Mild crohns?? Some questions

tsitodawg said...
They should be able to tell from biopsies and also from the double contrast C.T. scans. They will do a small bowel follow through to determine if there is thickening and there is a newer C.T. that can really give them answers. I just went through most of this. They can also try putting you on a steroid to see if the narrowing is altered at all when your inflammatory markers are lowered. If your doc is recommending remicade, I suspect that he feels that your narrowing most likely inflammation based. Depending on the severity of narrowing, your doc may choose to do a capsule study or pill cam test. This all depends on how bad the stricturing is and if they are worried that the capsule would make it through there. They would send a dummy capsule through first that can disolve if not passed by you first. The pill cam test would give them a very good visual of the narrowed area and help them determine if there is any scar tissue.

Dawg answered your q at the bottom of page 1.

Also, if they do a scope they *might* be able to see if there is scar tissue around the inflammation. But it could be hard to see scar tissue if it's all inflamed.

 

I've also had blood test that checked for markers??? That came back negative. I know that doesnt mean much does it?? Thanks in advance for any responses. I'm very anxious about this.

 

Thanks for the reply Roni..btw.. I don't mean to hijack this thread.

I saw two gastro's. The more experinced one doesn't think I have Chrohns. he called it "non-specific".

Is it ok to keep posting in this thread or should I start a new one?

I too had mild Crohns and the doc said that I would never need surgery.. Well 8 yrs later and the stricture was so bad that the surgeon was amazed that I was getting anything through it. 18" later and no major drugs, only Asacol and 1 yr later C-scope revealed active Crohns again. Time to pony up and go with the big guns so I picked Humira over Remicade just for the ease of taking it at home. Another year passed I had a C-scope and I was told no active disease found. I took Crohns to lightly in the beginning by not taking meds or listening to the doctor. This disease is nothing to take lightly as you may feel really good but it is inside you doing damage.

Personally I don't trust just doing diet and supplements. Also I find the diets to be much too restrictive. For me those would be my last resort. Because being "treated" for Crohn's to me means living as normal of a life as I can. If I can barely eat things, have to cook and prepare every little thing by hand, to me that is not living. I'd rather deal with medications that give me years of remission, where I can eat and have as good of quality of life as possible.

I'd also fear the silent inflammation going on in there without medication. Scopes seem to be what doctors rely on, and that annoys me to no end. Those scopes do not see every single part of our digestive tract. And as we know Crohn's can be anywhere. They miss things terribly with those scopes, even with biopsies. That's why so many people go undiagnosed for so long, or are told they are fine based on a scope. When in fact there can be disease somewhere that they missed.

Right now I'm prednisone for a flare, and I usually maintain fine with Asacol. I'm not saying I'll be jumping for joy if I have to move on to other medications. The side effects scare me too. Especially when I have Lymphoma in my family. But the disease is just as scary, so I have to treat it as necessary, with medications. Crohn's can be a very serious disease, to me it's not to be messed with. Or treated like Irritable Bowel Syndrome with some diet changes. If it works for others, I'm happy for them. But not something I would want to do. Just my two cents.

Very interesting thread. Drugs vs. Diet, Drugs and Diet??, which drugs, drugs are ineffective... These are all questions I have asked for myself and it's interesting to see others perspective.

I have been doing SCD for almost 2 years now. I believe that is is healing me and so does my GI. As you do SCD you have to learn about the American food supply chain and what you learn is scary. For example the latest I was reading about is honey, and how current studies show there is no pollen in almost all honey sold by all major retailers. This means they can and are adding Chinese honey, which is being supplemented by HF CS and contains pesticides and heavy metals. The average American eats 8 lbs of preservatives per year. I ate no preservatives last year, and now get my honey from a local bee keeper.
Also the ratio of carbs to protein and fats is important for health. The American food pyramid is so unhealthy and causes huge amount of illness and death. I eat lots of healthy fats and eat low carb. I now understand that this is how everyone was designed to eat not just me or CD folks.
Jenifer, SCD says "eat healthy and do not eat some foods that will make you sick". It is the screwed American food supply chain that causes SCDers to make everything. Believe me, if we could by pre-made food that was not full of garbage we would.
Some one else referenced nuts and nut butter. Although allowed, there is nothing that is required. I am only just recently eating nut butter as I feel I can handle it.

So here is where I am currently at.

If they found a cure for this DD tomorrow, I would continue to comply with SCD. I just know too much about the garbage in American food. And I am and will take a low dose of pentassa for as long as I do not need to do anything else. I know statistically this low dose will not work for all or even most. However, like Gail, my meds seem to be working for me, and even though I am trying to do what I can with diet and supplements, I do not want to wake up one day and find out Mr. Crohn's was having a party in my guts, and now I have to deal with the hangover.

This is a very intersting thread and I really appreciate all the differnt views and perspectives. I said "this is where I am currently at", because I continue to learn and evolve my thinking and threads like this help.

Dave

CrohnieToo said...
Understand that you can be in "symptomatic remission" but the darn Crohn's is still flaming away in your intestines and as I said earlier inflammation eventually causes scar tissue and there is no medication for scar tissue only surgery.

If I were in your position, my personal preference would be to forget the biologicals but go w/the 6MP and mesalamine. A short burst of prednisone or Entocort might be worth considering but I would taper and be done w/the steroid by 3 months maximum. The steroids are the fastest way to stop the inflammation in its tracks but are NOT a good maintenance drug at all. The sides effects just are not worth it.
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I agree fully with C2 above..... i was only DX in June last...my symptons were mild..ish.....my GI started me on 3 mths entocort...9mg daily...tapering..also nexium 40mg daily for 3 mths.....and asacolon 800mg twice daily...for life....the asacolon is my maintinence drug and i have to take this regardless... since strating/finishing the entocort/nexium i've had little or no symptons...There is no cure for Crohn's and it could be lying dormant for ages before rearing it's ugly head...this is why you need maintinence...if you're not happy with your doctor change him/her...Slainte

So from what I understand is that Crohns lay's dormant..no symptons..then one day it's a full blown disaster? No warning? What happens? No pain? No D? No C? just one day you wake up and need surgery?

Why ask the forum, you should consult with your doctor about Crohn's doing damage on a microscopic level. I could never find any information about this anywhere. I have heard of microscopic colitis, and I have even heard of microscopic Crohn's. This is when inflammation of tissue can only be detected with a microscope. But microscopic or not, you will definitely experience symptoms!

Please consult with your doctor. It is my understanding that scarring occurs from inflammation, and that repeated inflammation can build up scar tissue. By prolonging remission then meds can help prevent scarring. But I really don't know. Your doctor sounds like an excellent source of information.

livingwell, there was a paper published recently on the differences in gut flora among normal adults, Crohn's patients and UC patients. All three groups had different gut flora.

I do not believe that different gut flora CAUSED my illness. I do believe the opposite: that the illness caused my gut flora to differentiate from normal. Many people with IBD take probiotics and swear by them. I personally have not; I eat a good live-culture yogurt as often as I can and leave it at that. I don't go crazy with antibacterial soaps, etc., at home or away, I never use antibacterial lotions on my hands and I refuse to take antibiotics unless I have a diagnosed bacterial infection.

There's been much discussion on this forum and elsewhere about how diet affects our illness. I have changed my mind over the 18 months I've been posting here about this, and now agree that you can improve the condition of your gut through diet. I have elected to eliminate gluten from my life and it has made a huge difference. I don't see myself going all the way to SCD, but who knows?

In my experience, autoimmune diseases like Crohn's and asthma can have pretty predictable triggers (stress for Crohn's, allergens or virus for asthma) but my body's response to those triggers is fairly unpredictable. This year I could not get my asthma under control without going full up on all of my meds. I have no idea why. Two and half years ago my house caught fire and we spent 18 months rebuilding it - I knew I would have a Crohn's flare, and I did, but it didn't involve any rectal bleeding, only months of nausea, anorexia and joint pain. I'm glad that's over!

I take my meds and I plan to continue doing so.

 

Thanks for the replys. It seems like this thing varies with everyone.

Nanners..I had more thn 1 Dr tell me that meds do not halt the progression. Maybe you would have obstructed with meds as well?

Babeinthewoods..I think I know my body and I agree if theres something going on microscopic or not I think I would feel it's effects. IMO

I've had 6 years of no progression confirmed by scopes. My bloodwork is all good. I try to stay away from foods that bother me. I take a good probiotic partly because I had my appendix removed and i think it's a reason why I have some problems.

The rest I'll just hope for the best.

 

Dave, I think the sensitivity to gluten is directly attributable to some of us lacking the gut flora that assist in digesting the complicated proteins in gluten. Whereas people with Celiac disease lack a gene to process the protein, there are many people now turning up with sensitivty to gluten who do not have celiac disease. Since a lot of them are people with IBD, it seems a likely connection between IBD-gut flora-gluten issues.

Another group turning up with gluten sensitivity are women in perimenopause, who have tremendous changes going on and likely lose some of their gut flora as a result. Lucky me to be both perimenopausal and have Crohn's!

I can't see how changing your diet (like SCD) will bring back gut flora, but I can see how eliminating foods that need certain flora for proper digestion will change the way your gut functions if you lack those particular flora.

Kazbern

The argument made by SCD is that is does change the flora. SCD argues that is starves the bad flora out and that is why fanatical compliance is critical. Even a few grains of the stuff that bad flora feeds on will allow the bad flora to flourish. This is how to take the bad flora out.

We also eat SCD yogurt that is made with not greater than 4 bacteria of the good stuff. This has about 1 trillion per cup. I eat two cups per day. This is how to get the good stuff in. I also compliment this with lacto fermented food including pickles, mayonnaise and other stuff. This is also how to get the good stuff in.

In addition to changing the gut flora by the above, SCD eliminates foods that frequently cause issues like, grain, rice, all sugers except honey...

So it seeks to do both, eliminate troublesome foods and have good bugs in your guts.

I really am looking forward to the Rush study and really hope it tells a clear story.

Dave

Hey Dave..Any news about when the results are going to be made public?