Found Crohn's early.

[GrimsbyTK]

Hi,

By some stroke of luck, I was able to convince my GP to put me in for a flexible sigmoidoscopy less than a month after the start of my symptoms. As a result, we found a tiny little patch of Crohn's ulcers that were barely there in the sigmoid and descending colon (they look just like mouth ulcers), and a later MRI scan showed the disease was absent in the small intestine. My GI put me on Pentasa (2 packets a day).

What I was wondering is--since I seem to have caught this disease so early and in a stage where it's barely even there at all, have I put myself in the perfect position to stop it from getting any worse? In that vein, other than continuing to take the Pentasa prescription, what is there that I can do on my end to keep this under control--and could I actually manage to stay mild indefinitely? I've seen and heard how bad it can get and I don't want to end up suffering needlessly knowing I could have done something early.

Thank you for your help.

 

[Countess]

Hi Grimsby

My disease was caught extremely early with my initial biopsies showing as normal. I started with suppositories and ultimately it continue to get worse. I would just start on the highest dose of Pentasa and ask for Rowasa enemas. Initially I just used rectal meds but now wonder if I had done the max prescription for both oral and rectal if it would have made a difference. Unfortunately I am not sure if there is anything you can do because my disease was treated so early and within 2 years ended up on biologics anyway. You may get lucky and stay in remission for awhile or it may spread regardless. Try to get on both oral and rectal meds as together they work better. I hope this helps

 

[Guerrero]

It's good it has been detected early. Your doctor can avoid the disease to spread elsewhere thanks to medication.
You could try natural anti inflammatory supplements like turmeric or ginger ( however the efficacy is not proven), control your diet (avoid junk and industrial food as possible) and improve your instinal flora through probiotics.

 

[Kas8173]

It is good that you have caught the disease early.

What were your symptoms, and has the pentasa improved your symptoms at all?

I would suggest that every 6 months you ask for a fecal calprotectin test and blood work to check inflammation markers, white cell counts, mineral and vitamin levels. This is what I would do if I was in remission.

This will reassure you that the disease is still at bay without being too invasive. Of course if your symptoms worsen then this should be checked more often.

You may want to do another sigmoidoscopy in 6 - 12 months to check that the ulcers haven't gotten any worse.

Remember that pentasa has only been shown to be minimally useful in Crohn's. Due to the studies I have read and my own personal experience, I do believe it helps to some degree but the benefit it gives has only been shown to be very small. As Countess said, a combination of rectal and oral mesalazine has been shown to be more effective than either alone, but I think that study was in people with ulcerative colitis.

Also it is worth keeping in mind that in some cases Crohn's can rapidly progress in severity over only a few months. Although in your case, if your symptoms are only minor then watchful waiting may be a viable option.

You may be able to keep it at bay for now with the aid of the pentasa and a healthy lifestyle - lots of exercise, a diet high in fruits and vegetables and low in saturated fat, and make sure you get enough vitamin D, omega 3 and other vitamins and minerals. Probiotics have also been shown to be helpful.

 

[scottsma]

Hello and welcome.All of the above advice is sensible.One of the crohnie mantras is "everybodies different".Not even the doctor can tell you what to expect unless things are at a stage where only surgery will help.I started with a similar diagnosis as you in 2006.I also used rectal meds as maintenance for quite a few years.About three years ago I was diagnosed with crohns colitis.I've been lucky so far.I opted not to take meds except to control Diarrhea and constipation,when necessary.It's important to be careful with diet and to recognise what triggers any upset in your digestion.Keep healthy and fit.But try not to let it change your way of life too much.My IBD nurse told me at the start."You can either see yourself as a sick person who's sometimes well,or a well person who's sometimes sick".I am the latter,and I've been lucky....so far. Best to you.

 

[Albina378]

Hi All, I want to share something what I have read.

I just want to ask if someone ever tried using medical cannabis as an alternative medicine? I've been reading some article about medical marijuana and how it can help you in terms of pain management, anxiety disorders and panic attacks, inflamation, even cancer and a lot more. Like this review on a certain strain blimburnseeds.com/northern-automatic, it has a very high pain suppressing effect. Cbd and thc are also new to me and I don't even smoke. Alternatively, they've also find new ways to infuse cannabis on food and beverages. If this is true I cant find any solid conclusive evidence that speaks to its efficacy. Any personal experience or testimonial would be highly appreciated. Thanks

 

[scottsma]

Hi,we do have a medical maruana (SP?) thread which you might find interesting.
Canabinoid oil without the thc is easily available in the UK now,and the one you mention is just being prescribed to children with mainly fitting problems.But all of this is new in the UK.Cannabis continues to be illegal