I finally decided to get a second opinion on my IBD. Especially since it’s clear cut as to whether I have Crohn’s or Ulcerative Colitis(UC). I tried to make the appointment today with the doctor that was recommended by my boyfriend’s coworker but they weren’t in the office today. It kind of drives me crazy how some doctors have Friday off. But at the same time I’m a little jealous because I’d love to have to only work 4 days a week! I plan on calling Monday and seeing if I can get it. Hopefully they’ll do it. There aren’t a whole lot of GI practices around here and the next closest one would be 1.5-3 hrs away 🙁
Hopefully they can get me in soon. I’ll have to work it in around my work schedule. Or I may just schedule the appt for when they can get me in and just say screw it. My health right now I feel is more important than my job because I can’t do my job without my health. And that is becoming very evident again. My symptoms are the worse in the morning and it can be hard to get going when I’m feeling absolutely horrible. Especially when that horrible feeling chains you to the toilet.
I also realized this week that I don’t like it when people tell me that I look healthy when I say I haven’t been feeling well and that my symptoms are getting worse again. If I could make you feel what I feel I’m pretty sure you wouldn’t say that I’m healthy. Or maybe I should just start carrying around pictures of what my toilet looks like after I’m done with it. They probably wouldn’t say I’m healthy then either. I know it’s an invisible disease but sheesh. My immune system is attaching my body. There isn’t anything that is healthy about that. I’m sure as time goes on I’ll have a list of things that I hate having people tell me that is related to my IBD.
The CCFA does not have any support groups in the area where I’m at. The closest one is now about 3 hrs away. I got some information for the chapter that my hometown is located under and they said that I could volunteer to start a support group since there isn’t one in the area. I would have to go through some training and an interview process before it got started. The CCFA would help out with resources, finding a meeting place and letting the local GI practices know about it. I’m just not sure if it’s something I want to be in charge of at this point. It’s definitely something worth considering though. If I can get in with the new GI I’ll have to ask him if he knows of any support groups in the area before I make up my mind about it.
Oh, man, the “But you look fine” people upset me too. With some people I think they’re trying to make me feel better, but what it really makes me feel is invalidated. FAR more people have invisible illnesses than visible ones, but there’s this perception that if you don’t look sick, then you must be faking or exaggerating how bad it is.
I don’t live anywhere near any support groups, either. I wish I did, but the closest ones are several hours away. And I do not have the time or the energy to start one myself. It may seem silly, but I’ve gotten a lot from some of the UC groups on Facebook. It’s a nice mixture of being able to vent, being able to ask questions, and being able to post poop jokes that people actually find amusing. It’s not as good as face to face support, but it’s a helluva lot better than nothing.
Good luck with the second opinion! I hope you find some answers and some relief.
Yeah, they probably are trying to make us feel better. But like you said, it just makes us feel invalidated. Even when I was really sick in December before I was hospitalized one of my coworkers didn’t realize how sick I was until he saw me in the hospital after I was starting to feel better. It’s so hard to be so sick and not always look like you feel on the inside.
There’s a couple of different subreddits on Reddit that are for Crohn’s, IBD and UC so I go on there sometimes and just see what other people have to say. I have posted comments on there a couple of times. I have looked at a couple of groups on Facebook but haven’t joined any. Oh and the Crohn’s subreddit actually has a chat room now that people are in. Although the couple of times I’ve been in it it’s been pretty quiet.
Thanks! I hope I do too. The GI doc I want to see, his wife has Crohn’s so he’s pretty invested in the disease. And from what I hear he’s into the cutting edge technology. I figured it’s at least worth a shot.
I hate when people tell me that i look healthy when i feel shitty
I started my own support group for QC on FB ,we are having our first meet up on world IBD day it feel good knowing there are people close by going through similar things and being able to talk in person will be amazing , so i say go for it start your own!
Good luck with your second opinion I hope you get all the answers you need.
It’s cool that you started your own support group! I’m definitely considering it. Was it a lot of work for you to start one?
Thanks! I hope I do too. I’m tired of feeling shitty 🙁
No actually it wasn’t hard at all haha, the members of the group are just as into it as i am , the only difficult park it setting up meets but we seem to have figured it out.
And same here i was doing good but caught a cold and it seems to have triggered EVERYTHING!
I’m glad to hear it! I know that there’s a support group in town for ostomy’s but I don’t have one of those. If you could let me know how the meetings go and what kinds of things you talk about that would be awesome! I really need to start gathering more info on it.
Oh my gosh, getting sick is the WORSE! I hope you feel better soon! Everything for me seems to get worse when I’m on my period.
ya for sure , i’m going to write a post about it!
and same here every time i get my period my symptom’s seem to flare. This time i started off with my period during that got a cold and now just feel like poo
I look forward to that post! 🙂
Oh no! That’s horrible! 🙁
thanks and indeed