Do you ever feel completely alone?

So the first time I was flaring bad, I mean really bad (I have had lots of bad days or even weeks), was about 12 years ago, my initial diagnosis. At that time I was 28 years young and about to get married. I had full support of my fiance and tho it did not change my symptoms, I didn't realize at the time how helpful that was.
Fast forward 12 years, I got divorced a few years back. No bad story, just a mutual decision that was better for us both.
I have very recently struggled with and chose to stop azathioprine. Was beginning to get small infections i believed were from a lowered immune system. As I was only taking 50mg, I thought ok why not try.
I'm now in my second bad flare. This time, with covid, and lockdowns, and living alone, I feel in this all alone. I don't feel like anyone understands or that I have anyone to really talk to. It also makes me feel undateable. I know that's dumb but that's where I'm at in this moment.
I'm real close to calling my dr to re start azathioprine. I just can't take the hopelessness that's coming with this this time.
Nothing I seem to eat or not eat or supplement is seemingly helpful and things are slowly progressing to be worse.
Honestly, I've built a pretty good little life for myself and besides being single, things a are really good.
But I'm scared like really scared and feel like this time I'm on this ride alone

Maybe this was more of an outlet than a question. I just don't know what to do next.

Post Edited (LeafsFan) : 2/6/2021 6:55:36 AM (GMT-7)

Thanks Jane. I have thought about biologics and my dr mentioned them when I stopped aza, but I wanted to see if I could do it without first since both lower the immune system I'm led to believe. I do take pentasa. It's weird because so many people report that it actually makes them worse. When I stopped aza, we increased that dose.

So I'll be reaching out to my dr Monday unless miraculously this weekend takes a solid turn.

I just get frustrated that I have to take something that affects me in other ways to get rid of something else.
However I'm brutally being reminded what's worse.

I'm trying to follow some diet advice and stick to things that have helped others. Possibly it's kept me from being even worse but i want to heal. Easier said than done. I know in here it's not looked upon lightly to stop meds. And I am in agreement, so far it hasn't been pleasant. But due to another reason I had to stop and clear things up. Maybe I'll have to re attempt aza again if it was working or discuss other options.
I see you have had luck with SCD...?

Yeah, I benefit from SCD. Due to SCD, I never had to escalate meds beyond mesalamine until I became hypersensitive to it.

Since you are only on Pentasa, there are some more things you can try before Aza. I would recommend Mesalamine 4g enemas and steroid enemas (you can do 2 per day). You can also try budesonide/uceris with the pentasa. It's a much safer steroid without any side effects. Lastly, Entyvio is gut specific and may be a better option than Aza. I hear that it's less harsh on the body and infection risk is lower, but I haven't looked at data to compare. It doesn't work right away though.

How bad is your flare?

Well I guess someone must be a fellow Canadian to follow the leafs.
Certainly don't be afraid of biologics, they have been the best thing since sliced bread for me.
Having said that I have had UC more years than I can care to think about and I do stick to a specific diet which works for me.
These are difficult times what with Covid and a certain amount of isolation.
Lets hope that this year with vaccines there is light at the end of the tunnel.

I never went on aza so I can’t compare but from what I’ve read seems like it can be worse on your system than some biologics. I understand your fear — I was depressed and upset when I went on entyvio but now I am sooo glad I did. I’ve been in remission over 3 years now. I have no side effects and haven’t been any sicker than normal (maybe even less?). I can eat what I want and don’t spend my time worrying if I’ll make it to the bathroom on time.

Good luck and let us know what your dr says!

Where I live (europe) biologics are used as "the next level up" after azathioprine, not because they are more dangerous, but because they are more expensive.
I've been on loads of different UC meds including azathioprine and entyvio. The only one that caused lasting damage was prednisone.....
The problem with stopping or starting azathioprine is it takes 2-3 months to know what the effect will be.

Just heard back from the Dr receptionist. Sounds like the Dr will be calling me today and likely going the route of steroids.
I don't know for sure but my stomach dropped once she said that.
They really scare me
Feeling pretty low right now....

Thanks FlowersGal

I read this after but Here's what the Dr. Said. Not all bad I guess.
He is sending a prescription for steroid. He wanted time give me pred but I asked him if there were milder options and he's giving me Entocort in pill form instead. Has started me back on the same dose of Imuran as before on in hopes it picks up where it left off.

And then he wants to do a colonoscopy on me again to see how it looks 🤦‍♂️

Fingers crossed 🤞