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Imuran and fear of illness

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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 309
Posted 11/12/2019 9:22 AM (GMT -7)
Hey All,
I don't post too often here but every once in a while I still get bothered about having colitis and taking Imuran and to be honest it gets me kinda down.
Overall I've been taking it about 10 years and have been able to live a pretty complete life with colitis, likely because of it. But it scares me. My entire identity is being an active, fit, healthy guy and a lot of times I deny I have anything wrong with me.
To the point, today I read an article about antibiotic resistant bacteria and the problems we will face in the coming years because of it. Then I look at myself and think such crappy thoughts like it's just a matter of time before I get something I can't fight off. I'm generally a really happy person, but it's hard to keep these negative thoughts at bay sometimes.
Anyone else ever have these thoughts? Or fears, rational or irrational as they may be?
I suppose it's just natural human anxiety. For the most part, live life today, don't worry about tomorrow, but definitely creeps in time to time.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17750
Posted 11/12/2019 10:28 AM (GMT -7)
I don't think it's irrational at all. It sounds like you're in overall really great health, and I would imagine your risk for infection isn't too high, even with the imuran. Have you talked to your doctor? You should get regular bloodwork while on immune suppressants to ensure your numbers are in a healthy range. I had my WBC drop really low a few times while on 6mp and I had to be very careful, but I stayed ahead of it, and I was fine. At a later point, I was on a bevy of immune-suppressing drugs and I got very sick, but I wasn't on just one drug, it was a combo of many.
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 309
Posted 11/12/2019 11:25 AM (GMT -7)
Thanks!
I def have my moments like all of us. I've had good scopes and some really bad ones. Gained, weight, lost weight, good stool, rain showers from the butt! All of it LOL. I look healthy and smile lots, but just goes to show you can't tell by looking at someone.
I do take bloodwork every 6-8 weeks and I've been yanked off of it also for my WBC count dropping low. I am only on 50mg now. Not even sure it does anything or just placebo.
Been on the "edge" of a flare for a while not, but seem to be keeping it at bay.
I just get nervous of the long term affects or getting sick because of it. I guess it is what it is, but it can take up space in my mind I'd rather use for something else! lol. I just get excited about the future and doing things then get these "what if" thoughts constantly in the way!
Always trying to enjoy the good days, who knows what's 1 year, 2 years, 20 years down the road.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/12/2019 12:07 PM (GMT -7)
I am about to start on this med and Humira soon and have similar fears so I totally understand. You're not alone! It's just one of many crappy things about this disease that we have to weigh the pros of taking a medicine with possible risks and try to make the best decision we can without being able to predict the future. Keep trying to live in the moment as much as possible. You're right that we never know what might change in a year, 5 years or even tomorrow. Sounds like you have a pretty good mindset. It's inevitable to feel anxious or afraid at times.
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 309
Posted 11/12/2019 3:52 PM (GMT -7)
Thanks Sara, I mostly bury these types of thoughts and go about my life, but sometimes it's my main fear and anxiety. It really is something that we have no control over so I guess all that you can do is deal with what you can control.
I don't post here often but I read often enough. But since I joined way back when, whenever I've felt the need to reach out you guys have always answered. I thank you all for that.
I hope everyone is as well as they can be too smile
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CCinPA
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Joined : Dec 2014
Posts : 1572
Posted 11/12/2019 6:44 PM (GMT -7)
50 mg is a really low dose. Have you ever had your levels checked at that dose? you may not even be in the therapeutic range. Are you on any other meds?

When you say that you are on the edge of a flare what do you mean? For me I'm either flaring or not. Flaring can be very mild or brutal. It's possible that you are mildly flaring now and if so you may need a different treatment plan. If you're not on rectal meds, that would be what to try first. Don't wait until it's one of those brutal flares to do something because those are much harder to get under control.

I understand the fear about immune suppression. I tend to think the same as you when I read those kinds of stories. But then I think there's not a lot I can do about it so I move on and don't let it get me down. There's all kinds of risks in life and getting an antibiotic resistant infection happens to completely healthy people too (in fact I think nearly all the stories I read were about healthy people). Be careful, wash your hands often, use hand sanitizer, keep a distance from sick people as much as you can ... that's about all you can do.
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AnnaM
Regular Member
Joined : Jun 2018
Posts : 21
Posted 11/12/2019 8:11 PM (GMT -7)
I totally identify with this, LeafsFan. This fear led me to experiment with diet (IBD AID, SCD), because I figured, after a tough winter of cold viruses where I was out of commission for way too long and had/have a kid who needs special care, I would be in much better shape if I could at least get off the imuran.

While I did have some success with diet and mesalamines (colazal) as my only prescription drug this year, I also while off imuran 1) contracted a freaking parasite, 2) developed an amazing case of contact dermatitis from a teeny pruning scratch, 3) experienced a ton of extraintestinal manifestations of my UC, mostly skin-related, and 4) had what felt like a 5000% increase in seasonal allergies. i have been out of commission A LOT. I dunno if it’s helpful to consider that just having UC suppresses your immune system and makes you a bit more vulnerable to things like parasites, colds, etc? (It’s more with imuran, obv, but still something to consider). in any case, after a miserable few months I discussed with my GI and have ended up going back on the imuran. And I’m feeling some relief.

I just want to tell you all this because I had (still have!) a lot of those same fears of infection. The list of side effects is daunting, as is the idea of MRSA and others like it. Its a tough mindset to work with. Hang in there.
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 309
Posted 11/12/2019 8:43 PM (GMT -7)
Thank you CCinPA and Anna for your replies
CC, yes my dr did mention that to me about the dose being so low but because at the time I was not flaring, he said maybe it's working so maintain the status quo. I didn't want to increase because at one time I had to stop with a WBC drop. I didn't know you could test your levels?? I assume GI could order that test? What I mean by edge of flare is I get a couple of days at a time of very loose and some discomfort. Seems to subside but then comes back. Almost like it's ready to let loose any day. Possibly it's just a mild flare and I should keep a close eye. Frustrating lol.
Anna, sounds like you had a rough year. I get the skin stuff. I have never had a wart in my life but now get plantars warts and even some flat warts on my hands. It's not great for the self confidence, especially because I'm fairly new to the single world again.
You're all right tho, it could be worse and it's best not to think of it and just be as safe as you can without being scared. I'd likely give the same advice, sometimes you still need to hear it.
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AnnaM
Regular Member
Joined : Jun 2018
Posts : 21
Posted 11/13/2019 7:59 AM (GMT -7)
OMG, warts! They are so frustrating! It took me the longest time to figure out why my feet hurt, as I too hadn't had a plantars wart before imuran. Best of luck to you in the dating realm -- I hope that you're able to meet someone awesome who doesn't give a rat's about stuff like that.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16197
Posted 11/13/2019 9:04 AM (GMT -7)
>50mgs of imuran is a low dose

I'll say! Imuran is dosed between 2.0 and 2.5 mgs per kilograms of body weight. As an example, I weight 165-pounds or 75-kilograms. So my imuran dosing would be between 150-mgs and 187.5-mgs a day.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/13/2019 12:12 PM (GMT -7)
I can relate to your identity being wrapped around being an active, fit person and that not jibing with having UC and all the challenges and fears this disease and the meds we take to try to control it bring along with it. I was running ultramarathons 3 years ago and now I'm completely out of shape (not all the UC's fault as I had some other serious life stressors over the past few years but UC and a ton of flares and prednisone didn't help). I hope to get back to being really active next year. When I was really sick the other week, I started researching running marathons and backpacking after jpouch surgery or with a bag and that made me feel a bit better, because other people successfully do it.

Regarding plantar warts, I actually dealt with those in high school, long before I got UC. Mine were on the bottoms of my feet and it took me over a year or two to finally get rid of them. What eventually worked was applying this prescription acid cream every night before bed and then covering it up with duct tape. I think I got it from a dermatologist. I had to do that for a long time. Having them frozen off in the office didn't work for me.
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iPoop
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Joined : Aug 2012
Posts : 16197
Posted 11/13/2019 12:43 PM (GMT -7)
After swimming the wife and I were laying on adjacent towels when she exclaimed, in her typical dramatic posture and voice: Did you know you have warts all over your feet! Me: uhh no, when am I going to look at the bottom of my own feeet? Her being the ever inquisitive scientist immediately began counting them and came up with 40-ish plantar warts total on my feet. At that time, I was on prednisone, remicade, and 6mp all at once all immune suppressors. And it takes an immune response to get rid of warts. Took me about 1.5 years to get rid of all of those warts. Saw the dermatologist multiple times for freezing, used an unimaginable amount of Compound W, wart remover. And spent many hours digging the dead skin out of the centers of those warts. Today, I am wart free, but in retrospect I should've bought stock in Compound W. It'll be a battle to get rid of them, time, patience, and perseverance are all assets to have.
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 309
Posted 11/13/2019 9:13 PM (GMT -7)
ipoop, yeah I know it's a really low dose. It's why I'm wondering if I should stay on it, or if I'm going to assume the risks maybe increase and nip the inflammation in the butt (or try).
LOL @ stock in compound w. I've used a fair share myself. I thought they were gone for good until the other day I noticed a little bugger on my toe. @#$@!
Thanks Anna, I'm sure it'll happen when it's the right person. I'm enjoying the time getting to know myself, but sometimes dealing with these thoughts alone is tougher than with someone to share with. Has it's ups and downs.
Sara14, looks like you joined here just before I did. I can totally relate. I do alot of extended 4 and 5 day hikes. At the very beginning of my diagnosis, surgery was discussed as a future option as nothing was working. I was on a trip once and every time I needed to "go", I had to dig a hole. It looked like someone air raided the place by the end of the week LOL. It was no fun at all. I read alot about j-pouch camping and backcountry hygeine for it etc. etc. It would change the way we do things for sure, but there are people that do it! I try to stay as positive as possible. Keep active when my body allows, and rest when it's telling me to. Hard not to cheat a little on the eating side too, food so tempting.
And yeah, Nothing a little duct tape can't cure LOL
You guys are all great!
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/14/2019 2:48 AM (GMT -7)

LeafsFan said...

Sara14, looks like you joined here just before I did. I can totally relate. I do alot of extended 4 and 5 day hikes. At the very beginning of my diagnosis, surgery was discussed as a future option as nothing was working. I was on a trip once and every time I needed to "go", I had to dig a hole. It looked like someone air raided the place by the end of the week LOL. It was no fun at all. I read alot about j-pouch camping and backcountry hygeine for it etc. etc. It would change the way we do things for sure, but there are people that do it! I try to stay as positive as possible. Keep active when my body allows, and rest when it's telling me to. Hard not to cheat a little on the eating side too, food so tempting.
And yeah, Nothing a little duct tape can't cure LOL
You guys are all great!

LOL at the "war zone!"

Duct tape is actually a treatment for warts, crazy as that sounds! Haha.
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 309
Posted 11/14/2019 9:07 AM (GMT -7)
I've actually used the duct tape in conjunction with compound w. Seemed to work!
Who woulda thought? Good for just about everything lol
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/14/2019 10:13 AM (GMT -7)
Maybe if we put a strip on our bellies overnight, it will cure our colitis. smile
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 309
Posted 11/14/2019 10:41 AM (GMT -7)
haha, so if I die in my sleep from this man cold I have and I'm found with duct tape in strange places, only you guys will know why. Nothing suspicious here! lol
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/14/2019 12:10 PM (GMT -7)
LOL! Good luck with the man cold.
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 309
Posted 11/14/2019 12:49 PM (GMT -7)
Sara14, I don't know any way to message you and don't want to spam the message board, but I wanted to ask you if you still do any light training, things like yoga, or eat as if you were training etc etc. I'm always interested in people who try to stay active with this stuff tugging you the other way.
Sometimes I feel like when I'm training for something, I'm automatically eating better and things can calm down symptom wise.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16197
Posted 11/14/2019 1:00 PM (GMT -7)
Unfortunately, there's no Private Message feature on this forum system. If you click on the blue user name by their post, an email address is shown if he/she chooses to make it available (mine is shared as an example). Not everyone shares his/her email though.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 11/14/2019 1:23 PM (GMT -7)
I just wrote a nice response and my internet went down and I lost it! Anyway, I edited my profile to make my email address show. Feel free to email me if you want!

My response basically said most days right now, I'm trying to go on short walks or hikes, do some yoga or strength training most days now that I'm feeling decent (still on 50 mg pred.). I'm worried about my bone health now, having been on prednisone so many times, so that's an added incentive for me to get back to a consistent exercise routine, as much as my body will allow. When I'm super sick, I just rest (it's hard to be far from a toilet at those times anyway). I have been debating buying a cheap treadmill to use at home, so I can have the added comfort of being close to a bathroom in case I need it. I haven't ran since this summer. I want to start running and hiking more again, hopefully next year! I definitely eat healthier when I'm training for something or just working out more. I've been eating pretty healthy. My one bad dietary habit I got into the past two years is cherry Coke from this place in town that uses the real cherry syrup (so good!), so I'm working on that one. Lol.

P.S. I picked up my very first Imuran script today. I am still waiting on my enzyme test results before I can take it though.
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LeafsFan
Regular Member
Joined : Dec 2008
Posts : 309
Posted 11/14/2019 1:23 PM (GMT -7)
Ah yes, makes sense, thanks ipoop....er John!
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