RA and UC - I feel like alphabet soup

[Alphabet Soup]

I was diagnosed a couple of years ago with Ulcerative Colitis - although I've been living with it my whole life. Last year, I was diagnosed with Rhuematoid.

I'm sorry to be a drag - but is so wrong NOT to want to hear "normal" people's stories about stomach aches and "normal" arthritis stories.

It makes me feel invisible - frustrated - angry -

Now I just remain silent. I go through my good days and my bad days alone. It's fine- but when I'm flaring - its so depressing. I'm sorry to sound gross, but they sometimes flare simultaneously and then it's extremely painful to reach around and wipe my own arse. :stinks:

I know I'm not suppose to take ibuprofren - but my hands are so swollen and painful I'm willing to risk my gut.

 

[ronroush7]

Hi. I am sorry for all you are going through .

 

[scottsma]

Hello and welcome to the forum.Feel free to give vent and have a good old moan.We know what you mean about "normal"people and their belly aches and "Oh,I get that too"
I'm not sure you should be taking ibuprofen,but you know that already.I would have a talk with your doc.about taking something more suitable.Lots of us take tramadol and amitriptilyne to help with pain.Hope to see you around the forum.There are lots of threads to help you and to get involved in.

 

[scottsma]

Hello and welcome to the forum.Feel free to give vent and have a good old moan.We know what you mean about "normal"people and their belly aches and "Oh,I get that too"
I'm not sure you should be taking ibuprofen,but you know that already.I would have a talk with your doc.about taking something more suitable.Lots of us take tramadol and amitriptilyne to help with pain.Hope to see you around the forum.There are lots of threads to help you and to get involved in.



sorry about the repeat post......internet problem.

 

[Maya142]

Hi and welcome!! My daughter has a different kind of inflammatory arthritis - Ankylosing Spondylitis. She also has Crohn's. I assume you are seeing a rheumatologist? My daughter's AS is SO much worse than her Crohn's that she is allowed to be on an NSAID. Her GI is aware and agrees that she needs one. She takes it with a PPI, otherwise it tears up her stomach.

What treatment are you on for both your RA and your UC? My kiddo has been on biologics for years as well as immunomodulators like Methotrexate, Imuran or Arava.

She's had a terrible time - been in a wheelchair, missed a year of school, been on every biologic approved for AS/Crohn's (except Stelara) etc. We are hoping to get her back on her feet soon.

Have you considered reaching out to the arthritis foundation? They definitely have events for kids and young adults, but there are also events for adults. It might make you feel less alone.

It made a huge difference to both my girls (the older one has AS, but not Crohn's). Before that, they both felt alone and different and weird -- especially since they were both diagnosed in middle/high school. We have been to Juvenile Arthritis Family Days and the Juvenile Arthritis Conference, where they've met kids and young adults who REALLY "get it."

Your rheumatologist may also have some good resources - sometimes hospitals have support groups for patients with certain diseases - for example, an RA support group. CCFA has support groups for both Crohn's and UC patients.

Both my girls need a biologic, immunomodulator and an NSAID to be able to function. It took a long time to find the right combination for my older daughter (Humira, Methotrexate and Celebrex) but once we did, she has been able to live a pretty normal life. She even played soccer in college (recreationally)! She went from being in pain, missing school and lying awake all night to being a normal, happy college kid!

My younger one is still a work in progress and we are trying to find the right combination of medications for her.

I just wanted to say that there is hope. There are new biologics being approved all the time.

This is also a great place for venting when you feel down .
Hang in there!!