My story

[Karedor1]

Hi, my name is Karen & I am 50. Last October 2013 I was diagnosed post, gastroscopy, colonoscopy & numerous biopsies with lymphocytic colitis, diverticular disease & lactose intolerance. After completing my first course of entocort and 2 to 3 weeks later I relapsed and am currently back on entocort. This drug is now my best friend!!! My specialist thinks it is autoimmune & I tend to agree with him.

 

[mdd]

Hi Good you are here. we are here for you. Ask and we try to help.

 

[David]

Hi Karedor and welcome to the community.

I was diagnosed with Lymphocytic Colitis as well but after dietary and lifestyle changes, I have been in remission for... hmmm, I think coming up on a year now. You can read about my journey here.

 

[Karedor1]

Thankyou

 

[dave13]

Hi Karen,welcome to the forum! I'm 50 as well and was diagnosed in November with crohn's.Everyone here has been great with all my questions and the resource section is helpful.

 

[Karedor1]

Hi Dave,

Thankyou

 

[mdd]

Karen how are you doing? this is Maria I to in my 50's. keep in touch. 50's are cool years!

 

[Karedor1]

Hi Maria, How am I is a very good question! I am trying to maintain a normal life and not letting it beat me. When I am on entocort I have no D but have frequency which is better than having very frequent D. I am still working full time doing morning & evenings shift work but have noticed for a while I need about 10 hours of sleep & when I am on days off I am exhausted! I am also seeing a naturopath & herbalist who is also supportive with my gastroenterologist awareness. I think working in the health field also helps as I probably know too much! My GIT dr did tell me it wasn't good that I relapsed so quickly after coming off the entocort drinking water also caused pain & D so I was having great fun!!! He also said it could get worse I didn't reply as I knew what he was implying. I have lost about 15 - 20kgs I needed to but not this way & am still! It is a complete change of life as you are well aware. I have always had a sensitive gut but the D would go away after a couple of hours but this has been ongoing since July where only entocort stops it. I know I can't live on entocort for the rest of my life. But there are people who are dealing with worst things & that's how I look at it as I suppose that goes with the territory of working as a ICU nurse.

 

[dave13]

I'm encouraged that your GI is working with you with a naturopath.I would be very interested in your opinions on the naturopathic approach.My wifes first visit after my resection she brought me 'Living with Crohn's & Colitis:A Comprehensive Naturopathic Guide For Complete Wellness' by Jessica Black ND and Dede Cummings.It's already a bit dog eared from use.I would like to fight my crohn's from this approach as much as possible.I see my GI for the first time later this month and am hoping he will be open minded.It's encouraging that you are in the "traditional" medical field and open to alternative approaches.

 

[Karedor1]

Hi Dave, My GIT Dr was okay with it as I said to him I can't live like this. I am still dong traditional medicine. There are quite few nurses that will combine both for their own health. I hope with both, something will work. My naturopath would like me to not have dairy for 3 months even lactose free. I am lactose intolerance borderline my level is 10 and to be diagnosed levels are 10 to 100. I find giving up chocolate hard as being a chocolate holic but have cut down she also wants me to stop drinking diet coke, now only mostly 1 can a day instead of 2. She also suggested Boswellia complex which I am taking 4 day. There are other herbs she has suggested but I haven't got them yet. Too soon to know if they are helping. All I know is that entocort stops the D. Good luck with your dr. I didn't ask I just informed him I was doing it as I said before I can't keep living like this. He knew I was over it. As you know you try to live a normal life but sometimes it doesn't work. I hope your recovery from your resection wasn't too hard & painful.

 

[mdd]

Hi Maria, How am I is a very good question! I am trying to maintain a normal life and not letting it beat me. When I am on entocort I have no D but have frequency which is better than having very frequent D. I am still working full time doing morning & evenings shift work but have noticed for a while I need about 10 hours of sleep & when I am on days off I am exhausted! I am also seeing a naturopath & herbalist who is also supportive with my gastroenterologist awareness. I think working in the health field also helps as I probably know too much! My GIT dr did tell me it wasn't good that I relapsed so quickly after coming off the entocort drinking water also caused pain & D so I was having great fun!!! He also said it could get worse I didn't reply as I knew what he was implying. I have lost about 15 - 20kgs I needed to but not this way & am still! It is a complete change of life as you are well aware. I have always had a sensitive gut but the D would go away after a couple of hours but this has been ongoing since July where only entocort stops it. I know I can't live on entocort for the rest of my life. But there are people who are dealing with worst things & that's how I look at it as I suppose that goes with the territory of working as a ICU nurse.

Good to hear from you Karen. I had to stop working because 4years ago i had 4bypass and one colpased. with my crohns,(psc) I was in the so called health field. I worked in nursing homes for 12 years. as a housekeeper. Learn alot from nurses, and aides. working kept me busy. Home i find things to do. i go to the gym. Its like my job. my weight is 107, 5'1 yea ive been thin every scence crohns. well thats a start. talk to you soon Maria. One day at a time thats what i say and do!

 

[dave13]

thanks Karen,I recovered well from the resection.It was my first ever operation and first time staying in the hospital.I was a little freaked out.:eek2:I need to let you know my nurses were awesome!I couldn't thank them enough when I was finally going Home.They encouraged me all the way and their positive attitude as well as their professionalism really helped me.I heard the hard times some patients were giving them,blaming them for Dr.'s orders,etc.I just thought I'd let a nurse know how my nurses were greatly appreciated.