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3132757

3132757

Joined
Mar 13, 2010
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51
Hi all CF members,

I have been reading as a guest on this forum for a while, but as of late I have decided to sign up. I noticed it is encouraged to tell "your story" when you register, so here it goes, but in comparison to some here, its nothing really.

Im am 23 y.o male from Australia. Very fit and healthy.
I was officially diagnosed with CD in November 2009, but this was after a year of tests and symptoms which really began in my final year at Uni.
Turns out i have inflamation in the Ileum and a bad case of fissures. The doctor diagnosed my case as Moderate and recommended me to go onto Imuran.

I did all the genetic blood tests that would determine if I was suitable for Imuran, but whilst waiting for the results, I did a lot of research in regards to alternative treatments and side effects of immunosuppressant’s etc..and decided not to take Imuran and just try self management.
I follow a strict diet (wheat free, dairy free, sugar free, yeast free and alcohol free) which was (and still is) extremely difficult to adjust to as I love my sweets and drinks. But the flare ups are enough to keep me sticking to it.

I also am taking bioresonance treatments, not cheap, but it seems to be working for the moment. I just visited my doctor last week and if things start to get out of control ill be going on LDN or even hook worm! But that seems to be a while away, at the moment im still taking more tests to really get down to the nuts and bolts of my GUT. Unfortunately, the fissures come and go and so do the flare ups but at the moment I seem to be doing really well, and hopefully with my self management it will stay that way for a while.

I have been reading many stories and threads on this forum, and you guys really are an encouragement. Real fighters.

F
 
:bigwave:

Hello!

I'm new as well. This place is pretty welcoming, you'll feel right at home in no time. My story is very similar to yours--20 yr. old male, fit, recently diagnosed, otherwise healthy etc.

Let us know if/how the worm treatment goes. Sounds promising.

-JD
 
welcome to the forum. Sounds very harsh diet there (no booze!!!) Id have taken the drugs lol. Hope it works out ok for you
 
Thanks for the welcome guys. Rose City, how are you coping with it all? Are you on any meds ?

Cheers Rygon, believe me it is still extremely tough to stay 100% sober! I love my alocohol, but im getting used to it now...slowly.
 
I am currently on 40mg Prednisone a day, about to taper in a week or two when I start my Remicade and Azathioprine.

I'm actually coping mostly okay. Had to drop out of school (Sophomore at UW in Seattle, WA) for this quarter (and probably year, I would have to go back in a couple weeks when I start the drug therapy, which I don't see happening). I will probably remain out of school until Autumn of this year because in the bigger picture my health is more important than graduating with my peers. As far as discomfort it has been greatly aided thus far by the Prednisone.

And I agree with what Rygon said. Perhaps at least try the drugs before deciding against them. I am fairly confident in assuming no one here wants to take any of this shit but it does seem to help. I don't know, everyone handles it differently. Just my .02

Good luck in whatever you decide to do and keep us updated!

-JD
 
Welcome fellow Aussie,

Your story is also very similar to mine but I opted to go with the Imuran, have been taking it for 3 weeks now. I had never been sick in my life before June 2009 then had the stomach pain and a laparotomy. Then had an abscess drained in Aug 2009 (apparently was caused by the first sugery). Since then you would never know I was sick. I have no outward symptoms of Crohn's what so ever. I never had any diarraea or vomiting. I dont have any pain, bloating, nothing but a pill cam showed inflamation and fissuring ulcers along with strictures which is why I opted for the meds. I dont follow any diet and can eat anything.
Just keep a close eye on you insides as you may be like me and feel fine and have no symptons but that doesnt mean the diet is helping the crohns.
 
Rose City, I believe you have made the right decision, graduation can wait, its best to get your health back on track and your obviously taking the correct steps to do so. Hopefully the meds can knock it back into remission for you. You got a bonus being young and fit mate. As Lance says, Live Strong.

Lulu! (great to see another Aussie here) thanks for your advise, and i absolutely agree. Im not completely relying on my diet and am in no way against the meds, but I felt that I should give it my all first since i seem to be doing well so far, before I get on the meds later on. I have an appointment this wed with my Gastronentorologist (sp?) and ill be booking in another colonoscopy to see how its all going. Hoping for the best.

Basketcase, thanks for the welcome! No i did mean fissures, anal fissures. What a pain in the butt! (pun not intended). They seem to come and go, but im getting quite frustrated with them. My doctor previously recommended Botox to allow the fissures to heal, so hopefully this Wednesday ill be able to book in the appointment. Has this treatment ever been used before ?
At the moment, i have had countless blood tests. I am also about to do two more tests, one which requires me to send my faeces to the U.S for DNA examination, and another is a urine test. Supposedly I also may have gut leakage as well, but these tests are requried to really get to know the working of my immune system and what/where is lacking. I'll post up the test names when I get home as I dont have them with me. I did research on the tests and they can seem quite benificial.
 
Hi 313! (can we have your name? I feel weird calling you a number!)

Welcome to the forum! I too have opted against the pharmaceuticals and am trying the "alternative" course right now - lots of probiotics and natural healers for the intestinal tract. I had a great 5 months, but now trying to come off the prednisone has been rough. I need to find something to kick this thing into remission.

I am not ready yet to give up on the alternatives. I am not sure why I am so hesitant and resistant to trying the pharmaceuticals! I need to do some soul searching to make sure I am not looking past the right options for my own situation.

Sounds like you have a good plan in place and are open to trying new things. Keep us posted and let us know how it's going. I would be curious to hear about your experience with LDN and if it works.

Good luck! - Amy
 
Hi 3132757
and welcome
can we have a name, I'll never remember those numbers, I always forget me PIN number at the bank!
Well done for a dx so quick, excellent, sorry don't know what bioresonance is?
Now for my 2 cents, as an old Crohnie
Just take care, whilst a healthy diet is admirable, and I'm sure it works for you, please don't become complacent with this disease, If you ignore it, it will jump up and bite you on the arse before you know it! Because it did with me and I became very ill, cos I neglected to take my meds, and ended up in hospital with an obstruction.
hope you get to go on LDN or some other meds.
and good luck, see you around the forum
Joan xxx



,
 
Sorry basketcase, I think you may have misunderstood me. I have already done a colonoscopy to which they did a biopsy and determined it was CD at a "moderate" level with 2x anal fissures, not strictures.

The further tests that I have mentioned previously are just extra tests to determine the real machinations of my immune system.

Ill be going to my specialist this Wed to book the second colonoscopy checkup to see how things are getting along. Im from Sydney, how about yourself ?

Hi Ame, yeah the number thing is off-putting, i actually couldnt register for over a week because they thought i was a spam account! lol. You can call me Fou, or Foui, nicknames ive grown up with.
Great to hear you are trying alternative treatments as well! True, coming off the meds will be tough, I have seen it myself with many other CD patients that are trying alternative treatments like myself, but they always come off first best. Have you looked into bioresonance ? Seems to be helping me. They did a double blind test on its efficiecy in treatinf CD with good results. Im not sure if its practiced in the US (mainly in germany and china) but its worth a look into i guess.

Keep me posted in what treatments you are taking or looking into.

F
 
Hi Fou! Bioresonance is not common here in the States, at least not that I have heard of. I am thinking abou tying accupuncture next as a complement to what I am alreayd doing. Heck, if someone told me chewing on tree bark would work, I would do it! - A
 
Hey Amy
hope you're ok hun?

have a chew on Roger's mushroom growing on his tree! lol xxxxx
 
Hi Joan! Thanks for your advise, true the last thing I want to become is complacent, thats why im doing regular colonoscopies and keeping up to date with tests and new treatments. Reading your signature its sounds like you have would have a lot of knowledge on this disease and its effects...will be looking forward to your comments and advise. I hope you are doing well.

Basketcase, yes the colonoscopy determined CD in terminal ileum and the fissures are from the big D. I'll get back to you tonight about what info ill be getting back from the tests. I dont want to tell you on the top of my head as i may be misleading. When i get home ill be sure to post it up.

F
 
Wow basketcase, you are going on one difficult journey mate. Whats you name by the way?

Are you following any type of diet or taking any treatments at the moment ?

Fou
 
Hey BC
sending you some crazy, I'm in a crazy drug fuelled hazy daze!! and where are you? Oz, US or UK?

You're welcome Fou, anytime, just shout! and I'm doing well on Pred, thanks
 
Hi all!!, thanks for the warm welcome :)

Amy,

What are you taking/trying right now for your condition ? Hows the success rate going ?

Fou
 
BC,

In regards to the tests that im having done at the results that it will produce, i think a direct extract off the website would explain it better than me:

"GI EffectsTM Stool Profiles are unlike any other stool analysis profile, going beyond the standard parameters for identifying gastrointestinal disorders.
GI EffectsTM use DNA analysis to identify microbiota with 100% accuracy including anaerobes, a previously immeasurable area of the gut environment."

If you look at the produced test report below, you can see that you get a detailed analysis of the bacteria's, fungi, parasites etc..and this can help in putting together a better picture of your GI system and its weaknesses and then how to focus treatments on certain areas. Its DNA analysis as well, so its not cheap, but as accurate as you can get.

http://www.diagnosticinsight.com.au...ects Stool/pdf_sample_2100GIEffects-Stool.pdf

http://www.diagnosticinsight.com.au/pages/testing/gi-stool-effects.php


Fou

As you can see
 
haha...No worries BC. Im just trying to gather all the info I can at this stage. Hopefully it will give me something to build on.

Fou
 
Hey Fou! Welcome to the forum. I have had fissures a number of times so I know how painful they can be. You will get lots of good advice and support here. It looks like you already have! :)
 

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