Chrone's Disease - Coming Out Of The Shell...

What Do You Think Causes Chrone's?
0
Junk Food - 0.0%
3
Stress - 20.0%
1
General Unwell-Being - 6.7%
4
Randomness... - 26.7%
5
DNA? - 33.3%
2
The Fact It Is In The Family? - 13.3%

 
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Kel776
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/22/2008 12:05 PM (GMT -7)   
Hello,
I have chrones disease have had it since i was 14 am 18 now. have had 2 flare ups!
i refuse to take my medication because ever since i left skool i wanted to join the royal navy but they woodnt let me because of the condition i have.
BUT...
i have been talking to my specialist and he says if i come off my medication and wait for a year to let it clear he is goinng to write me a letter officialy to the medical officer of the royal navy!
so hopefully in november i willl be able to join the navy and get on with my life...
just to let everyone know you can do wat you want if you put your mind to it.
this is the first time i have ever spoken out about my chrones disease because i refused to let my self and my friends know that i hace it! but i have grown up and realise that this is going to be a problem for me but i have to deal with it!.
Many thanks if you read this.
Kelsey Sewell.
:-)  

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/22/2008 12:22 PM (GMT -7)   
Well Kelsey I hope you stay healthy enough to join the military. But in my honest opinion that is not going to happen if you aren't taking some kind of maintenance medication. You may be fine for a short while, but Crohns is a chronic and incurable illness and will always return. Inflammation will return at some time and you will be sick again.

I enjoyed a 20 year remission at one time unmedicated it ended with an emergency resection due to a complete obstruction. All the while I was in remission I seemed to forget I had Crohns Disease, but Crohns never forgot me, it was in there quietly percolating away and doing the damage that could have maybe been prevented if I would have taken some kind of medication to keep the inflammation in check and paid closer attention to my diet. I wish you luck!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/22/2008 1:20 PM (GMT -7)   
I couldn't vote in your poll because it's basically a combination of things..one being, a person has to be predisposed to getting IBD (genetics) and 2 being there is then a trigger involved which is suspected to be environmental...they do know that stress, fast-foods, processed foods/beverages can all very well exacerbate symptoms, but that again may be different from being actual triggers, diet has not been ruled out as a trigger for IBD, smoking (including second-hand smoke) is actually one KNOWN trigger for crohn's (yet the carbon monoxide from smoking is known to benefit UC as it decreases/keeps at bay, the inflammation in the colon specifically), that said, there is still no guarantee that smoking for a UCer will put them into remission and that not likely every single CD will have their CD triggered by smoking or second-hand smoke.

More needs to be learned, however it is known that probiotics (a good one) taken daily and indefinitely can certainly benefit IBDers since we all tend to have bacterial over-growth which exacerbates our symptoms as well.

I'm either allergic or non-responsive to traditional oral RX used for IBD but thankfully I've found a good combination of natural things that have certainly helped me (not full remission, but I'll take what I can get given I have some special circumstances involved with my crohn's)...I use bee propolis (natural anti-inflammatory), omegas 3-6-9, fibre supplements (as strongly suggested by my GI) and a probiotic called primadophilus reuteri made by natures way which has guaranteed intestinal release...I also take my B12, vitamins, C-Calcium ascorbate and vitamin A.

I've altered my diet (no junk/processed food/beverages) and I exercise with weights and cardio regularly.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


yellowroseoftexas
Regular Member


Date Joined Jun 2007
Total Posts : 45
   Posted 8/22/2008 2:11 PM (GMT -7)   

Hi Kelsey!

It is great to meet someone else who has decided to take the bull by the horns so to speak!  I am not on meds either.  I haven't not forgotten my disease, wouldn't be able to if I tried, but respect my body and what I put in it!  I believe you can do this, and I really hope it works out for you.

When i told people here that I wasn't taking meds I was told the same story.  Don't let it worry you.  You know what is right for you.  A maintenance med does nothing but mask a sympton that will rear its ugly head.  With no meds you are able to know what is happening with and to your body with every bite and step and stress in your life.  You can never live your life like you don't have crohn's, to do that will bring trouble!  but i say, Hurray for you!  Like you said, you can do it if you put your mind to it.

All the best!

Amy


 
Dx CD Sept 06
no surgeries
no meds - codine infrequently
Mom of 4, Wife of 1, Daughter of the King
 
Real knowledge is to know the extent of one's ignorance
 


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 8/22/2008 2:19 PM (GMT -7)   
Kelsey,

Keep your head up! I came down with Crohn's when I was an Intelligence Officer in the US Navy. It'll be tough but you can manage. I do have a few things for you to think about though. Try to stay off of a ship. I'm not sure how long the Royal Navy deployments are, but for the US Navy our deployments on a ship are between 6-10 months. You should try to avoid this as much as possible because if you flare you will become more of a liability than an asset.

Try to find a job in the Navy where you can be shore based, OR if you go overseas, make sure you are next to a major medical facility. You can definitely serve in the Navy, just be realistic in job choices. Take care of yourself and stay optimistic! Drive, optimism, and the right attitude can get you far in life! Keep us updated on your progress and if you have any questions feel free to email me at: the address in my profile.

-Emma

Post Edited By Moderator (MMMNAVY) : 8/23/2008 6:00:38 AM (GMT-6)


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 8/22/2008 2:20 PM (GMT -7)   
Nanners 20 years remission is awesome!

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis (unconfirmed)
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/22/2008 3:18 PM (GMT -7)   

Yes LondonRed it was great, I miss those days, but it ended ugly unfortunately.  Kelsey, I hope I didn't make you think that you couldn't do what you set your mind too, because I believe you can.  I just want you to always remember that you have a chronic illness.  I just want to make sure you do all you can to keep yourself healthy.  PB4 gave some great tips to do it naturally.  I think if you are cautious with your diet, get proper rest, and keep your stress levels down you should do well.  But I still personally believe you should take some kind of maintenance med to keep the inflammation down.  I just don't want you to totally ignore your disease and have a bad end to your remission like I did.  

I have been able to accomplish much in my life even with Crohns.  I have been at the same job for almost 19 years, been married, have 3 grown daughters and 5 grandkids.  So you too can have a life with Crohns, but just be sure to take care of yourself too.  ((HUGS))


Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 8/22/2008 5:09 PM (GMT -7)   
yellowrosesofttexas,

Just to comment on what you said, I too respect my body and would like to NOT take any meds (tried that) and unfortunately that didn't work for me.

I am on Remicade and tapering off the prednisone b/c I have no choice. I tried avoiding it but my disease was too active and wouldn't respond to anything else. There are different levels of Crohn's and I'M GLAD that no meds work for you, but it doesn't work for me and it doesn't work for a lot of people, so just keep that in mind. It doesn't mean we don't respect our bodies. I'm an organic/wheatgrass/crazy freak about what I put in my body. Some of us don't have a choice, and it's unfortunate, but it is what it is. I am also crazy positive and do not let this disease run my life.

-Emma
turboemma.blogspot.com/


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/22/2008 5:47 PM (GMT -7)   
Hi I am glad you are speaking out but I was a little concerned for you when you said that you refuse to believe that you have crohn's. I am not on meds right now but I know they are there if I get sick again. I had severe crohn's disease and as mentioned some people have mild to moderate as well. I was very sick before my resection and did take meds but they weren't helping. I think that was because the area removed was so bad. I hope things work out for you .Also keeping a check on your blood levels might help to let you know how things are going on inside. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Kel776
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/22/2008 11:35 PM (GMT -7)   
Hello,
Thanks everyone... Nanners in reply to your comments i appreciate the fact that i should be on some sort of meds but in order for me to join the forces i have to be off meds... a killer decision i know but it is wat i want to do and i am not going to let my chrones disease stop it lol. thank you everyone for your comments i hope we can all stay in touch on this forum and would be good to get some tips of the chrones disease veterans!!. i will keep you all updated on here about my journey towards the forces hehe! if you want to talk to me which wood be much appreciated then please add my email on msn or just email me haha! the email address is  i also have facebook which is , I Have Bebo which is .. Thats about it haha! thank you again for all your comments and i hope i can get some good tips off everybody.
________________________________________________________________________
Please put your personal contact info in your profile, not in the text of your post.

Post Edited By Moderator (MMMNAVY) : 8/23/2008 6:07:53 AM (GMT-6)


yellowroseoftexas
Regular Member


Date Joined Jun 2007
Total Posts : 45
   Posted 8/23/2008 4:03 AM (GMT -7)   

I don't recommend anyone come off any drugs they are taking.  I recommend everyone become more knowledgable about the natural course of the disease.  The natural ebbs and flos.  Instead of talking about this med and how it effects you, from my point of view, it would be great to talk about how you deal with things without meds, but I am a small fish in a big pond.

I don't want anyone to think I am putting them down for being on meds, critizing them for being on meds.  I know that for the huge majority, now that they are on them, getting off them would be a huge step.  I know that for a huge majority the meds help with the side effects of this disease and have a more normal life and that is great!

I definatley don't think I am better than anyone for not being on meds.  I do know that from several people on this site - and I post very infrequently because of this - I get very defensive feedback.  Please don't take me that way - I only want what is best.  And most of you would agree that being able to cope with this disease without meds would be better and that the meds themselves come with some pretty nasty side effects.

I also get the assumption that because I am not on meds that my CD must be mild.  I can tell you that at diagnonsis it was 70% of my small intestine.  My last barium (5 months ago) now shows that it is only in the ileum.  That is with no meds from the GI or GP.  I suffer some similar things to most people here and would like to be welcomed onto this site regardless of whether I take the meds or not and be able to put across the point of view that meds are not strictly necessary, I am living proof of that.  I am more than willing to listen to you say they are and respect your point of view.

My signature will now not load because it references something I am not allowed to say here.  I will have to change it again.

crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/23/2008 7:35 AM (GMT -7)   
just thought i would say that i think it's cool cause my name is kelsey too and i'm also 18, weird huh?
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


Kel776
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/23/2008 7:37 AM (GMT -7)   
yer haha! male or female? im male!

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 8/23/2008 10:39 AM (GMT -7)   
I have mild crohn's and was pretty much drug free for about 6 1/2 years. But it showed its ugly self back in April and I have been having problems since. I say if you can be drug free and feel great, then more power to ya. But don't look forward to being drug free your whole life. I'm very lucky that I have CD very mild compared to a lot of people with it. I can live a normal life for the most part.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 10mg this week
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin twice a day
                           Cipro
No Surgeries
 


Kel776
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/23/2008 12:30 PM (GMT -7)   
Thank you for your comment LBJ, i will keep that all in mind because i know what i am doing is risking my body very badly!
my specialist says that it is fair enough what i am doing and that i should have self control over MY Disease. He says i am old enough now to decide if i want to go on meds or not because like he said.... he cant force me!.
I really appreciate all the comments everyone please keep them coming thanks!!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/23/2008 1:35 PM (GMT -7)   
You know, just because you're not taking the oral RX used to treat CD doesn't guarantee you're risking your body very badly...there are plenty like myself that cannot even tolerate the RX meds, either allergic or non-responsive, besides which those drugs are causing many other issues too, they are not without risk, look at the side effects alone...at least with the natural stuff I take I have no negative side effects and I at least respond to them not like the RX...it's actually a blessing in diguise as far as I'm concerned, my hair isn't falling out, my bones and joints aren't being sped up in the going to crap process either.

Those RX that many are taking may very well give some of them their lives somewhat back, but it's not without risk.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/23/2008 10:42 PM (GMT -7)   
If you can control your inflammation to the point where you feel no gut pain, no slight knot in the gut even, then you can be off meds. It is much better than taking meds if you can manage it. It will probably take a radical revision of your diet and a collection of supplements, but the meds have their side effects. That said, if the gut is not completely controlled, you run the risk of many complications. GERDS, rashes, eye irritation, esophagitis, arthritis, urethritis, sinus headache, all appear to be complications from Crohn's. Many in this forum have had these complications even with medication, if the gut is not quiet. Myself, I am trying the no meds route, but I don't know how many people would follow my diet and supplement regime.

Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 8/23/2008 11:16 PM (GMT -7)   
As has been said, its not so simple as DNA or lifestyle choices.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 8/24/2008 11:00 AM (GMT -7)   
I couldn't vote in your poll because I don't think any of these things cause crohns. I think crohns like most immune related or autoimmune illnesses are caused by a lack of evolution of our immune systems. Until western influences started creeping into less developed nations you didn't see very many auto immune illnesses in these places. Even in areas of western nations where children have grown up in farms and haven't received the immunizations that we do, these kids don't get allergies, asthma and autoimmune illnesses as much as the rest of us. They are exposed to germs and their immune systems are allowed to do their jobs. We don't even let kids get chicken pox anymore.


As far as being on medication or not I feel that this is a personal choice. I made the decision to start remicade and 6mp in February 2007. My crohns is considered to be mild and my pill cam last month showed no signs of active crohns. I don't get d the way most people do. Maybe once a week I'll have a bout of d that will last an hour or so and them I'm fine. I get pain and I vomit every so often now. I chose the meds when I went into a flare up set off by antibiotics. I threw up everything I ate or drank and had d every 20 minutes. Had I not gone on the drugs this would have passed eventually as I suffered these symptons a few times a year for almost 30 years before I was diagnosed. When your main sympton is pain and puke most doctors don't think crohns. I don't have the discipline to regulate my diet so the option of drugs that could make me feel better fast sounded good to me. My gi has suggested going off of the 6mp because of the recent studies but I choose to stay on it because no one can guarantee that it isn't the thing keeping my crohns in check. If you can keep your illness in check through diet and alternative treatments good for you.
Jodi

Remicade and 6MP


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/24/2008 11:29 AM (GMT -7)   
Forgot about the Cause of it question. I don't think that you can point at any one factor, but some are more suspicious than others. The problem is known to be caused by the immune system becoming sensitized to normal gut bacteria as a result of gut permeability being raised to the point where bacteria pass through the mucous membrane and contact the underlying tissue. Known causes of gut permeability are gut infections, stress, NSAIDS, and alcohol. With that list, you have to ask why the entire population is not stricken with Crohn's. I would guess that most do not react as strongly to the causes of gut permeability. There are indications that many more people have some reaction to gut permeability than the Crohn's stats indicate. It may be that it requires a "perfect storm" of cause factors to trigger the problem. A combination of stress, and other permeability inducing factors in the presence of bacteria that make the problem worse and the lack of beneficial bacteria. Antibiotics may be a factor - now there's a poll for us! Diet may also contribute. Some dietary lectins are known to damage the gut surface and may provide an entry for gut infection.

crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/24/2008 5:19 PM (GMT -7)   
i am a female 18 year old kelsey! but still, that's funny that someone my age with the same name with be on here with crohn's!
Dx'd with Crohn's December 2004
Previous Meds: 6MP, flagyl, cipro, cortisone enemas, prednisone, remicade (3 1/2 years).
Currently Meds: Humira 40mg/week, prednisone again 30mg/day and tapering, augmentin, proctofoam enemas, percoset as needed
Supplements: Iron, B-12, B-6, Calcium, Vitamin C, soon to try bee propolis


Kel776
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/25/2008 7:31 AM (GMT -7)   
i know haha!!

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 8/25/2008 8:17 PM (GMT -7)   
Why do I get so so irritated when people spell Crohn's incorrectly?

I don't know why it gets to me so much!

Kel776
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/26/2008 12:58 AM (GMT -7)   
Thats how i thought you spelt it.... never mind eh!
And maybe you get so irritated because you are unusually addicted to the disease...
Like a crohns nerd haha!
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