Viewing a single comment thread. View all comments

Skele_again t1_j9shirf wrote

Me too. I got one after my daughter was born which (undiagnosed crohns) turned into an abscess. Child birth and wasting away -lost 100lbs w excruciating stomach pain- from crohns over the course of 6 months don't even remotely compare. It's the only time in my life that death seemed like a good option to stop the pain.

My crohns is still active 16 years later & if I get slightly sore down there from all the bathroom trips I PANIC and worry it's a fissure. Legit wonder if I have ptsd.

4

grrrrrlar t1_j9skr5b wrote

My wife has a similar story. No kids but got abscesses and fistulas/fissures from untreated Crohns, she lost the same amount of weight as you. It was painful to watch. Do you have anything that has helped? It is likely you have ptsd, it’s common in those with chronic illnesses/autoimmune. I’m hoping you’re feeling better <3. You got this!

3

Skele_again t1_j9swtiu wrote

Oh I'm sorry to hear she also deals w fistulas! I had one and it was awful! I haven't found much that helps, I got into remission once for a couple years after a bowel resection but otherwise I've not had much luck. I did get to try Entyvio when it first came out but didn't have time to let it work before I needed surgery & there's some new drug out that also has great results in studies that I see a lot of people trying. I hope your wife gets a break from it all and gets a good remission. Take care of yourself too! It's hard to be on the sidelines watching!

2

emeeez t1_j9tr8c0 wrote

Another undiagnosed Crohnie here! I wasn’t diagnosed until after I almost went into sepsis from a perianal abscess and fistula. I was alone in London waiting to meet up with my sister for a planner London/Paris trip. I felt a lump and my dad told me to fly home, but I was stubborn. He gave my sister a bunch of antibiotics to give me (he’s a doctor). I was in pain which turned into excruciating pain and had fever the whole trip. Flew back home to New York and had emergency surgery 36 hours later.

It took 3 surgeries, a seton, and almost 2 years until everything was ok. I’m on remicade now.

2

grrrrrlar t1_j9uimhy wrote

Wow! Similar to my wife. She’s got two setons now and potentially having another surgery to address her abscess that keeps coming back. She’s on infliximab (inflectra, I think remicade is the same? so many names for one medicine!). She’s almost at the two year mark, and has gotten a lot better- just those pesky abscesses are the main issue!

1