Share Facebook
Crohn's Disease Forum » Your Story » First post - finally ready to join and share


02-04-2017, 08:24 PM   #1
Jersey Girl
 
Jersey Girl's Avatar
 
Join Date: Feb 2017
Location: New Jersey
First post - finally ready to join and share

I have been reading on this forum for about a year now. The information has been invaluable and I figured it was time to create a profile and contribute in some way. I am female in my late 40's. I have had minor issues, maybe two or three times a year, since about 1995 but always chalked it up to something I ate or a stomach bug. Fast forward to December 2015, I was prescribed an antibiotic for a lung infection and started with diarrhea after about 3 days. The doctor changed my medication but the diarrhea never went away. Mornings were the worst and there were days I had to stop 3 or 4 times on my 45 minute drive to work. I lost 25 pounds in about 4 months (150 down to 125). It was a stressful time as my grandfather was ill and I was running him to doctor's appointments and he was in and out of the hospital. I made an appointment with a gastroenterologist who said I had hemorrhoids, fissures and occult blood. A colonoscopy followed in June which identified proctitis, colitis from the rectum to mid transverse colon (left sided), diverticulosis in entire colon, internal hemorroids, perirectal abscess and granulomas present. I started Canasa - there was no improvement. I saw the doctor again in October and was switched to Lialda. I was also given Cholestryamine during this time. No improvement was seen with either. An MREnterography confirmed the terminal ileum appeared normal. I then had a sigmoidoscopy and an upper endoscopy in December which indicated esophagitis, mild duodenitis, duodenal nodule and gastritis. I was given Flagyl to treat the abscess which seems to have cleared up. All blood work and the prometheus testing were normal. At this time the doctor and pathologist do not agree on a diagnosis. The doctor is leaning towards Crohn's while the pathologist is thinking ulcerative colitis. I don't even care at this point - I just want to feel healthy. I started 40 mg of Prednisone two weeks ago and feel quite a bit better. It's not perfect, but the frequency and urgency of bowel movements has dramatically decreased to the point where there are some days I don't go at all. I am scheduled to begin Remicade infusions this coming Friday and am cautiously optimistic since the insomnia and sometimes manic feeling from the Prednisone are difficult to deal with even while the gastro improvement is wonderful. I have been very careful with my diet, pretty much low residue for the past year. Chicken, white rice, potatoes, eggs, protein shakes, pretzels and peanut butter are the basis of my meals. No alcohol or caffeine. So that's me. It is kind of cathartic to write it all down. I don't really have any questions at this time. It seems like anything I have needed to know has been asked by someone else and answered by many. I will continue to lurk and read and want to thank everyone who has shared so much personal information. It has been so helpful during the past year as I research and attempt to figure out what is wrong with me and what I should be doing moving forward.
02-04-2017, 11:05 PM   #2
woops!
Senior Member
 
Join Date: Apr 2010
Location: Virginia
Jersey Girl, welcome to the site. Glad you joined. It does feel good to just write stuff down and have ppl understand what you are feeling. It sounds like you were under some major stressors for a while, which doesn't help the ole gut! I hope your doctor continues to help you with your treatment. Feel free at any time to post, vent, or ask questions.
Hope you get to feeling better soon.
Whoops!
__________________
Wherever you be.... let the wind blow free!
02-04-2017, 11:27 PM   #3
Justanothercp
Senior Member
 
Justanothercp's Avatar
 
Join Date: Aug 2013
Location: Sacramento

My Support Groups:
Jersey Girl,
Welcome. Sorry you have a need to be here. I hope the Remcade helps you.
I have been on this bowel journey for about 35 years and holding my own.
One of the things that really helped me was diet. I have tried most of them and if you've been lurking on this site, you know everyone has there own opinion and different diets work for different people. For me, paleo diet really seems to help. I recently started a quality probiotic and that seems to help too, but it hasn't been long enough to really tell.
I wish you well!!
02-04-2017, 11:45 PM   #4
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Welcome Jersey!

I hope to get to know you better. This disease is very hard. I will offer you my support. As an IBD survivor I hope I can contribute to your success.


All the best and welcome again,

cmack
02-04-2017, 11:50 PM   #5
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Welcome. Feel free to come anytime.
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-05-2017, 05:52 AM   #6
scottsma
Senior Member
 
scottsma's Avatar
 
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

My Support Groups:
Hello and welcome,I find if I take Pred.really early in the morning with a drink of milk,It doesn't interfere with my sleep to much.I'll put the alarm on for 5 or 6am,then go back to bed for a while if I need to.Or your doc.should be able to help with something to aid your sleep in the short term.
02-05-2017, 08:04 AM   #7
Jersey Girl
 
Jersey Girl's Avatar
 
Join Date: Feb 2017
Location: New Jersey
Thank you for the welcome. Working on my diet is definitely my next challenge. I have a referral to a nutritionist and plan to get started soon. I have some food allergies I so need to be really careful when adding new foods. For the insomnia, I tried an herbal sleep tea last night and slept until 5:30 this morning so hopefully that will be my new normal. Thanks again for being here for me as I begin this journey.
02-05-2017, 09:49 AM   #8
tinytina
 
Join Date: Feb 2017
Location: Rhinelander, Wisconsin

My Support Groups:
Hang in there. Trust me its a long journey but you know you will always have support and understanding . Cry if you need to. Scream if you need to. Just let the stress out .
02-05-2017, 11:53 AM   #9
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Amen
02-05-2017, 04:12 PM   #10
Jersey Girl
 
Jersey Girl's Avatar
 
Join Date: Feb 2017
Location: New Jersey
Thanks...stress has definitely been something I am working on. I am generally pretty laid back but have a job that can get stressful at times. Staying mindful of my stress levels is challenging for me. I go to yoga, meditate, do acupuncture and have started float therapy. When I started this journey, I figured changing my diet would be most important but have come to realize that there are so many factors to consider when trying to get healthy.
02-05-2017, 04:29 PM   #11
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Thanks...stress has definitely been something I am working on. I am generally pretty laid back but have a job that can get stressful at times. Staying mindful of my stress levels is challenging for me. I go to yoga, meditate, do acupuncture and have started float therapy. When I started this journey, I figured changing my diet would be most important but have come to realize that there are so many factors to consider when trying to get healthy.
Hey Jersey,

Diet was key for my situation. Undiagnosed form of IBD. Hope the nutritionist helps. I'm here for you if you need help.

All the best,

cmack
02-09-2017, 09:17 PM   #12
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hey Jersey,

How are you doing buddy?

Give me a shout if you want to talk.

cmack
Reply

Crohn's Disease Forum » Your Story » First post - finally ready to join and share
Thread Tools


All times are GMT -5. The time now is 09:14 AM.
Copyright 2006-2017 Crohnsforum.com