Hello All - new member here.

Hello All,

I am about to turn 36 this year and I was diagnosed with UC in March 2015 with a colonoscopy. I was prescribed Lialda at the time. After taking the medication for about a month I noticed I was feeling worse and worse. During the time I was taking Lialda I was experiencing debilitating pains in my stomach and I was having bloody diarrhoea and could barely even walk. I took a shot and took myself off the medication. Within 2 days I was back to feeling normal again and feeling healthy and OK.

I stayed away from the medication for some time and I felt fine. I would have an occasional flare up over the next year or so months but nothing too serious.

During the first few weeks or months I was just on smoothies and then I slowly went back to normal food.

During this time the doctor put me on other different mesalamine medication: Delzicol - this had the same effect but the pain and bloody diarrhoea started after about a week. I also tried prednisone for a week days which made me feel even worse...

So I stopped taking this also and stayed off until my next colonoscopy.

In Dec 2016 I went in for another Colonoscopy. This time the doctor said I have crohns disease or possible indeterminate ibd.

I was prescribed Asacol HD in Feb 2017 and these were supposed to be 3 pills a day at different times. My doctor suggested that I start with 1 pill a day for a week and second week take 2 and third week take the full 3 pills.

After I started taking 2 a day and closer to the end of the second week, I started have severe abdominal pain. I decided to stop taking this drug and let my doctor know. Within 2 days I was fine again.

I do have a doctors appointment in Mid March scheduled, but I was thinking of asking my doctor to not take any medications but to see if a dietitian could help me with helping choose foods which cause less inflammation. Or possible even just stick to smoothies for the majority of my diet till the end of the year (when I could have another colonoscopy to see how I am doing), I have also started a turmeric regiment to see if that could help.

The medications do not seem to have helped (and I have asked not to be on anything too aggressive) so I thought I would try a different approach.

This is the first time I have seen forums for IBD so I thought I would join to see if anyone else has any experience with this?

Thanks for reading all!

Hello and welcome.You've come to the right place for support and advice and friendship.
I was dx'd in 2006 and have used Asacol and Pred. when necessary.Through choice I'm not on any meds at this time,except for loperamide to control Diarrhea and dulcolax for occasional constipation,but only when I'm absolutely desperate.But meds are vital to help most people cope with IBD, as is diet, and I count myself lucky to be able to manage without meds. at the moment,although I am careful with diet.There will be others along soon to welcome you and to share their experiences.Your post will be helpful to others in the same situation.I hope you continue to keep well.

Great thank you Scottsma!

I feel I am better off without the meds - I find that I do not have SEVERE symptoms of IBD (unless I am in a flare). Even in the worst case I go to the washroom perhaps 5-6 times a day.

I was hoping to find out how many people find that being off of meds is better - but if they get a flare do they go back on meds temporarily?

Thank you!

Welcome. I can't speak about all medications but a few years ago I took myself off of one of the heavy duty medications called Remicade and I developed a bad fistula as a result. Just continue to let yourself be monitored by the doctor.

Hi pred8er,

Welcome. I hope you find some friends here. We are a helpful bunch. I have an undiagnosed form of IBD for which I have had numerous medical procedures and was able to put my disease in remission with diet and supplements. My GP has a wife with IBD and he recommended this site to me. http://nutritionfacts.org/video/achieving-remission-of-crohns-disease/ This is a direct link to a video about how to put Crohn's into remission with diet. Check it out it is about 5 minutes long and very amazing as is the whole site. Lots of resources there as well as here. Welcome again.


Wishing you remission,

cmack

I loved Asacol it worked amazing for me but they took it off the market here. From 2006 to 2009 I only did diet to control all my symptoms. It was a pretty strict diet with not a lot of carbs or dairy. Started off in the morning with a tablespoon of olive oil and lemon to help the bowels. I had a lot of the same things. Eggs for breakfast, soup for lunch and fish and vegetables and rice sometimes for dinner. I also had smoothies in between sometimes. After coming back from the war though I was in a full blown flair....go figure right.lol

pred8er,

I forgot to mention. Feel free to ask me any questions you like about what I did to battle this disease. I love to help people. (especially the sick ones)

Peace,

cmack

Hi I'm a mother of a 9 year old that was dignosed with crohns 2 years ago we started by cortisone then we did the Pentasa then Humira injection but he got a big flare and we changed his dr and his new dr in Germany recommended the modules for 6 weeks. Do u think it will help him as he really feels down and wants to knw if this will really help him. Please give me feed back if modules helped you before .

Sorry don't know modules buy pray all goes well.

Hi NGJ,

I'm sorry to hear about all the troubles. Welcome! I really don't have the answer to that one. Search this site. We welcome you. Somebody will have some answers. There is a thread called "Parents of Kids with IBD" Maybe look there.

Welcome again,

cmack

pred8er said:

Great thank you Scottsma!

I feel I am better off without the meds - I find that I do not have SEVERE symptoms of IBD (unless I am in a flare). Even in the worst case I go to the washroom perhaps 5-6 times a day.

I was hoping to find out how many people find that being off of meds is better - but if they get a flare do they go back on meds temporarily?

Thank you!

Click to expand...

Yes,I would go back on meds.until remission, then for a short while afterwards.But only if I thought the flare merited it.I think I can gauge how bad a flare is by now and usually I can manage it myself.BUT,most people need meds.just to get through the day and I wouldn't suggest doing without unless you discussed it with your G.I. first.