mild crohns and stopping medication

what tests have been run? have you had a colonoscopy nad/or upper endoscopy. either can be better diagnosed with tests. I had mild crohn's for year but was on meds which keep at sympoms at bay for 10 years except anemia. last 3 years not good and finally had surgery. However, looking back, being on meds gave me a long time of quality of life so my GI was right to treat it as crohn;s and treat it agressively. remember it is ultimately you who is in control, not the Doctor. good luck!

i'd say go with your "gut" feeling...if you're getting worse then stopping probably isn't the way to go...maybe get a 2nd opinion from another GI? felling better is often one of the hardest times for me because i start to feel invincible again and then overeat or eat something stupid or stop taking my meds and then hello...right back where i started. good luck to you!

I would suggest staying on your meds. If you do in fact have CD, it's a chronic condition that will need meds. Even though the symptoms are mild or gone for a while, it's still there doing damage you can't see. I stopped taking meds for a few years and had only minor symptoms. Until my bowel perforated and I required emergency surgery. It seemed to sneak up but had been building over time. I would also seek a second opinion or new GI with more experience, Mayo or similar clinic as was suggested

I agree that you should definately get a second (or third?) opinion to make sure.  I sure wouldn't want to take drugs if it ended up I didn't need to!  Yet, a lot of people here are mild and have done very well on low dose drugs with their Crohn's.  I'm not saying one way or the other on taking drugs or not, but I currently am not.  The only reason I am choosing this is that I found a Naturopath who has Crohn's and I chose to be treated by him for a year, and then see what a colonoscopy looks like and how the disease is doing.  I think you are smart to only do this with the approval of your doctor.  I would never suggest anyone stop any meds without a doctor watching over!

How is your food?  What are you eating?  I know that some docs say diet doesn't matter, but my diet has made a HUGE difference in my symtpoms, even before I was being treated.  Could something you are eating be causing some of your distress?

I also have a mild case of crohns. I went 8 years thinking I had IBS. Heck I had mild symptoms even for IBS! The general consensus was if I had crohns I would be 'sicker'.  Then I went thru a scare with a false positive HIV test. The infectious disease dr I was referred to ran follow up tests (DNA) and I was found to be false positive. He also ran Lupus and RA tests because I had weird rashes and other issues. He said at the time I needed to see a gastro dr because he strongly believed I had IBD and not IBS because the autoimmune diseases can confuse just the elisa blood test and the western blot. Of course i was in denial, just happy to hear I did not have HIV and thought..no if I had IBD I would have known by now. It has been 8 years..i would be sicker. Then in Ocotober came my first full fledged long term flare and I am still battling to get into remission. Luckily I have not had to be hospitalized and I am faring pretty well compared to alot of people who have this. I am also lucky according to my GI that more damage was not done to my colon. So I would definitely get another opinion if you are unsure and then if it is confirmed get on medication that works for maintenance.

I have had symptoms all my live and a “definitive” IBS diagnosis twice, 15 years apart. I went for a colonoscopy and when the doc pushed on my gut I got so much pain the doc said we have to figure this out. I had upper gi tract, colonoscopy, promethus 7, other blood work and at least one other xray type procedure. Started low dose Pentasa, was taken off the Pentasa. One test said I had CD. The next one said I did not (Promethus 7 which cost me like $1000). The next one said maybe. Finally I did the pill cam. The result was the doc showed me the pictures clear as day of the CD in the small bowel. This was the only way to 100% for sure diagnose me. I do not work for the pill cam company, I am not really happy with a 100% for sure diagnosis, but given I have it, I am thankful to know for sure and to start real treatment. I suggest you talk to your doc about the pill cam.
I know the frustration too well of no diagnosis, and wish you get this clarified quickly

Is Pentasa considered a maintenance drug? I've been on that for like 4 years and recently went off all steriods, quit humira as it just made me sicker, and was med free except for Pentasa for a good 6 months.  Then I finally found a job (after being laid off and getting married) and went into a flare!  I'm on Entocort again but hopefully only for a month becuase it's June and already I'm gaining weight!  I am 130 pounds and feel like an elephant!  So I'm not sure what the doc is go ing to do but I can't tolerate many of the crohns meds....and have been experiencing a lot of pain.

Yes Pentasa is a maintenance med. I am maintained on the sister med Asacol.

Roni- I did have the colonoscopy done but it was clear. The only thing that came back suspicious were the biopsies which showed suspicious inclonclusive cells or something that looked a bit funny. And my blood tests were positive, but that was for the gene marker. I'm not really sure what's going on in there! Since being off the meds i've started to have D once a month again and the pain i used to get in my ribcage has come back. My doctor says If i am feeling okay off the meds to stay off them, but if the symptoms have returned then to go back on them. I know that I should, I just seem to be convinced that it's coincedence or something?

Crohn's can operate on a microscopic level. It can also be in a location in your digestive tract where the scope didn't reach.

An "upper GI small bowel follow through" may show more and may also show why you're having pain up higher (rib cage area).

Kiki87 I always have pain in my upper right ribcage area. I believe mine is costchondritis related to my Crohns. But when I have a bad gut day, you can be assured that right side kills me. Hugs!

 

Hey everyone..I know I am replying to an old post but reading some of these reply's I had to register and reply. To the OP PLEASE PLEASE do not make some of these replies scare you. What you have is an imbalance of your gut flora. Stop feeding the bad guys and replenish your body with probiotics and eat well and you will be fine. For a year or two I was scared out of my brain reading some of these ppl on internet message boards. The anxiety was 1000 times worse than the condition. I'm truly sorry if I offend some people but if you are one that suffers with a bad intestinal ailment will HEAL and not continue to do damage. There is evidence in this by thousands of people who heal themselves but you will never hear that from mainstream docs or people who indentify themselves with a disease. look up SCD look up Dr Majid Ali. There will be a lot of backlash from ppl saying that SCD doesnt work for everyone, food doesn't change or alter the condtion ( this one is amazing!!).  It's BS! Eat the way your body was designed to eat and you will be fine. No meds..no surgeries.

And everone who thinks meds does anything for the condition if WRONG! They only mask the symptoms..And that is coming from the mainstream!  Just because YOU want to be on meds all your life and indentify with a disease doesnt mean that everyone fits in your catergory.

/end rant

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Post Edited By Moderator (Nanners) : 10/11/2011 7:45:57 PM (GMT-6)