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Mon, August 26, 2019 10:15 PM

Hi, everyone! My name is Lindsay. I'm 24 (25 in October) and currently live in Florida, though I was born and raised in Tennessee. I have 2 loving parents, an older brother that's loving in his own way, and a dog who likes to sleep on my bed.
I like watching TV/movies, listening to music, reading books, cooking/baking, and going to church when I'm able to.

I've kinda been lurking this place on and off, debating about whether to join or not. I realize this isn't a super active part of the forum, but maybe at least one person will see this post?

I moved to Florida in 2015 and had 2 blood transfusions within a month of each other. My doctors at that time thought I was losing blood from my cycles; I was having urgency and abdominal pain but never mentioned it... Cause, y'know, who wants to talk about that stuff with anyone? I got to a point where I could barely swallow one bite of food before I had to race to the bathroom.
I had to change doctors the next year due to different insurance, and in March of 2017, I had my 3rd blood tranfusion; my hemoglobin was 5.4 and I received 4 units of blood. I finally did mention my GI symptoms to the attending and they found blood in my stool.
Found a gastroenterologist, had my first ever colonoscopy and EGD, and was diagnosed with ulcerative colitis in May of 2017. Also found out that I have GERD. I lost almost 100 pounds in less than 2 years.

I've been on mesalamine (Lialda) since then. I started out at 2 tablets once a day; I currently take 2 tablets twice a day. I had a pretty rough flare in March and was put on prednisone to control it. My 2nd colonoscopy was done in April, and my GI doctor said everything looked really good.

I may have to eventually think of a different treatment option. I have a lot more joint symptoms than GI symptoms when I have a flare anyway, but lately the joints have been hit harder than usual. I was just diagnosed with seronegative enteropathic arthritis last month.

That was a lot, sorry! Congrats if you read all the way to the end, lol.

FPO lindsayrp
Joined Aug 26, 2019

Fri, January 10, 2020 11:50 AM

Reply posted for charbs.

Same here i had 5 pints transfused i finally had 22 pint. willl ask Dr for surgery cause nothing seems to help.

FPO keithjohnson305
Joined Jan 7, 2020

Tue, November 26, 2019 7:03 PM

Reply posted for lindsayrp.

You might want to look into biologics . Some people have good results.  Didn’t realize I was passing blood in my stool till some unrelated bloodwork signaled a problem. Started out with five pints infused, eventually had 23 pints. Finally had a collectomy. I also had GERD and Prilosec worked wonders for me. 

FPO charbs
Joined Oct 31, 2016

Thu, August 29, 2019 12:32 AM

Reply posted for lindsayrp.

Hi Lindsey,

I'm glad you decided to post and join the community! I am 20 and have had Crohn's for almost six years. I also get a lot of joint pain and I know other patients that have also been diagnosed with arthritis. Changing meds is often scary as there are a lot of unanswered questions. I have had to switch many times and have tried so many different meds, but I find for me the best way for me to keep going is to meet and talk with other patients about it like in these forums or in support groups so I know I am not alone and other people have gotten through it. Glad that you shared! 

Aleah

FPO aleahmd
Joined Sep 8, 2022

Tue, August 27, 2019 12:05 PM

Reply posted for administrator.

Hi lindsayrp
Thanks for sharing your story. We read all the way to the end.   

Choosing the best treatment is an important decision to make. While all drugs have side effects, some more potent than others, If one treatment doesn’t work you and your doctor can discuss other options.
A person’s medication needs may change over time.   What works at one point during the illness may not be effective during another stage.  Information about treatment are provided in our Understanding IBD Medication and Side Effects brochure.
 
Arthritis
 
As many as 30% of people with Crohn’s or ulcerative colitis may experience arthritis and joint pain.  Reivew our fact sheet on the topic to learn more at https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/arthritiscomplications.pdf
 
Support Programs
 
We have some other support programs that might be helpful for you.  
 

 
Call us if you want to chat 888-694-8872 x 8 or email us at info@crohnscolitisfoundation.org
 
 

FPO administrator
Joined Oct 12, 2017

Tue, August 27, 2019 8:59 AM

Reply posted for lindsayrp.

I had a similar problem. The first time I had to have five pints transfused. I finally had to have 23 pints.  Nothing helped till I had the surgery.  That did the trick good luck.

FPO charbs
Joined Oct 31, 2016

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