Crohn's Disease without symptoms

Hi Tia 32782 I am sorry you have been through a really bad time and because of your Father, went into the slippery slope of having to have everything checked because of the possibility of cancer. Have you seen a Gastroenterologist? which I feel you must have because of the colonoscopy. But I am concerned that you may not have had a Gastro person, but more a prevention of Cancer person. The trouble is that when I was diagnosed with Crohns, or Illietus at the time it was 50 years ago and there were very few cases and basically they expected you to die or at least not make old bones. The reason why I am saying this is that these days, because of the way we live our lives and the fact that we deal with a lot more problems and allergies, like Chlourine in the water supply , which in case you don't know is why Crohns is diagnosed, because your Immune System is malfunctioning and you develop lots of infections because of bad allergies because of it. You are not alone with your query regarding the fact that you cannot understand why you do not appear to have the pain people talk about even though they have told you that your Ileum is inflammed. I have a feeling that this has been caused because you have been through a bad time mentally with your Father and this is your bodies way of marking this. One thing I don't understand is why they gave you a chemotherapy drug? although maybe some of the new drugs they are using for Crohns is one that can be used for many different things. Half of the reasons for joint pain is the use of Steroids which does this. I took Steroids for 15 years because it was the only thing I could tolerate. Now of course because of the prolonged use, my bones and joints play up, particularly in cold and wet weather.So sometimes the pain we get is from medicines we have had to take. I weaned myself off Steroids and it took 2 years, but I did it, because I reasoned that if I got worse again I would have nothing to fight it with.

Tia, I know its a bit personal, but have you thought of seeing a good Gastro person privately?, so that they can have a look at your results. With Crohns there is a level they look for in the blood which proves once and for all if its Crohns. You can ask for a econd opinion if you don't have the funding to do the private bit, just need to go back to your surgery and ask for this. If you look up NACC on the internet and see what branch is close to you, they can tello you about people who are very experienced with Crohns and the like. 

Because I know what I was like when I was first diagnosed I too doubt that you have Crohns, its just a convenient box to put your symptoms in. Good luck to you and I admire you for not letting them take control of your life.

Best wishes and if I can help you in any way, write again.

Best wishes

Sheila 51371 

I forgot to also mention that I did read about crone's awhile ago and it did say that some people who have crohns don't even realise it because they have mild or no symptoms. My doctor said if I have crohns I could of had it for awhile and it didn't cause any symptoms until December just gone. It could lay silent. Its best to wait and see wat they say about it. I'm not taking meds as it don't make sense as I don't have symptoms. I've decided to wait and if I have any symptoms again I'll take meds. Inflammation of the bowel seems to relate to ibd only. Can't think of anything else it could be. I think I first found out something was wrong is when my stomach felt tender wen pressed down. It seems crohns isn't something easily diagnosed even with a Colonoscopy.

I was diagnosed with Crohn a few years ago during colonoscopy. I was surprised because did not have any of the symptoms that one expect and I was then in my mid 60s.  Apart from going to the toilet more than often and suffer from lose stool, I have never had any symptoms. I have been extensively tested, have had a few colonoscopies, etc.,  since diagnosed, so there is no doubt that I have it. Early on, like you, the doctor recommended medication but I refused due to the side effects and have never taken any. I take probiotics daily just in case, since I have no idea if they help. 

I have visited a few Crohn experts and I have been told by most that if I do not have any symptoms, there is absolutely no reason to take medication since medication does not cure just tries to mitigate the symptoms. I was also told that I am one of the lucky ones, that about 15% of those diagnosed with Crohn do not suffer from symptoms. My advise to you is do nothing as long as you do not need it. Most of the medication is really nasty and my cause other complications. Good luck! Erwin 

Hi there

Hope the Crohn's is not developing and you still feel no real ill effects, not great to be diagnosed but if you do lots of research and eat, think well you may feel alot better, at least symptomatically.

I was diagnosed in 2004 (prob had a little earlier) and have always been anti-tablets/meds etc, do it my alternative way 30 year old, but the disease for me developed I suppose much quicker and I needed to contain the early 'Flares'. Only in the first say 4-5 years was I getting these episodes. I decided to eat very healthy, more veges and little meat, little Alcohol and occasionally sweets. No dairy, soft drinks or fast food, even though they were out for me anyhow, I see alot of others say I eat what I want and stay on the Meds, now thats a bad way to treat your only Body & mind.

Getting to my point here is 'Yes' you can definitely feel no or very little ill feeling even though you still have the problem. have been on most of the Biological drugs over last 10 years and mostly this got me into long term remissions lets say feeling good for 3 years at a time, I thought that was great, u do not even think about the disease only keep to a good diet and healthy life. A few years back I travelled overseas for about a year (luv my long term travel) and spent lots of time in India, I fell ill over there and lost 6-7 kgs by the time I returned home.

I thought was the Crohns back I feel pretty tired etc... news was that YES it is back and you have mild inflammation and a stricture. I was promptly put onto another new Biologic- Enytivio, okay wanted to go the alternative off treatment way but here we are again, worked before should work again mindset.

This is 2 years ago, I have had some very mild signs since and noticed more bleeding etc last year.

More Colonoscopies have thus revealed a large Polyp and because of the nature of the cells they recommend removal of the entire bowel. I still wondering why I do not feel bad but the colon needs surgery.

I did not write this at all to put the fear in you or tell u my life story as so many do on these sites. I have to say that even without troubling flares pain etc the disease rolls along in many ways as I am now confronting..

I hope I have not confused or blurred anything in my writing. 

i would say to u that the Alternative route can be done, do lots of research, dont let the snake charmers take your well earned loot either. Diet in the early stages is King, I now look back and wish I gave the SCD or poss a GAPS diet a better go, could be worth a look. Maybe a Faecal transplant too.... look for the newest trials and therapies from the start. I have learnt the little complacency in my regime and anti-drug way does not always work out.

 Good luck for the future and don't worry but take charge and be vigilannt in the things that work, life changes daily and so does our body

take care 

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Hi  Tia,

How have things progressed for you now?  I’m was diagnosed after a CT & colonoscopy yesterday 😫 but I have no symptoms at all,  4 mths mths Who I had slight abdo pain and diarrhoea but took antibiotics and it all cleared.  I’ve seen the cobblestone effect in my TI but no symptoms. 

Hi  Tia,

How have things progressed for you now?  I’m was diagnosed after a CT & colonoscopy yesterday 😫 but I have no symptoms at all,  4 mths ago  I had slight abdo pain and diarrhoea but took antibiotics and it all cleared.  I’ve seen the cobblestone effect in my TI but no symptoms.   I had no sedation and no gas & air and was continually changing from lateral, to front, to back during the scoping.  I clearly saw some ulcers & the mucosa cobblestone effect.  I believe this all started from a infection from contaminated water.  I’m awaiting my biopsy.  HARDEST DECISION seems to be wether one stayed off meds as no symptoms, or goes on meds to try and stop the progression of the diseased bowel.  

Hi  Tia,

How have things progressed for you now?  I’m was diagnosed after a CT & colonoscopy yesterday 😫 but I have no symptoms at all,  4 mths ago  I had slight abdo pain and diarrhoea but took antibiotics and it all cleared.  I’ve seen the cobblestone effect in my TI but no symptoms.   I had no sedation and no gas & air and was continually changing from lateral, to front, to back during the scoping.  I clearly saw some ulcers & the mucosa cobblestone effect.  I believe this all started from an infection from contaminated water.  I’m awaiting my biopsy results.  HARDEST DECISION seems to be wether one stayed off meds as no symptoms, or goes on meds to try and stop the progression of the diseased bowel.  

Hi,

I was diagnoses with Crohn's 7 months ago. Right after I was diagnosed I had a surgery, since then I have no symptoms, no pain, so I have decided to take no drugs. I am on a strict diet, which is gluten, dairy, sugar free, I eat a lot of vegetables and very "clean" food that doesn't cause any inflammation and I feel amazing.

I do not have pain, no bleeding, no diarrhea, no mouth sores, or other typical symptoms of Crohns and for that reason I do not want to take immune suppressors during a pandemic. Silent Crohns can happen if disease is only in small intestines. I do get low acid in my stomach and uncomfortable bloating under my ribs every so often, but have found apple cider vinegar stops it. They ruled out pancreas issues and diagnosed me with Crohns after CT scan and colonoscopy. My ileum was inflammed and some old scarring was present. My mom also was diagnosed a long time ago with Crohns but never took medication for it. She doesn't have digestion issues. She has severe asthma and takes budesonide treatments every day. So we think it must be enough to keep hers at bay. I personally think I had an SIBO that was not treated for almost a year. I also think I became Gluten intolerant. The steroids didn't make things go away just put a straight jacket on the demon that was inside me, but antibiotics completely go rid of it. I was attacked by a cat and just happened to be given antibiotics they give people with Crohns and my body has been functioning well since then. I had asked for antibiotics in the beginning and the doctor refused. So I haven't gone back because I was not being heard/listened to. I interviewed 4 doctors when things first started, all of them just want to put an IV of biologics in my arm. I stopped consuming gluten, dairy, or red meat the minute things started. I follow a strict low residual diet. I had a blood test done to see what foods cause inflammation in my body. I take supplements each day: turmeric, cinnamon, ginger, Vit D, B-12, multi-vitamin, calcium, and Enzymedia Gold digestive enzymes with every meal. I do not eat out which doesn't bother me because I never did due to fish and shellfish allergies. I only drink water. I actively engage in stress reduction activities. I also engage in intermittent fasting as well. Monthly cycle, stress, etc can be triggers for digestion issues. When I start feeling digestion issues coming on, I do the following... I use peppermint spirits if I get spasms in lower GI, ginger tea when I need to get things moving, or apple cider vinegar in water for bloating in upper GI from low acid. I feel good. Better than before I was diagnosed. I believe the food I was consuming was a significant contributor to why I was not doing well. I'm sure years down the road something might happen, but I would prefer to live without the drugs for as long as I can so my immune system isn't suppressed during a time when I really need it on high alert against diseases like Covid-19.