn't conclusive.
 
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@ Alex thanks for your encouraging words..

The first colonoscopy was quite conclusive...from seeing the Crohn's and identifying it immidiatly to the biopsies they took wich came back super positive to the photo's they took with MRI and CT and such....it was triple confirmed if you can say that....so there realy is no doubt....which is also why i was dissapointed to hear he wanted another colonoscopy...

I thought i had a good GI cuz he worked in a team with other doctors and nurses and stuff.....so i'll wait and see what happens but i'm not satisfied with how things are going..

I'm just scarred ...right now the crohns is controlling me instead of the other way around...i feel like the quinea pig who needs to try all the meds and tests first before they give it something that will work....

Xx
 
*sighs*...my stomach is making all this weird loud noises...kinda seems like i should call a plumbing company:tongue:

After being constipated for 3 whole days which was royaly a relief and also a pain in my behind...you'd think i'd finaly go nicely to the :poo:....but no it was a drama and i have the Big "D" again...makes me wonder wtf was so backed up in there.....its just makes me nuts..

I'm sitting here with the chills again...if its a fever or not i dunno...i'm just too damn tired to get up and look for the thermometer.

I've taken your advice to heart btw alex....i'm going to have a talk with my GP to see if there are any other GI's i can go to if things go badly with the colonoscopy and my current GI....its always handy to have a plan B....
My anger and frustration at how the conversation went last week hasent realy subsided....its gotten a lil bit worse i'd say....:ymad:

I got my moviprep package today at the pharmacy to use on may 6th and 7th and I hid it right away...the simple thought of that horrible stuff makes me wanna trow up....perhaps i'm being melodramatic today but i cant get my previous experience out of my head...

Perhaps the fact that i was up all night in joint pain hell is also playing a good part, its hard trying to explain to a normal person how my body feels like its on fire 24/7...and how my joints swell up to a degree where i can barely make a damn first....they look like pigs in a blanket...al puffed up and red..

Meh i'm getting of my rant chair now otherwise its going to be a long post :ylol::eek:utahere:

I hope ya'll are having a better day than I am..

Xx
 
Oh dear sorry your having such a terrible time. I know 'the big D' can be horrible, I've had it pretty much since January! So you get joint pains in your hands? My doctor seemed suprised when I said i had joint pain in my knees and hips, is it uncommon? Well anyway I get joint pain in most parts of my legs and at the moment have to use crutches as its so bad. I hope you have some better days coming your way and good luck with the colonoscopy xx
 
@ K13....yeah i get it in my hands, wrists, shoulder, lowerback, knees, anckels..
One my left knee i had an MPFL operation last year to fix my dislocating knee.....and if the pain were only there i'd say alright its from the bad knee but its not....both swell up and hurt.

The fingers bother me the most because I am an graphic designer....i work with my hands & computer.....whether its drawing or making things on the computer and although i've been at home and not working as a creative person i need my outlet to let off some steam....and when i've having difficulty even typing on the damn thing...its when things get tricky and i get a little grumpy..

Its not uncommon but it is damn annoying when you get it and it doesnt go away...
And the big "D" has been my unfortunate friend since january too...on and off together with constipation...going to the bathroom "normal" seems like a far away dream for the past few months....and i'll be happy when that happens again...

Xx
 
Sorry if the post is glued together as i'm typing from my mobile..

I had my colonoscopy today and to say it was traumatic an understatement.
Just like the first time my body resisted the drugs they gave me to sleep... So i was awake for the whole procedure and it was soo damn painfull. They even dosed me up with a second dose of the drug but at that point it just dint do anything for me. I so totaly cried like a baby and even the nurse trying to soothe me dint work.

Apparently my doc saw some inflamation and took biopsies again and sent me home with pentasa pills to put up my bum... Next week i have a appointment planned to get the results and also talk about further threament.

My belly is so sore at the moment, its like i can feel where he took the biopsies.
I so wanted to scream at my doc i told you so but i dint think that would help me ...so i dint... Right now im easing the pain with a heating pad and pills to take the edge off..

So besides feeling weak i've just had it today... And running a low fever isent helping me either... So i'm off to bed..

Xx
 
I'm sorry to hear it went so badly. But hopefully they got some clear results and will get you some good treatment! Xx
 
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