Can you have Crohn's Disease and a normal colonoscopy

[megawatt]

Can I ask you guys what you think about this?
My wife has had Crohn's Colitis for 4 years but she’s been off all prescription meds for the past 2 years. She had previously taken Prednisolone and 1 shot of Infliximab during the onset of the disease and then they tried to put her on 6MP and Azathioprine but she reacted very badly to these so they were stopped. Prednisolone made her joints become so inflamed that they became rigid and she was in a wheelchair for 18 months during the whole time she was on it.
In the last 2 years since she has been off any meds her condition has remained the same, she hasn’t had any D – only ever has 1-2 formed BM’s a day- no fevers, no pain or cramping etc and has got by on various supplements including Primal Defense, Colostrum, Vit D3 and E, Zinc, Fish Oil, Flaxseed, L Glutamine and dietary changes i.e. no sugar or milk products.

However, 2 years ago a new GI took over and has advised us at that time that her folder containing all her medical records had gone missing! He’s been asking her to have a colonoscopy all this time just so they had some information about her.
Anyway, she had the colonoscopy and it has revealed some mild inflammation in her transcending colon. He now wants her to start a regime of methotrexate and infliximab as my wife is intolerant to Sulfa drugs and 6mp and azathioprine. I know he doesn’t like the fact that she’s not on a any meds but I think as her condition has remained stable and the inflammation was only mild is that a good enough reason for her to start on some pretty heavy meds?
My wife is against the idea and ultimately she knows her own body better than anyone else, but I wondered what you guys think?

While we're on the subject of Colonoscopies can any of you advise if you ever have a totally "normal" (colon) results or is there are always sign's of inflammation with someone with IBD?

 

[kskitt]

i think as long as your wife dosnt have any problems then staying off the medication would be good.

 

[Kev]

Hi Megawatt Welcome to the forum.. I'll try to be brief for a change.. My 1st attack was approx 17 yrs ago. But it wasn't dx'd at the time. Then, in Apr 2001 I had 1st colonoscopy... all clear EXCEPT for old scarring from my undx'd first attack. Then in May 2005 my next scope showed very mild inflamation... GI thought it would likely go away with a/b. in december 05 next scope showed that I needed emergency op to remove 1/3 of my colon... they did the op in Feb 06... follow up scope showed A-OK. Then, in July 06, next scope showed full involvement of the colon. That's pretty much where it stands today... Trying a vareity of med so that I don't end up losing the rest of my colon.. So far, it hasn't met with much success.

Anyway, advising someone what to do is always tricky proposition, especially if you consider none of us here are qualified to give medical advice. I mean, if you were in a hospital, would you let the person in the next bed operate on you? My thoughts on the subject, based solely on my personal experiences, is that this is a type of disease where it can really turn nasty PDQ, with serious consequences. I also (and the ladies here will probably tar and feather me for this commentary) not ever met a woman, who once her mind is made up, could be persuaded by a mere male to change it. Think the best one can do is just support them, and not try to second guess them in their decisions. I know that I have final say in my fight with it.

 

[Cara Fusinato]

If the status quo is holding steady, I (personally) would go with it. My doctor told me that I can remain off the stuff unless I get into problems and then we would have to start. Just because a colonoscopy shows a little something is not necessarily time to panic. However, it is your wife's decision as she knows her body better than you, me, or her doctor.

 

[D Bergy]

She is going to do what she wants in the end. My philosophy is the person who has to live with the disease has to live with the consequences of actions taken or not taken, so it should that person that decides.

I have had a few nurses and doctors that seem to be incredulous that I had no prescription medications. This was before my Crohn's diagnosis. I am only 45 years old and after a while I started thinking that they would be happy to give me a prescription for anything, just so I would have one. I realize that is likely not true, but the old saying goes something like this: "to a carpenter every problem can be solved with a hammer" This does have some truth to it.

If it was me, I would continue to do what has been working for me, regardless of what it was. When it no longer works, then look for something else that works.

You are dampening the inflammation process and controlling it to one extent or another. The inflammation is still trying to happen, but you are mostly treating the symptoms. That is the only problem with most all treatments, yours and mine included.

I am in a similar situation and am happy with my results so far. But, I am still mostly treating symptoms, just not with medications. I would rather get closer to the root cause, if possible. That is why I am going to try Low Dose Naltrexone.
It is about as close to solving the original problem as you can get. Like everything else, it does not work for everyone. You may want to consider this option in addition to what you are already doing.

Ultimately, it is your wife's decision. I hope she stays well, with whatever she decides to go with.

Dan Bergman

 

[megawatt]

Guys thanks for your replies.. they're much appreciated. We went back to the GI yesterday as they had some further results, all bloods were normal no inflammatory markers, they also reitereated that biopsies taken in the original scope also confirmed only mild inflammation. We went through the same MTX and infliximab recommendations but MTX means no more babies so that was thrown out of the window.
The GI then recommended VSL#3 - which in a way we were both impressed with as it shows a bit of forward thinking by him but also made us both laugh as the previous GI rubbished probiotics.
Anyway, as things seem ok for the moment my wife is going to carry on with her current regime - I'll keep you informed.

Guys, good luck with all your treatments and battles with this disease and Dan, good luck with the LDN, I really hope that works for you... we did ask about LDN but I'm not sure it's available for use with Crohn's in the UK at the moment.

...and I have to say that this is definitely one of the best Crohn's forum's out there.