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Do you ever feel completely alone?

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Ulcerative Colitis
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 333
Posted 2/6/2021 7:52 AM (GMT -6)
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)

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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 2/6/2021 11:03 AM (GMT -6)
Yes, feeling alone is common during a flare and with this illness, and this is compounded by covid. I am in a nasty flare as well brought on by a new medical diagnosis on top of UC that has caused alot of stress.

I have been reaching out to friends daily and joined the chrons and colitis foundation. They have alot of online support groups and everyone is very friendly and helpful in the group. There are many people in your situation in the group.

I get your dilemma with the Aza. I am on Entyvio and hesitated getting on a med that suppresses the immune system and increases the risk of infections. If you have to keep taking antibiotics that harm UC, there is no way to get better long-term. Why don't you try a biologic instead of Aza this time? Maybe it would be less likely to cause infections. I know they all have risks, but people react differently to meds.
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 333
Posted 2/6/2021 11:16 AM (GMT -6)
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...?
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noodlesnoodles
Regular Member
Joined : Nov 2015
Posts : 389
Posted 2/7/2021 1:30 AM (GMT -6)
Biologics are proven safer than azathioprine. I'd look into starting a biologic and using Uceris to get you through until your maintenance med kicks in.
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 2/7/2021 1:33 AM (GMT -6)
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?
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 333
Posted 2/7/2021 9:12 AM (GMT -6)
Thanks noodles, I'll be calling my dr. Tomorrow to discuss either re starting aza or if he thinks I'm bad enough to go on a steroid as well. It's been a while and I don't think uceris was around then but sounds better than pred. I'll mention.

Jane, this flare seems to have gotten pretty bad quickly. I've been off aza for 2 months and kept it pretty under control but this week was a quick slide to the bottom. Yesterday was the worst day yet, prob 10-12 times to the bathroom. I haven't been that bad since my initial diagnosis so it was a quick reminder how bad this can get.
I started what I had left of aza cause I wanted to feel like I was trying to help myself. We'll see what the Dr says when I'm able to see him.
I find immuno and biologics both equally frightening to be honest. I tolerated low dose aza well enough but even then saw small side effects, skin infections etc.

It can be depressing and generally I'm a pretty happy dude. I just try not to focus on the little side effects if I'm in remission and able to do the rest of my life ok. Right now I have both 🤦‍♂️
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limey
Regular Member
Joined : Sep 2016
Posts : 185
Posted 2/7/2021 2:07 PM (GMT -6)
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.
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 333
Posted 2/7/2021 7:28 PM (GMT -6)
You bet Limey. Been watching these Leafs since I remember, finally icing a good team!
And thanks, my dr has mentioned biologics to me in the past but was always mentioned as the next step if immunosuppresion didn't work.
I'll be hopefully in touch with him tomorrow to decide what's next, whether to restart Imuran or to try another path. I wish I could control it better without the harsh meds but I know quality of life is just as important. We only get one spin around.

I too hope the vaccines are successful and people can get a mental break. It can be especially stressful dealing with health issues when you're isolated
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1354
Posted 2/7/2021 8:43 PM (GMT -6)
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!
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 333
Posted 2/7/2021 10:14 PM (GMT -6)
Thanks Flowersgal. I was on aza for 10 years and generally it worked. Few hiccups of course. The last year or so I started to see things like minor skin irritations or infections.
This made me think about getting off which I ultimately did.
Looking back the skin infections were pretty minor compared to a UC flare. A nuisance tho.
I will keep ya'll posted smile
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1487
Posted 2/8/2021 3:44 AM (GMT -6)
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.
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 333
Posted 2/8/2021 10:27 PM (GMT -6)
Thanks poopy.
Still waiting to hear back from my GI, but this is the real deal. Have had at least 10-15 BM's Today while taking immodium as well.
To say I'm worried is an understatement...
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 333
Posted 2/10/2021 9:43 AM (GMT -6)
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 sad
Feeling pretty low right now....
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1354
Posted 2/10/2021 1:20 PM (GMT -6)
I know steroids long term effects are scary but so is an uncontrolled flare. And the short term effects can be pretty substantial. Definitely a double edged sword tho. I was one of those who mostly loved the steroids because they helped so much and I never had any of the more bothersome effects like moon face.

I would also ask for steroid foam or suppositories which will mostly be topical effects
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 333
Posted 2/10/2021 2:34 PM (GMT -6)
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 🤞
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