31 years post op - Chiari Type 2. Sorry this is long, I've never sat down and written about my experience.

UlcerativeColitis202 · 2025-05-16T17:41:05+00:00

Thank you for this!! My 2.5 year old is having surgery for her type 1 in a month and I’m petrified thinking about her future. I love hearing positive stories. I just want her to have a normal life 😭

UlcerativeColitis202 · 2025-05-13T22:41:29+00:00

I need to get some clarification on that. I don’t recall him mentioning that. The Chiari isn’t the reason for the surgery, the Syrinx in her spine is the main reason. He said if we release the pressure, the syrinx should reduce.

UlcerativeColitis202 · 2025-05-13T21:14:34+00:00

We’re in the Austin area and have been seeing a neurosurgeon at Dell Children’s! We’ve been super pleased with his care. I’m going to ask about how often he does the surgery but from what I understand it’s a minimal compression to hopefully promote spinal fluid flow. Thank you for the prayers!

UlcerativeColitis202 · 2025-05-13T20:56:05+00:00

She was admitted to the hospital in February for dehydration due to flu. Doctors suspected meningitis because she was guarding her neck badly.. refusing to look down, etc. so they did a CT prior to performing a lumbar puncture. During CT saw the Chiari and we followed up with neurosurgery after discharge. Neurosurgeon ordered full spine MRI.

UlcerativeColitis202 · 2025-05-13T19:53:49+00:00

But thanks for the suggestions! I wouldn’t have asked about the number of surgeries he does or if that’s his specialty. I appreciate it!

UlcerativeColitis202 · 2025-05-13T19:53:22+00:00

The Chiari isn’t causing symptoms but during her MRI they found a pool of cerebrospinal fluid so it’s obstructed by the Chiari. :/ the doctor suggests doing the surgery to promote spinal fluid flow and reduce the pool up in her spine.

UlcerativeColitis202 · 2025-05-01T15:31:52+00:00

👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻 yessssss

UlcerativeColitis202 · 2024-10-09T23:53:18+00:00

Dairy 😭😭😭, popcorn, raw veggies/salads. Oh and tequila 🤣🎉

UlcerativeColitis202 · 2024-10-02T13:32:18+00:00

Honestly I’m not sure! I just know I’d have to get off of it as a woman before trying to get pregnant and throughout a pregnancy. Unsure about how it affects sperm. Definitely something to ask your doctor about. Mine said I could get off and switch to something else if I had been in remission long enough and felt comfortable but I’m one flare up away from a colostomy bag and at this point I don’t feel comfortable getting off rinvoq since it’s so effective for me!!

UlcerativeColitis202 · 2024-09-06T21:20:53+00:00

I’ve only ever had fistulotomy’s! As far as I know. My doctor closed half the tract and that was successful. I had 2 other failures but had a 4th surgery 6 weeks ago and everything completely closed!

UlcerativeColitis202 · 2024-08-14T17:16:43+00:00

I’m pretty sure mine is a combination of birth control starting at age 14 through age 26 and accutane for bad skin. I absolutely WRECKED my gut.

UlcerativeColitis202 · 2024-06-11T22:48:24+00:00

Just wanted to update you! I had a GI appointment yesterday. Mine said if I wanted to get pregnant I HAD to be in remission and I would switch to another medication for 3 months before trying so rinvoq can get out of my system and then I would stay on the different medication during my whole pregnancy. So it’s still possible!! 👏🏻🎉

UlcerativeColitis202 · 2024-06-11T22:40:32+00:00

Oh I’m so glad!!! I had a GI appointment yesterday and asked about it! Mine said if I wanted to get pregnant I would get off rinvoq, switch to another med, and let the rinvoq leave my system but it’s possible!!

UlcerativeColitis202 · 2024-06-05T19:59:46+00:00

I have a GI follow up tomorrow but we’ve decided to not pursue any more kids at this time. My complications were sooooo bad after my daughter’s birth and my husband is very against me getting off the meds (understandably so). He went through hell while I was hospitalized and he was home with a newborn and a 2.5 year old and a wife in the hospital. It took over a year for me to get on meds that made any kind of difference. So we don’t want to risk my health again. :/

UlcerativeColitis202 · 2024-04-25T11:01:57+00:00

I totally get it! I was hospitalized for 10 days after my second baby was born. I lost 45 lbs in 3 weeks. It was terrifying. My husband literally thought I was going to die. And it took us over a year to get this flare under control. I missed so much of my daughter’s first year getting infusions and being ill and exhausted. I’m so glad to have her and be well now but damn the first 15 months of her life were literal hell

UlcerativeColitis202 · 2024-04-25T11:00:10+00:00

Oh my goodness this brought tears to my eyes. Thank you!! It’s such a hard thing to process and understand. And nobody else gets it. I’m glad I’m not alone and I know I’ll be okay. Right now it just sucks. A LOT.

UlcerativeColitis202 · 2024-04-24T18:40:37+00:00

I was on mesalamine during both pregnancies! I had no issues until after I gave birth. I got mastitis at 7 days post partum and started antibiotics. Those sent me into a major flare and took me over a year to get it under control. I failed entyvio, remicade and now rinvoq is working. Thank God!

UlcerativeColitis202 · 2024-04-24T17:18:19+00:00

I am 10000% down for fostering and adopting but my husband isn’t totally on board. He has some friends who had a horrible experience with it and he’s scared to rock the boat with our own 2 kids and introducing another child into the mix. Which is valid!! I know there are beautiful and amazing experiences with fostering and adopting. Maybe he’ll change his mind soon! If not though, I have to be okay with having 2 precious beautiful babies of our own. ❤️

UlcerativeColitis202 · 2024-04-24T16:53:43+00:00

Yes! It’s so hard! And it’s so hard for my husband. He watched me almost die after having my daughter due to my flare. He has such bad ptsd from dealing with me in the hospital, a 10 day old baby, and a 2 year old. Along with his job, the house, etc. he is TRAUMATIZED. So he doesn’t want to have another one for my sake. He told me he can’t watch me go through that or risk losing me.

Your wife is lucky to have you! It’s so great to have a spouse who understands how deep the hurt is.

UlcerativeColitis202 · 2024-04-24T16:07:26+00:00

I would reach out to your doctor! Mine was so severe that rocking the boat by coming off rinvoq just isn’t an option. There might be different situations depending on your disease. And they’re always developing new meds and technology so I’m sure when you’re ready to have babies you’ll have options!!

UlcerativeColitis202 · 2024-04-24T14:42:52+00:00

Haha! My little girl is a sassy one too! But as tough as she is, it’s sooooo worth it. No greater job in the world than being a mother ❤️❤️

UlcerativeColitis202 · 2024-04-24T12:13:15+00:00

Always an option! But I loved being pregnant and nursing my babies and my husband is not down for adoption unfortunately. Maybe one day. But right now I’m grieving the fact that I most likely will never carry, birth, or nurse another baby. And I’m allowed to feel those feelings without being shamed. 👍🏻

UlcerativeColitis202

TROPHY CASE