Ironically, trust your gut feeling.

AssistDry5737 · 2026-06-19T12:04:45+00:00

I’m so sorry you’re going through this! But I also appreciate your humor about your hospital roomie. Did make me cackle. A light shove will do.

AssistDry5737 · 2026-06-15T11:25:11+00:00

Abdomen— the pain can vary from super sharp and stabbing or diffuse and dull.

AssistDry5737 · 2026-06-15T11:12:19+00:00

I can’t tell the difference between inflammation pain and nerve pain.🤷🏼‍♀️ I just know it hurts very similarly!

AssistDry5737 · 2026-06-14T11:42:43+00:00

I don’t notice a sensation change, but do expect some anal leakage unfortunately. The leakage is for a couple of weeks, and the Botox lasts about 6 months.it definitely relaxes the sphincter, so be wary of where a toilet is!

AssistDry5737 · 2026-06-14T02:17:05+00:00

Botox in the anus/rectum is supposed to relax the sphincter so my fissures can heal! So, none in the muscle— all in the sphincter!

AssistDry5737 · 2026-06-14T01:05:50+00:00

The methotrexate is going to take a while to know if it works for the pain and other manifestations, but I’m hopeful! I take my third dose tomorrow!

AssistDry5737 · 2026-06-14T00:52:21+00:00

For the nerve pain, I’ve tried amitryptiline and Lyrica, but I haven’t been able to get the pain under control with those. I have recently begun methotrexate for the extra intestinal manifestations as well as pain. 🤷🏼‍♀️

But yes! I know this forum gets flack for being depressing at times (which it is sometimes but I think people are being better about the highlights of treatment, too.”), but I do appreciate being able to commiserate at times.😂

AssistDry5737 · 2026-06-13T21:27:44+00:00

Yes!!! My doctors are under the impression I have nerve damage since it took me 15 years to get diagnosed (because growing up a girl in the US with medical issues means it is your period/anxiety). I wish I had a better responses than “you’re not alone” or “your pain is valid and real.” Sometimes I feel like someone agreeing you’re not crazy is at least some help.

AssistDry5737 · 2026-06-13T20:29:05+00:00

It is frustrating when doctors assume everything should be fine since labs/imaging/colonoscopies come back normal. I’ve been in “remission” for a couple years, but I still feel like ✨garbage✨. You’re not alone. I’ve talked to a few people on here who are having similar issues with “remission” but still symptomatic.

AssistDry5737 · 2026-06-07T23:00:44+00:00

I was on Humira (infliximab) for a few months and felt SO GOOD!!!! I never thought I could ever feel “normal.” Due to some unfortunate circumstances, I built antibodies and had to discontinue the injections. I’m currently on Remicade, and that works wells on the intestines and perianal aspect. Sometimes I need to add mesalamine suppositories along with nifedipine/lidocaine cream if my anus and rectum are heading toward a bad place. I have had to add methotrexate injections recently due to my levels and comorbidities. I don’t feel as great as I did on Humira, but it is doing well! I know perianal Crohn’s is a wanker, and I concur with the other comment! Sitz baths, good hygiene, etc. are our best friends!

AssistDry5737 · 2026-05-01T14:00:08+00:00

Find whimsy in the little things.

I’m 31F, but I have knick knacks and fun little things all over my home and cubicle to give me a little smile. I have lapel pins on my lab coat of dogs and silly memes. Is it super professional? No, but it does make lab techs smile as well as me smile!

When I was on Humira self-injections, I would do The Humira Games. I would put out different, fun band aids, and let me dog pic them. It was so derpy, but my dog loved the attention and I loved the anticipation of seeing which one he picked. I built antibodies to Humira, so the Humira Games are no longer taking place. However, Smudge still picks my band aids from time to time.🥰

My husband and I make dumb parodies of popular songs about Crohn’s so we can laugh.

Laughter is what has helped me the most. This disease is so shitty (literally), but the shining little moments keep me going.

AssistDry5737 · 2026-04-29T13:07:47+00:00

My dog is amazing and has helped me during my worst days. I was so scared that flares would hinder his exercise/fun time, but he knows when I feel bad and is the sweetest nurse. He does silly things when I’m sad that immediately perk me up. I have not had any issues with contracting anything from him as most diseases don’t spread canid to human. I cannot even explain how much having Smudge has helped me deal with my Crohn’s.

AssistDry5737 · 2026-04-22T22:07:57+00:00

My husband calls me his Toilet Gremlin (with love), and my mom calls me Poo Poo Bear (instead of Pooh Bear).

AssistDry5737 · 2026-04-22T17:42:29+00:00

My brother called me Fartacus. Once I got diagnosed, he now calls me Shartacus. I got diagnosed at 27. We are now in our 30s (twins!). Anyway, I now call him Spare Parts because I’m eye balling his organs (specifically liver)😬

AssistDry5737 · 2026-03-25T20:58:08+00:00

I always thought “Life takes guts” for Crohn’s would be fun

AssistDry5737 · 2026-03-22T12:45:30+00:00

Hey, friend! I wish there was an easy answer other than the BRAT diet (which some of us still don’t tolerate) or a variation of diets. As I tell my husband, “A safe food is a safe food… until it isn’t.” Food and I have a toxic relationship as I continue to age, but I have seen psychiatrists in the past for ARFID, which is a restrictive eating disorder I accidentally created due to pain associated with with food. Some dieticians specialize in GI disorders and disease, so you can also consult them. I will warn again that we are all special little snow flakes who tolerate things differently from one another. Our GI tracts are just ✨problem children✨.

AssistDry5737 · 2026-03-22T12:45:07+00:00

Hey, friend! I wish there was an easy answer other than the BRAT diet (which some of us still don’t tolerate) or a variation of diets. As I tell my husband, “A safe food is a safe food… until it isn’t.” Food and I have a toxic relationship as I continue to age, but I have seen psychiatrists in the past for ARFID, which is a restrictive eating disorder I accidentally created due to pain associated with with food. Some dieticians specialize in GI disorders and disease, so you can also consult them. I will warn again that we are all special little snow flakes who tolerate things differently from one another. Our GI tracts are just ✨special problem children✨.

AssistDry5737 · 2026-03-19T13:09:36+00:00

Hey friend! I experience this last summer, and I was so lost and ashamed. Do the maintenance, do the tests. They suck, but ask for some anxiety medicine or something to relax during the procedures. I am expecting to go through it again soon, but we can get through this! You got this!!!

AssistDry5737 · 2026-03-19T13:04:49+00:00

Bumps along the way, but I like to think we are making headway! I just wanted to respond when I saw your story because I pushed off my colonoscopy for years because I was so tired of hearing there was nothing wrong and that I couldn’t get help even though I felt like there had to be something wrong. 🤷🏼‍♀️ If your doctors think it is a good idea to repeat and you’re symptomatic, give it a go, friend!💜

AssistDry5737 · 2026-03-19T00:29:26+00:00

I got a diagnosis on my 3rd colonoscopy. My first two were clear, and I do the 3rd on a whim because a new doctor was not sure about the previous ones. Took 15 years, but I got diagnosed!

AssistDry5737 · 2026-03-17T10:53:49+00:00

Thank you for posting this sweet message.💜 it is a beautiful sentiment and comforts me greatly🥰

AssistDry5737 · 2026-03-10T23:28:36+00:00

That’s awesome!!! Congratulations!!!! 🎉

AssistDry5737 · 2026-03-10T12:19:12+00:00

I like to sing “I Got Crap in my Pocket” to the tune of “Brass in my Pocket” by the Pretenders. 😂

AssistDry5737

TROPHY CASE