Mild crohns?? Some questions

Are your GI doctors IBD specialists?

TwinsRock, even tho mild, untreated Crohn's is an invitation to disaster. I've had Crohn's for 30+ years, mild, but when it decided to make itself known big time I ended up w/not just an obstruction but they thought also a perforation. I was not just bloated, nauseous and in PAIN, I was vomiting what tasted and smelled like feces. I ended up "donating" 18" of the mid-ileum to the "pathologist's plate". I was then blessed w/a 20 year remission before it recurred. And have been blessed w/continued remission and symptomatic remission for most of the last 13 years - THANKS TO Imuran and Pentasa. (Imuran is a close relative of 6MP).

I've almost never had a problem w/diarrhea. Constipation has always been my problem w/Crohn's.


Get on a good med that works for you ASAP. That "mild" inflammation does a lot of damage over time and when inflammation becomes scar tissue which it eventually does medication is NOT going to relieve a stricture or obstruction.

Crohnie Too- Thanks so much for your response. Were you on any meds at the time you "donated" part of your ileum? If I could go another 20 years without medication and still have just mild crohns that would be great.

I'm only 41 and I really am scared to be on this stuff for life. It does seem to have a pretty lousy side effect profile too. A lot of people seem to get pancreatitis from it. Like I said though, I will likely give this stuff a try. It just scares me half to death!! :(

Barbie in the woods- it looks like you are doing well and med free! I have been trying to do what you do, watch gluten, no processed foods, etc. Wish I could eat lots of fruits and veggies but on low residue diet.

Thanks for the responses. Keep them coming...

My Crohn's first struck in mid-1976 and was one continuous flare until my full obstruction and resection in early 1978. During that time the only medication I was offered was asulfadine which I couldn't tolerate. It made me sicker than the Crohn's.

I've had absolutely no problems w/the Imuran at all. We run a blood draw every 3 months to check for any effects on liver, WBCs and pancreas. I've had no problems w/the Pentasa either. Except the mumbling and grumbling about have to take so darn many of them. 4 250 mg 4 x a day or 2 500 mg 4 x a day. The Imuran are 1 1/2 tiny little pills 1 x daily odd days and 2 tiny little pills 1 x daily even days

CrohnieToo-  I'm starting to think you are right.  I am in a "symptomatic remission" ( sort of) by each diagnostic tests shows "bowel wall thickening", "mild inflammation", etc.  I have enjoyed 10 years without meds and without the nasty side effects.

My GI doc called me today and shocked me and said he wants me to go straight to the biologics!!  I have finally worked up the nerve ( only took 10 years) to start the 6mp.  He said that there are newer studies that show that they work quicker than the other agents and go right to the source of inflammation.  In his words, the biologics are like a "smart bomb", it knows exactly where to go in the body to get the job done. 

I have to say I've been pretty depressed about this whole situation.  I think if I were having a lot of diareaha-bleeding and my life was negatively impacted by this disease, it would be different.  It would be a no brainer to go on the meds.  I just lost one of my close friends to cancer and both of my parents just passed recently too.  I can't help but feel like these meds could take my life.

Thanks for all of your comments. It is so helpful to "talk" to people that understand the dielemas us IBD'ers face.

Also, GI doc did give me a choice between the two, biologics or 6mp.  For strictures, what do you all think?

Ok I am going to chime in here too. Like CrohnieToo I have had Crohns for nearly 36 years. I believe if I am not mistaken we were diagnosed the same year. The only difference between her and I is that she had surgery when first diagnosed and then enjoyed a 20 year remission, I had a 20 year remission first that ended with emergency surgery due to complete obstruction. Why did this obstruction happen? Well I thought I knew it all and didn't need to take meds either. While I was busy getting on with my life, totally ignoring that I had Crohns (mild case too), the Crohns was still in there doing its damage on a microscopic level without me even knowing it. What happened is I would have inflammation repeatedly that would heal. Each time you have inflammation and it heals it creates some scar tissue. Eventually that scar tissue gets so thick that it blocks the bowel.

I also had a GI doc tell me after the first resection I no longer needed to take meds. So I didn't. Guess what I had to have another surgery only 3 years later. So now I am a good girl and take my meds at all times. I am lucky and I am maintained on only Asacol. If needed I would go onto 6mp (sister med to Imuran) if I had too.

We have so many members who have learned the hard way what no meds can do to you. In my personal opinion diet alone, or supplements alone are NOT enough. We have a chronic and incurable bowel disease that really must be treated at all times. And no offense to Babeinthewoods, look at his signature and look at how long he has had the disease. He doesn't know what damage he is doing to himself not treating his disease. He might be like me and CrohnieToo and enjoy a long remission, but I highly suspect that one day, he will get a wake up call too. I have seen it happen too many times on this very forum. We must treat this disease with a combination of medications, diet and supplements. Good luck to you! JMHO

Babeinthewoods, look at his signature and look at how long he has had the disease. He doesn't know what damage he is doing to himself not treating his disease. He might be like me and CrohnieToo and enjoy a long remission, but I highly suspect that one day, he will get a wake up call too. I have seen it happen too many times on this very forum. We must treat this disease with a combination of medications, diet and supplements. Good luck to you! JMHO

There are many IBDers who no longer take meds but you don't hear about them because they no longer see the need to participate in the forum. Most of the advice on this Crohn's forum is to take your meds no matter what. I would never, ever, advise anyone to avoid meds but I believe that the above statement deserves a response.

My GI was not sure if I have Crohn's or ulcerative colitis but said it did not matter because the treatment will be the same. But two colonoscopies and multiple blood tests indicated that I definitely have IBD.

The UC forum also has a majority of pro-med people but there are many others there who are much more receptive to investigative discussions. I have read on the UC forum how Ironwoman emphasizes SCD and supplements such as probiotics and fish oil. Imagardener2 suffered continuous flaring for 10 years and has found meds completely ineffective before finally discovering that diet modification brought her to remission. Napacabs is an orthopedic surgeon who quit Remicade and successfully maintains remission with SCD, yogurt and VSL#3DS probiotics. Subdued will only take 5-ASA suppositories if she feels a flare coming on. And many others.

No one has ever suggested ignoring Crohn's, but I am confident that I can control my disease thru diet and supplements. Let's say you are sensitive to gluten. In fact one out of 7 people are. Rather than taking medication every day, wouldn't it make more sense to avoid constantly picking at your internal scabs by indulging in triggering foods?

First of all the safer 5-ASAs like Asacol used by Nanners are ineffective for Crohn's. Study after study has verified this. For example:
www.acg.gi.org/media/releases/ajg201158a.pdf
Page 8: “5-ASA remedies are not recommended for preventing relapse in quiescent CD”. Or page 16: “5-ASA can be recommended to treat mild-to-moderately-active UC and to prevent UC relapse, but these drugs are not recommended for the treatment of CD or to prevent CD relapse”.

Not to mention that the side effects of these meds include kidney disease, liver problems, and pancreatis. And these are the safer meds. Even the Chronies on this forum don't recommend pred as a maintenance drug. And the FDA recently placed a black box warning against immunosuppressants including 6mp:
www.fda.gov/Drugs/DrugSafety/ucm250913.htm

Most newbies do no understand that most meds wear off in their effectiveness over time anyway. Then what are you supposed to do? So when somebody says that they were without meds for years before finally flaring I have 2 questions:
Did you completely ignore your disease during those years and not try diet modification?
How many others who were taking meds religiously were able to maintain remission for that long?
My guess is very few.

IMHO I would rather not risk the toxic side effects of taking drugs every day just so I can avoid the possibility of a flare in the future. Finally there is a new form of functional medicine that looks at autoimmune disease from an entirely new perspective:
www.huffingtonpost.com/dr-mark-hyman/is-there-a-cure-for-autoi_b_756937.html

Twinsrock, I too was told I cannot use Remicade as I too have the stricturing type of CD and the Remicade will cause rapid healing and create even more scarring which just would make me obstruct again. Babe is saying that my Asacol doesn't work for me??? Since he is a doctor and knows all about me and how well Asacol works for me, or even the Pentasa that works so well for Crohnie Too. Well I just got out of the hospital because I suffered from a partial obstruction. Not because of any inflammation, but because of my previous abdominal surgeries which caused me to partially obstruct because of scar tissue and adhesions. I want you know that I currently have NO ACTIVE Crohns, so my Asacol is obviously doing something don't you think. Meds will help to keep the inflammation down. You may ocasionally flare while on them, but I can tell you that things won't get as bad as they would without the meds. Also, because of meds it won't be so hard to get it back under control.

I do agree that diet has a place in this disease. But it is not enough. I actually consider diet, supplements and meds as complimentary of eachother. I don't know about you, but I would rather feel better, that to have this crap continually interupting my life. Good luck with whatever decision you make. Hugs!

I agree with Nanners, I think diet, meds & natural remedies should all be utilized according to the individual.

I would like to see colonoscopy results of ppl with CD on no meds before and after SCD. I can't recall anyone on this CD forum having a clean scope on ONLY scd for a considerable amount of time with no meds at all. I know one member had a pretty good scope on the maker's diet, but it wasn't totally clean either. But I think it's possible diet can help keep symptoms at bay for some people and should be considered.

There's no difference between meds in a pill (which come from the earth somehow) versus concentrated doses of fish oil, vitamins, supplements, etc, because you'd have to consume unnatural amounts of the earthly ingredients to equal the amounts in the natural remedy anyway.

It all comes from the earth somehow.

Blueberry-  I know you said you are on remicade.  Do you have the stricturing type of CD?  I'm a little confused as the doc's originally said I would never be a candadate for remicade ( 10 yrs ago) due to fast healing and promotion of scar tissue.  Today, the very same dr's are recommending anti tnf's as the gold standard for all active crohns.  They said new studies have shown it to be the most effacacious. I'm a little scared of it as they were so adamantly against it years ago.  And I'm actually going to one of the top IBD centers in the country, so they are supposed to really know their stuff.

THis to shall pass-  I have never heard of apheresis either.  I don't believe that is approved in the US.  Encouraging to hear there are other possible alternatives on the horizon, even if not in the U.S. 

 

Hi again

In Sweden.

I will have my 7th and 8th treatment on wensday and thursday.

I will ask them about the states.


Here comes some adresses and you can choise language on their site.


Europe
Otsuka Pharmaceutical Europe Ltd.


Hunton House
Highbridge Estate
Business Park
Oxford Road
Uxbridge
Middlesex UB8 1HU
United Kingdom

Tel: +44 18 9520 7100
Fax: +44 18 9520 7115
E-mail:
Homepage: <font color=#0000ff>www.otsuka-europe.com

If you want I´ll report after the evaluation in the middle of october?

"abroad"

Post Edited (this-to-shall-pass) : 8/7/2011 8:33:18 AM (GMT-6)

Twinsrock - my last small bowel follow through (about 6 months before I was put on remicade) showed narrowing in the illieum and cecum. I was on steriods after I really flared and then my GI did a colonoscopy. He has commented that even after a course of steriods my illieum was so inflamed that he couldn't even get his scope in. My symptoms had improved after steriods, and I would have had the illusion that I was on the mend if it were not for the colonoscopy showing otherwise. Apparently, although I was feeling at least 70% better after steriods my guts were still not happy. This is why my GI said I MUST be on medication even though I was feeling okay. He gave me a straight talking to and told me that I had many sections of small intestine that were inflamed and that without meds he predicted that within a short period of time I would have an obstruction and need surgery if I didn't do something different. He also said that when a surgeon cuts out a piece of diseased intestine (illieum/cecum it would be in my case) the surgeon would need to find a healthy section of intestine to reattach the cut end to. My GI said in my case it would be hard to find a healthy spot to attach it to and therefore the surgeon would need to cut out a lot of intestine.

My GI was willing to try 6mp and imuran (azathioprine) before remicade, but unfortunately I was allergic to the 6mp and imuran. Although I had narrowing my GI chose to put me on remicade anyway - he never mentioned worries about scar tissue, so for whatever reason he felt in my case the benefits far outweighed the risks. And really, in the end in my case even if I end up with a blockage down the road while on remicade I have hopefully at least delayed it - seems like I was heading there anyway. Also, since remicade I have WAY more energy and my hemoglobin is actually normal for the first time in my life, and I am eating fruits and vegis without consequences. I have diarrhea only once or twice a month now and way less pain and cramping. I was also getting significant joint pain and it has improved by 75% - so quality of life wise it has been worth it. I was TERRIFIED of going on remicade and really struggled with the decision - so I do understand. AFter 3 remicade treatments I didn't realize how sick I had been until I was suddenly feeling so much better - my fears have subsided now - although I know it is still a risk and am crossing my fingers! I guess what I am saying is although the road of meds can be an uncertain one - for me, the road without meds left me with a pretty devastated and unrepairable intestine and I am just thankful I got on the med train now and have hopefully bought my intestine a bit more time.
I agree with tsitodawg, the meds have changed and been studied further in the last 10 years - if your GI was concerned that meds would affect your intestine in a more negative way than no meds then likely they wouldn't suggest them. My GI is VERY conservative with medications so I trusted him when he told me it was time - he has seen this disease enough to know where it is headed.
Again, this is just my story and everyone is different! I hope you find some peace in your decision making - it can be tough!