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beth10
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/20/2010 11:10 PM (GMT -7)   
I'm new to this site as I was diagnosed this week with Crohn's.

I have been living out of the US for the past 2 and a half years, and came home in june for the first time in over a year. In the last 10 months I have experienced what I guess would be Crohn's symptoms on a few occasions (and lasting no more than a day or so) and somehow assumed I had IBS (my mother's side of the family has IBS but I have no family history of IBD/ Crohn's).

A few weeks ago I was very stressed and my mom encouraged me (ok, begged me) to go see her doc because I was having abdominal pain and going to the bathroom more often. Her doctor referred me to a GI and I was encouraged to do a colonoscopy. This was all very surprising to me, as I am 26, have no insurance, and was therefore very hesitant to do any further doctor's visits/ exams.

Well, I agreed to do the Colonoscopy and the GI informed me after the procedure that things appeared to be ok, with the exception of some very mild inflammation on the right side of my large intesting. He said that it was possible UC but very mild and might not even require medication. He also explained that he had taken other biopsies and would let me know of these results.

A week later, his office called me requesting that I undergo 2 MRI's (abdominal and pelvic), explaining that the biopsies confirmed IBD. Unfortunately, I couldn't afford to do the MRI's without insurance so they went ahead and scheduled me for a follow up with the doc to discuss my options. At the appointment I was literally blown away. He told me that the biopsy results indicated that it was Crohn's, and although my large intestine appeared normal, the pathology results showed that it was affecting my entire colon. From what I understand this is not typical crohn's, which tends to be in the small intestine.

I've now been told that not taking medication is not an option. My doctor prescribed me APRISO, which I am unable to take because without insurance it costs nearly $600/ month. I am leaving on wednesday to go back to Europe and explained to the doctor that I don't understand why I have to take it if I feel fine, and he explained the even if I feel fine, the inflammation is there, and that if I don't do anything about it, things could get much worse. He told me that the equivalent drug where I am living is called CLAVERSAL, and urged me to find a GI who can prescribe it to me when I return.

How often do people with Crohn's need to undergo colonoscopys? My doc said that it depends, but this is stressful for me as I am now unable to find health insurance in the US.

Can anyone give me any insight/ suggestions? I am really confused... not to mention scared about the idea of it getting worse while living abroad...

Most importantly: Should I take the medication if I feel fine and have never had a major "flare up?"

Thank you to anyone who could help...

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/21/2010 12:45 AM (GMT -7)   
Your doctor is absolutely correct in that you may feel fine but that does not mean the damage is not being done. Remember, you felt bad enough to go to the doctor in the first place so feeling fine is not really accurate. Crohn's disease affects the whole G.I. tract and is most common in the terminal illeum but that does not mean it can't be in the colon. Many people here have Crohn's colitis which is basically crohn's located mainly in the colon and rectal areas. I am not familiar with claversal but there are some other medications that you may be able to go on that are less expensive. There are also many financial programs offered by drug companies that help with the copays or financial assistance for those without insurance. Being that you are in Europe, most of the countries have socialized medicine. Are you able to receive any care through their systems or do you have to pay all services upfront? Depending on the country you are in there is very good care offered over there. There are many members on this board that live in Europe and can help you. Please do not take this lightly and not treat it. It sounds like your disease is still mild and that is a good thing but if left untreated it could become moderate to severe.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 8/21/2010 4:37 AM (GMT -7)   
I agree, do not leave this untreated! When you feel 'bad' it could be too late to control it:(
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Missmissy
Regular Member


Date Joined Oct 2006
Total Posts : 237
   Posted 8/21/2010 6:04 AM (GMT -7)   
Sorry for your troubles with your disease! Please, as the others have mentioned, don't let it go untreated. I thought I was fine, and went off my meds, and am now having to consider going on Imuran, which is stronger, and has more side effects than the Asacol that I was supposed to be taking all along. I have had to increase my dose to four 400 mg. tablets three times a day. That's a lot of pills, and is very expensive if you had no insurance. I could have avoided this had I listened to the doctor and the wise people that are here. I wish you the very best. Take care of yourself.
Crohn's Disease, Fibromyalgia, Psoriatic Arthritis
1200 mg. Asacol 3 times daily for Crohn's
I'm not going to take this lying down.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/21/2010 7:24 AM (GMT -7)   
Well unfortunately I am going to tell you the samething as the above. When left untreated, even if you think you feel fine, Crohns is still in there doing its damage on a microscopic level without you even knowing it until BAM one day you are in a world of hurt and possibly having to have surgery. There are some who will tell you if you do this diet or take this supplement you will be okay. But that is NOT true. In order to adequately treat your Crohns you must use diet and meds to keep it under control. I learned that lesson the hard way, and I ended up having to have emergency surgery to remove nearly a foot of intestine. And I will be honest, life has not been the same since. I no longer digest things as well, and the things I can no longer eat, has grown. So please do find some way to get treatment, or things could get really ugly for you. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 8/21/2010 11:30 AM (GMT -7)   
I agree with all the other posters. Crohn's is nothing to play around with. My husband was originally diagnosed with a mild form of UC, and put on some very light medication for UC. Everything was fine for about 5 years, and then, BAM, he was hospitalized with a c-diff infection and a very serious case of Crohn's inflammation of the colon. He was in the hospital for 45 days, and he has several setbacks (such as osteopenia from steroid use because of that incident). It is my strong belief that if he had been diagnosed with Crohn's and not with UC, he'd have been on stronger medication that would have prevented his hospitalization.

Crohn's is doing damage even if you don't feel it. Please listen to the doc, and get treatment.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission

beth10
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/21/2010 12:00 PM (GMT -7)   
Thank you all SO much for your replies. I started Apriso this morning (my doc gave me a 10 day trial) and will find a GI to prescribe me Claversal (the mesalamine drug used in Italy).

One more thing... Since I wan't able to do the MRI, we don't know if my small intestine is affected. The doc told me that during the colonoscopy you can only see a small part of the small intestine.

So although I was diagnosed with Crohn's, it sounds like the medicine I'm using is most commonly used for UC. Does this mean that I could be at risk if my small intestine IS in fact affected, since I wasn't prescribed a different medicine for Crohn's?

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 8/21/2010 3:19 PM (GMT -7)   
I think they would have seen enough of the small intestine to have picked up on any problems. My disease is
there and in the ascending colon, and they always know whats going on. Also, it is more common to have the
disease in the small intestine, but there's a lot of sufferers with it in the colon, so you aren't alone.

I wish you lots of luck and hoping you disease remains mild.

BYW welcome!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/21/2010 11:32 PM (GMT -7)   
Maybe you could ask your doctor, or one you find in Italy, about lower cost meds. Unfortunately, a lot of meds are expensive, but perhaps they could find something to try that costs you less.

Aside from that, I do agree that you should be on medicine, even if you feel "fine" now. You might find that after being on medicine, you feel better than now, and look back and see that you weren't doing as well as you thought you were.

I wish you the best! Glad you found HW, but always sad to have another member join the crohn's family.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 8/22/2010 1:42 AM (GMT -7)   
cant you just go into an Italian hospital, say your there illegaly and get free care? oh wait only WE do that, my bad...

but seriously, you should maybe see a gi there if you can find one.

kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 8/22/2010 6:43 AM (GMT -7)   
When you're back in Italy, are you able to hook up with a GI there and do the rest of the tests to confirm whether or not Crohn's is in your small intestine or not? (the MRI, etc.).

Since you don't have insurance, it sounds like it may actually be better for you to be abroad becuase from what I understand about other countries' medical systems, they aren't nearly as difficult as the US's, and drugs are much more affordable.
Ulcerative Colitis, dx in 1998 at age 18
Allergic to Sulfasalzine
4 Apriso pills 1x daily
Daily Multivitamin
Living with gallstones, but no surgery unless they get active again
Slightly anemic, so I also take an iron supplement daily
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