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Crohn's Disease Forum » Your Story » My Story - Help and Advice will be appreciated


06-05-2011, 11:24 AM   #1
Mr Kush
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My Story - Help and Advice will be appreciated

Hi, im a 24 year old male whom recently got told by my gastrologist that he thinks i have crohns and started me on budesonide tablets which i have taken for roughly 6 days now. My condition started a few years back where i was told i had a hemorrhoid which i went into an operation and had it removed by putting a bandage on it and removing the blood flow to it and let it drop of by itself. Shortly after that i was in so much pain whenever i needed to go to the toilet and the doctors again had a look and diagnosed me with anal fistula's, i had three operations on them to get removed where the surgeon cut them open waited for them to heal, one would heal another would open after a few months, one of them wouldnt heal at all. I always asked why this was occuring and always was told it was abscess. After 4 years of putting up with the anal fistula i started to get pains in my abdominal area quite a lot, they were there in the day time, they were there in the night time, constantly always in pain the only thing that would make them go away was co-codamol 30mg of codaine. On two seperate nights i had a fever that lasted only one night and suddently the next day they went away and i was perfectly fine, recently i been having diahorrea all the time once or twice a day the most - sometimes my stool has blood in it but thats understandable cause of the fistula's. I feel a sign of relief when i go to the toilet to urinate or empty my bowels it seems the pain goes away when i do, one night i couldnt even urinate no more as it was hurting and stinging so much - so i went to the emdoc and they gave me some antibiotics for it. Whenever i eat spicy food i constantly get hiccups that do not stop at all and sometimes im always belching for no reason at all and i cant control them. I've done loads of blood tests which have shown that there is an inflammation in the body and also did an MRI scan which showed there was inflammation in the actuall bowel - im gonna have a colonscopy in the next 3 weeks to do biopsies and to have a look to confirm its crohn's disease. My consultant is very sure that it is crohn's disease cause of the anal fistula he says and has started me on budesonide but they dont seem to help at all at the moment.

I feel like life aint the same as it used to be i hardly go out now, im always depressed cause of the pain and im on my last semester at university - done all my exams but i cant seem to do my assingments cause of the pain - life has become very very depressing with this pain

Anyone have any advice or thoughts on all of this ?
06-05-2011, 11:34 AM   #2
Astra
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Hiya Mr Kush
and welcome

So sorry you're going thro all this, you've come to the right place, there are lots of people on here with similar issues.
If you do get a definate dx of Crohn's, you could mention Infliximab (Remicade) to your doc. There are a lot of success stories with this drug and fistulas.
Also, check out the low residue diet, this will give your bowels a little rest and reduce the diarrhea. You can find info on this and Remicade here on the forum, use the search button, just type it in.
Entocort (budesonide) works ok, not as immediate as Prednisolone, but it takes up to 8 weeks for it to kick in. Give it a bit more time.
Hope you find comfort here with us, we understand what you're going thro.
Good luck with your scope
lotsa luv
Joan xxx
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BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

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




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06-05-2011, 02:45 PM   #3
lola99
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I know how you feel about life being depressing because of the pain. As soon as I wake up my back is killing me and my stomach is just like one big bruise. I feel alot better than I used to though since I started medication. One good thing about being diagnosed with something is atleast your doctors will know what course of treatment to start you on. I used to have cramps that were so bad i felt like knives were going through me now they are 90 percent better. I have hope that things will get better now that doctors know what is wrong with me. I hope they figure it out for you too. This forum is a great sense of comfort to me because you can talk to other people going through the same things and get a look at how they deal with it. Everyone on here seems to have different issues and symptoms. My crohns isn't as bad as others. No dirrehea,no fistulas,no weight loss,no bleeding. I had inflammation in my colon and got diagnosed after I my intestines swoll up so bad i was screaming in pain. My husband took me to the er and they said i had blocked up. My colonoscopy and biopsies only showed inflammation. It was really hard for me to accept that i had a disease that will never be cured. But its a disease that can go into remission out of nowhere. I wish you all the best and hope the forum is helpful to you.
06-05-2011, 05:46 PM   #4
ameslouise
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HI Mr Kush and welcome!

IBD can be really tough to deal with mentally - the physical pain and symptoms can really lead to lonliness and isolation. We've all been there! So you've come to the right place for support and understanding.

Hope you can get a DX soon, and like Joan mentioned, maybe try Remicade which has been a life saver for a lot of people.

Good luck!! - Amy
06-07-2011, 07:10 AM   #5
Mr Kush
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Join Date: Jun 2011
Thank You all for your advice - recently it has become hard as im stuck in the middle i honestly wish i dont have it but the doctor said with the symptoms i have that he thinks its Crohn's but he wants to do a colonscopy and runs biopsies to confirm it and with my anal fistula's he says its the only conclusion he can come up with!!

Im recently realising when i empty my bowels that the pain seems to go away and i've read that that could be IBS - either way i hope i have neither and its just an infection or something. I've decided to stop reading up on google and the internet as this just causes more and more stress to me.

Again i thank you all for your advice and will mention Infliximab to my Gastroelogist when i next see him.
06-07-2011, 07:25 AM   #6
Lisa
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The presence of the fistulas does point more toward Crohns' than IBS...and you may want to get yout gallbladder checked due to the belching - that is a sign of an issue with that.

A friend of mine recently underwent a TON of tests to find out what was wrong with her, she was having all kinds of GI issues and the docs couldn't figure it out...FINALLY realized it wasn't her intestines that were causing her problems- but her gallbladder! It is now out and she is feeling 100% better!
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30 plus years and counting with UC/Crohn's!
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
06-07-2011, 12:02 PM   #7
lookame
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:/ Sorry about your struggle. I've had quite a struggle myself(also 24 yrs old, suffered for a full year before a doctor finally treated me...really I'm spewing blood out my butt and you give me pills and say these wont help you finally diagnosed aug 2010) I went through a period of denial and depression as well and every doctor I saw after my diagnosis gave me a sort of half laugh and would say you'll have to take medicine the rest of your life...thanks dick I didnt already know that one. The thing is though it does eventually get better, one way or anouther it gets better. Just hold up hope
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Diagnosis: Confused officially diagnosed in 2010

Bloodwork is indeterminate IBD, biopsies are crohns positive, symptoms and visually it's UC

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eosinophilic esophagitis 5/2015
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