mild crohns and stopping medication

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kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 6/10/2010 8:34 PM (GMT -7)   
Hey,
 
I was just wondering what peoples' views/opinions are on not taking medication for mild crohn's? I'm trialling being off mine at the moment (salofalk granules) and it's been 2 months since I stopped taking them. The reason I stopped was because my new GI believes I don't have crohns and that it's IBS. He suggested I trial 1 month off the meds and see how I go. He doesn't have the years of experience my previous and older GI has, and a lot of his patients, I'm told by my regular doctor feel the same way towards him. In the 2 months since being off the salofalk I've had dirrhoea once a month and my ribs are starting to hurt again on the right hand side, stomach feels a bit on edge every now and then, and I find myself only wanting to eat carbs, pumpkin and bananas. 
 
So my question is, would it be safe for me to continue not taking them? Or can it have long term effects even if I don't have any symptoms? I'm only hesitant to get back on them because now my way of thinking has now changed to think that I don't have crohn's and that it's IBS? Could it just be coincedenctal that the D has come back? My doctor says it's not. She believes I have crohn's like my old GI. 
 
 Not sure what to do!

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 6/10/2010 8:44 PM (GMT -7)   
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!
47 yrs old male married 2 teenage boys. 
  • Dianosed with CD 13 yrs ago-probably had it for a lot longer 
  • tried Asacol, Pentasa, Cimzia, Remicade, Predisone
  • Had blockage in 2009-hospitalized for 6 days. 
  • Had surgery in Jan, 2010 to remove terminal illium-13 inches total of small and large. found 3 strictures.
  • had  nasty bleed out from surgery requiring another hospital stay 
  • Tried 6MP after surgery lost more weight. 
  • Had follow up colonoscopy- Crohn's is back already
  • Now restarting Remicade.

Are we having fun yet?


kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 6/10/2010 8:48 PM (GMT -7)   
thanks for the reply. i've had blood tests, colonoscopy, gastroscopy, white cell scan, but that's it. the new Gi suggested i could have more tests done but i don''t really want to, plus he doesn't think i need to. my biopisies were somewhat inconclusive with suspicious cells and blood tests were positive. my old gi i saw for 2 years, this guy i have seen twice in about 6 months. i know they can't reach everywhere that's inside you so it can be hard to find what's really going on!

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/10/2010 10:18 PM (GMT -7)   
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!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 6/10/2010 10:18 PM (GMT -7)   
you should get a good pathologist to look at your slides. think about going to a good university or possibly mayo. it would be a shame to take meds for a disease you possibly don't have
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc


Dave123
Regular Member


Date Joined Feb 2005
Total Posts : 222
   Posted 6/11/2010 5:06 AM (GMT -7)   
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

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 6/11/2010 5:13 AM (GMT -7)   
I have mild to moderate CD. At my last visit to my GI I noted that I felt lucky to have gone 40 years with no surgeries or major complications and (since diagnosis and treatment) very tolerable low level disease activity. At my last scope he had to look hard to find just one small ulceration in the cecum. He said, "Well, that's because you took your meds all those years." Simple truth: untreated CD continues to do more damage at the microscopic cell level; treated CD with the right meds for you does less. If you are not having any difficulties with a relatively low level med like the one you are on, why in the world would you tempt fate?

newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 6/11/2010 7:08 AM (GMT -7)   

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?


newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
Crohn's diagnosed 11/12/09
Cytomel and Levoxyl for thyroid.  Supplements for all else as per my ND.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/11/2010 11:18 AM (GMT -7)   
Well I am one of the biggest proponents of maintenance meds. I have had a mild case of Crohns for nearly 35 years, and once enjoyed a nearly 20 year remission med free. Would I do it again, HECK NO!! My remission ended with 2 resections within 3 years and many years to get back into remission. But...I think it might be best if you asked for a Pill cam test be done to see if you have CD or not, then if confirmed GET ON MEDS, and stay on them. JMHO And hugs!
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"*

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/11/2010 11:37 AM (GMT -7)   
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.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 6/11/2010 7:41 PM (GMT -7)   
thanks so much for all your responses! my diet is under control. i have fructose malabsorption but i am very careful with handling that. it just seems a bit too coincidental that once i stopped taking the meds, the D came back, as has the rib cage pain. i think i will try to see a new GI. i just don't know if there is any point having more tests done? anyway i will see what is said. might start back on the medication soon, just incase! i don't think i will ever get a definite answer!

DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/12/2010 5:02 AM (GMT -7)   
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
Definative diagnosis June 5 2010, 25 years with syptoms, Kapidex 60mg, Prednisone starting at 40 mg, Pentasa 4,000 mg, Amitripyline 10 mg, SCD


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/12/2010 6:27 AM (GMT -7)   
Kiki the pill cam test is one test that has been found to find Crohns when other tests were inconclusive. It shows Crohns in the small bowel where the scopes can't reach. I would give it a shot, it might finally provide you some answers. 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"*

Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 6/15/2010 2:05 PM (GMT -7)   
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.
Jennifer
Diagnosed Crohns 1/06
CD of Terminal Ileum
Taking Pentasa. Adverse reactions to Remicade. B12 Injections.  Tried Humira, had adverse reactions as well.  Trying to figure out what's next!

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 6/15/2010 6:21 PM (GMT -7)   
I wouldn't stop the meds until you know for sure that you don't have CD.

If you had a colonscopy, didn't it show CD? Did you have high levels of inflammation markers in your blood work?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/16/2010 6:07 AM (GMT -7)   
Yes Pentasa is a maintenance med. I am maintained on the sister med Asacol.
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"*

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 6/16/2010 6:47 AM (GMT -7)   

I would ask for the capsule endoscopy (pill cam) as well.  I went for 8 yrs before they diagnosed me and had every test the GI could possibly do, twice, including removing my gallbladder.  Colonoscopies did not show anything.  All they could see on CT scans, etc. was some fluid in my pelvic region (so I also had surgeries for endometriosis to see if that was causing my pain).  I was told to see another GI for a second opinion.  I was told it could be IBS or all in my head.  I went to see another GI, he did the capsule endoscopy and found ulcers in my terminal illeum.  He also did the Promethius test and it showed UC (so my original diagnosis was indeterminate colitis, as I had symptoms of both Crohn's and UC).  He started treating me with Remicade, which saved me from having to be hospitalized and tube fed and ended up putting me in remission. 

Over the years, I've noticed that my diagnosis has changed to Crohn's.  When I was trying to get into the clinical trial for Cimzia a few years back, the clinical trial dr. almost didn't let me in the trial because he said he doubted I even had Crohn's, since my colonoscopies had never shown anything and because I don't have D.  I'm on my third GI, who has Crohn's himself, and he doesn't doubt I have it.  So, it takes the right dr. and the right test.   


Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 6/17/2010 12:20 AM (GMT -7)   
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?

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 6/17/2010 2:03 PM (GMT -7)   
Another one here who who didn't listen to her body...went into a remission period and a denial period...wanted the think the dx was false...I am not 100% sure if maintenance meds would have prevented everything, but I do believe that I would be working now...I had an atypical presentation too...now not only do I have the issues with the GI portion of Crohn's but I have the inflamatory Arthritis and PSC (Primary Sclerosing Colangitis/Liver issues) as well...not sure if I ever will see remission again...

Please don't tempt fate...if you are not feeling well...that is your body telling you LOUDLY that something is not right...I am hoping nothing but the best for you...
"The earth laughs in flowers"


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 6/17/2010 8:25 PM (GMT -7)   
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
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 6/18/2010 12:36 AM (GMT -7)   
yeh i know crohn's can be very hard to find. i think i'm worried that if i have the pill cam and nothing shows up on that either that i will feel like all of this has just been in my head? is it normal for crohn's to not show up on these tests? would it mean that i don't have it if it doesn't come up on the pill cam? can crohns cause rib cage soreness? my old GI mentioned something to me about costochondritis and how that can be associated with crohn's, which causes sore ribs. i don't think this is all IBS, or maybe it is? would someone with IBS have suspiscious biopsies?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/18/2010 6:12 AM (GMT -7)   
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!
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"*

kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 6/18/2010 7:21 PM (GMT -7)   
mine is on the right side too! sometimes it's higher and at other times it's lower. i seem to also be getting little pains in my knuckles and fingers sometimes, they come and go.

livingwell249
Regular Member


Date Joined Oct 2011
Total Posts : 127
   Posted 10/11/2011 5:52 PM (GMT -7)   
 
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
 
4. No posts that attack, insult, "flame", defame, or abuse members or non-members.   Respect other members of the community and don’t belittle, make fun off, or insult another member or non-member.  Decisions about health and well-being are highly personal, individual choices.  "Flaming" and insults, however, will not be tolerated. Agree to disagree. This applies to both the forums and chat.

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


juliet
Regular Member


Date Joined Aug 2006
Total Posts : 81
   Posted 10/12/2011 6:27 AM (GMT -7)   
Nope. Just because the pillcam doesn't "see" anything doesn't mean you don't have Crohn's. It's still not conclusive. Your disease could be on a microscopic level and the camera may not catch that. Biopsies can confirm for sure. Also, the double or single balloon endoscopies can reach far enough to see all of your intestines, etc. That's the only way they were able to find mine after 5 years of unexplained GI bleeding and every other test under the sun.

Good luck to you. Be persistent and get the testing you need. I wouldn't ever stop meds if you were feeling awful without getting a second opinion.
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