My story-not sure what to do

Hi there,
I'm a 43 yr old gal diagnosed with Crohn's in 1990. I was put on Asacol, but ultimately credit the SCD diet for my remission early on with the relief of all symptoms. Since then I have been a firm believer in the effects of diet on Crohns. I stayed on the SCD for several months, but gradually began reintroducing "normal" foods back into my diet until I was essentially eating whatever I wanted. I also stopped the Asacol. Fantastically, my symptoms never returned with the exception of occasional diarrhea. Despite the results of scopes over the years revealing severe, active disease, I have continued to remain relatively symptom free to this day over 20 years later without the use of meds. I feel incredibly lucky!

Recently however, I have been experiencing more episodes of cramping sometimes followed by vomiting. About one episode a month that lasts for a few days. My recent ultrasound indicated severe, active disease, with no complications such as abscesses or fistulas. This scan showed essentially the same result as the scan I had 3 years ago.

When I see my GI in a couple weeks to discuss the scan results he is going to try to scare me into starting heavy duty meds by telling me I'm at high risk of perforation due to the amount of active inflammation. However, with the exception of the occassional cramping and vomiting, I feel good. I assume the cramping and vomiting is due to a stricture as a result of the inflammation. Perhaps a strictureplasty would be indicated instead of meds? I'm terrified of the meds, because, as I see it, I would be trading in occasional mild symptoms that can be controlled by diet for a whole host of nasty side effects and risks. I've avoided them this long, and I'm extremely reluctant to start. I feel my GI is frustrated with my hesitation.

Any thoughts?

Hello and welcome to the forum.

With regards to the stricture have you been told that it is definetly down to inflammation? If not there is a chance that it is actually caused by scarring, especially if you have have untreated active disease going on for so long. This would mean an op of some kind is most probably in your future as meds will not fix scarring and neither will diet.

I can certainly understand the desire to be med free especially if symptoms are not at bad, but from my time on the forum one thing I have learnt is that leaving active diease untreated tends to lead to big problems as some point, those mild symptoms you have now could continue to get worse and worse. Your GI should however be taking the time to take on board your concerns and talk things through properly with you and not get inpatient.

Please keep us updated on how things go at the upcoming appt.

AB
xx

Hey there, Welcome to the forum!

I am glad to hear you are a firm believer in diet in the treatment of crohn's. I am as well and i believe that crohns can not only be completely managed by diet but indeed cured. It seems to me like obvious answer here is to revert back to the diet that worked for you in the first place. I too was extremely hestitant when it came to taking those harsh meds after being diagnosed with severe crohns, but i reluctantly gave in. After a year of having problems with the medications (constant pneumonia and other illnesses) I decided to give diet a try and abandon my medications (to the dislike of my doctor). I adopted a complete 80% raw vegan diet while periodically incorporating a 10+ juice fast from time to time. My disease regressed extremely quickly and i couldn't be happier. I continue to be disease free a year later. I got a recent scope a few months back and there was no evidence of disease.

You must realize that not everyone will respond to diets similarly, it is important to listen to your own body and decide what will work for you. Whether or not you take the meds you need to decide soon because you don't want the disease progressing any further and then regretting putting off your decision. Either take the meds or start your diet as soon as you can.

All the Best

Gianni

Please remember that at this time crohn's is not a curable disease, it can only be put into remission.

I think you hould have continues with the diet that worked for you, especially since the desease was active, even if you were symptom free....hope everything goes alright for you...al the best.

Thanks for your thoughts. At this point I can't be certain whether or not a diet change simply improved symptoms or actually reduced the inflammation, because even when I was feeling well with no symptoms, the inflammation was significant. As for the possible stricture, I'm not sure if it is due to inflammation or scarring. I will have to see what my GI thinks.

Hi there and welcome

If I was your GI, I would certainly be frustrated with you I'm not saying that to be mean, I can just imagine how they feel. It's one thing if your patient is truly controlling their disease with diet and alternative treatments. It's another if they have a history of severe disease at every checkup.

You've been rolling the dice for a long time and for whatever reason, you haven't rolled craps yet. I would have thought that it would have happened long ago, but once in awhile you do get that nice long roll at the craps table and everyone wins a lot of money.

But sooner or later, everyone rolls craps.

You're playing dice with your health If you don't want to go on the heavy meds, ok (though I suggest otherwise). But with severe disease like you have, you need to do something. We can make suggestions if you're open to them.

*hugs*