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Ulcerative Colitis
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Posted 7/29/2016 6:35 PM (GMT 0)
Hello,
I haven't posted in some time as I've maybe been a lucky one who has remained in what I'd like to call remission with some symptoms. I've been able to live a fairly normal life so I'm not at all complaining.
Recently the last 6 months or so I've been going through some things in my personal life, one being a separation. This has been very stressful for me and I found myself in a routine to avoid being depressed ofeating poorly and indulging in more drinks or beers. And yes, having colitis, I'm no fool, the symptoms are beginning to come more frequently.
To combat this I have began about a month ago to eat better along with booking myself a back country trip which gives me the motivation to get healthier and be ready. Nobody wants to be pooping their way through the woods.
Anyways...this brings me to my frustration. When I try to get healthy I truly feel like I can't. I take Imuran. It's poison and keeps my body from being totally true and healthy I feel. I'm not even sure if it helps me but I'm scared to get off of it. Last Dr visit he wanted to up my dose and I said no.
This stuff suppresses your immune system. I consider myself a clean and healthy person, but I feel like this things gives life to unwanted things. Example...plantars warts. Never had one in my life. Get them all the time now. What gives. Anyways, I feel weak. Yes I'm a normal human being. It's pathetic I know but I feel like I can't just live a healthy lifestyle and give myself a fighting chance.
Possibly going through a separation has made this worse for me as now I feel like I have to present the best me possible if I ever want to meet someone again or just be alone.
I don't know where I'm going with this...this is a low point for me. I hate taking these poison meds...I'm scared to not take these poison meds. I'm at a loss for what to do next.
I want to be off them and take the best care of myself I can. I feel like I'm running on a treadmill and fighting against the very thing I take that's supposed to help me.
This probably all sounds like babbling so I'm sorry. I've dealt with this all so well for 8 years now. I guess facing things possibly alone is all that much more scary and so here I am spilling it all over this page.
Feel free to comment, PM or read and move along.
PS...I'm not clinically depressed, I'm pretty happy and easy going. I know life goes on and I'm not driving to a ledge. Just looking for some others who get it, have suggestions or maybe even have been through similar thoughts or issues to share. Thought I might find a couple here.
Now hurry and reply before I edit out half of this post lol.

Post Edited (LeafsFan) : 7/29/2016 2:25:39 PM (GMT-6)

Posted 7/29/2016 7:40 PM (GMT 0)
Leafs fan? As in Maple Leafs? That's the first problem. Habs rule:))
Posted 7/29/2016 7:51 PM (GMT 0)

U B Tough said...
Leafs fan? As in Maple Leafs? That's the first problem. Habs rule:))

I just threw up in my mouth a little.... rolleyes
Posted 7/29/2016 7:58 PM (GMT 0)
Have you tried alternatives like LDN, WOO stc etc?

Would you try rectal Meds? Seems like if you're heading into a flare & don't want to increase Aza, alternatives are in order.

It's an emotionally tough disease. Just look at my recent posts... We all falter especially when dealing with outside stress like relationship issues.
Posted 7/29/2016 8:06 PM (GMT 0)
I haven't tried any alternatives to this point. Have just worked with the doctors. I would consider rectal meds if they work but he seemed to think having inflammation further up in my colon that these would be little help if any.
I'm going to have a look and see what alternatives may be available. I have a colonoscopy scheduled for October I believe so I'll have a chance to talk with him after.
In the meantime I'm just trying to keep my stress to a manageable level, my sleep is crappy so trying to work on that, and keep all the other nagging crap in check while I sort this out.
It is definitely something that makes a regular situation a real challenge full of unhelpful thoughts.
Posted 7/29/2016 8:17 PM (GMT 0)
I can relate : re unhelpful thoughts. Managing stress is hard.
Do you have an outlet like playing hockey? (Rather than routing for a losing team?!).

I took a mindfulness stress course at TGH this past year. That helped. It was geared at ppl with chronic illness.

What about melatonin for sleep?
Posted 7/29/2016 8:28 PM (GMT 0)
I do play hockey! And I enjoy that very much. Managing stress is very hard, especially when things are out of your control and you hate them more than anything!! Every time I catch a cold or see a plantars wart or anything of the sort. Hell, even if I'm tired, or have a sore knee one day, I blame this stupid Imuran, then I blame colitis from there. There has to be a better way!!
Don't you worry about my Leafs, we are going to be just fine!

I should try melatonin. Right now my sleep medication of choice is Merlot.
Posted 7/29/2016 8:40 PM (GMT 0)
Hi LeafsFan,

I'm new to this forum but not new to a whole load of crap wrong with me, the worst being UC. We are different in that I'm female and 51, older but certainly no wiser.

I totally get what you are saying. I feel so frick'n damaged sometimes, so much crap wrong with me and so many pharmaceuticals to keep me somewhat healthy. I recently graduated to Humira ( not a good graduation 😫) because the az I was taking was poison to me. I worry, every time I inject that crap in me but it's making it possible to do things I want to do. It scares the bejeezuz out of me, to depend on a drug that will do gawd knows what to me down the line.

I'm also an avid hiker and backpacker, grew up doing those things and I hate when illness prevents me from doing things I want to do. Im also a longtime snowboarder but haven't been for the last 2 seasons and that makes me sad.

While we're being maudlin here, yes, didn't not expect to be spending my golden years battling bowel disease but I don't have a choice. I dunno, I guess it is what is, we were definitely dealt a sh!tty hand in life, not really any other explanation.

Well, blathered on enough but yeah, I get it, wish I could throw away all the drugs, go to the bathroom without worrying about the contents of the toilet, doctors appointments, chasing after supplements that might help, worrying about everything I eat. Gaaahhhhhh! All of it, so exhausting.

Well, no medical advice from me but definitely take care of yourself, your well being, sounds like you are going through a tough time. A backcountry trip might be a good revitalizer.
Posted 7/29/2016 8:49 PM (GMT 0)
Sorry that you are going through this. I have to say that I also blame pretty much everything on my UC that goes wrong with the ole body. It is rough to have this disease especially young. Just throwing a few things out there... I see you have tried probiotics...but have you tried metamucil? What about slippery elm? L- Glutamine? There are some things to give a shot. I will also second the rectal meds since UC starts at the bottom and works its way up. (yes, sucky to have to use them, but if it helps, then worth it).

Mentally it is tough...be kind to yourself and try to do thing you enjoy with people that you enjoy. This forum is here for you!
B
Posted 7/29/2016 10:01 PM (GMT 0)
Sorry you've got so much to worry about. Chronic illness plus all of that is a tough cross to bear. You've got a lot going on stress from the separation, worrying about meeting others, a distaste for uc treatments, a little depressed and eating badly, etc. I'd try not to overload/overwhelm yourself by tackling everything at once. Rather take them one at-a-time.

Well you have a chronic, lifelong illness known as ulcerative colitis. It sounds like you're in a bit of denial and trying to wish away the very treatments that you say are working well for you. Even in the "big if" you could successfully discontinue all medications and take up diet modification and supplements at an equal treatment result (a big risk), you'd then be forced to be religious with what you ate and making sure to take each supplement daily. A bout of bad eating due to life troubles would also likely result in a uc flare when using diet and supplements to maintain your uc symptoms( strict adherence is necessary). We're just kinda stuck with taking a regular maintenance medication, or eating specific foods + supplements, or sometimes both becomes necessary in order to maintain our uc symptoms and enjoy the best possible quality of life. Being complacent about or forgetting about our treatment (whatever it might be) is a good way to flare.
Posted 7/29/2016 10:53 PM (GMT 0)
I'm not even sure if it helps me but I'm scared to get off of it. Last Dr visit he wanted to up my dose and I said no.

I understand your worries because I had them. Been taking RX meds since year 2000 and never saw any beneficial effect on my symptoms. Some may say it's NOT the symptoms that matter, it's the inflammation (stupid).

So I took the leap into no RX....and survived. I'm not suggesting everyone/anyone do the same because if you are in remission or doing well then possibly your RX is doing something for you. But I never saw any improvement until I started diet modification, while taking RX oral and rectal. So I stopped oral RX almost a year ago and started them again when I got worried and stopped again :-). But...I take 3 g. of 95% curcumin daily which has studies backing it's anti-inflammatory benefits.

And I still use mesalamine enemas when needed because I failed to make satisfactory curcumin supps (tried).

Scary to go off the RX? Yes.
Diet mod. is hard in the beginning (waaaay hard) but easy now and I love the food i eat. Am I 100% back to pre-UC functionality? No, but I wasn't 100% taking RX either.

Is my normality better without RX meds? Not better but no difference between RX meds and no RX meds. No difference at all. At my yearly GI visit (soon) he'll find out about no oral RX and have no opinion which I like about him, he knows there are no definite answers.

Bottom line for me: Oral RX never had any beneficial effect for me and dropping it had no detrimental results (but did help my bank account).
Posted 7/30/2016 3:04 AM (GMT 0)
Thank you everyone for getting back to me. It is nice to hear from all of you and see that we all have these times and are always trying different things.
U B - hockey season is coming. Anything to help take my mind off of this is great - Go Leafs.

VerucaSalt (great 90's band btw), yes I'm hoping a backcountry trip will help. Lots of TP and babywipes will be adding to the weight of my pack, but it just is what it is.

Hatuec - I used to use Metamucil alot when I flared before and it really helped me. I am going to get some and try again. Also interested in trying L-Glutamine. Going to look into - thanks!

ipoop - totally get what you're saying. It's hard to accept sometimes as I see myself as a young healthy man, yet this just looms. It's not the colitis I haven't accepted, it's the damage I feel the treatments are doing to me. I just hate the trade off. It's hard to accept mentally. One day at a time I guess right?

imagardner - thank you. I want to monitor myself and maybe see if I can change my diet a bit, clean things up and consider then speaking to my doctor about possibly coming off the az. I am not going to be foolish. I will give this a lot of thought. I've been on it almost 7 years now. It can't be good for me and it scares me.

Thank you to everyone!! Reading all of your thoughts has helped.
Posted 7/30/2016 9:57 AM (GMT 0)
sorry for your marital woes - they can play bloody havoc on your life and gut -

there are a multitude of UC treatment options - pretty much everything out there has been tried by someone on this forum - you just have to figure out which ones would be reasonable for your situation -

good luck -
Posted 7/30/2016 8:23 PM (GMT 0)

LeafsFan said...

U B - hockey season is coming. Anything to help take my mind off of this is great - Go Leafs.

Here is your mantra to repeat to yourself to get you through the tough times:
AUSTON MATTHEWS
AUSTON MATTHEWS
AUSTON MATTHEWS
AUSTON MATTHEWS
AUSTON MATTHEWS
AUSTON MATTHEWS
AUSTON MATTHEWS
Posted 7/30/2016 9:41 PM (GMT 0)
CAREY PRICE!!!

(Such a hottie). Tee hee
Posted 7/31/2016 3:16 AM (GMT 0)
Thank you Juststud. Yeah, it can be tough no doubt. I think that's where all of this is stemming from along with trying to redefine who I really am. I'll find a way but it's much more difficult when you're alone I guess. Hence, here I am!

Serenity - best advice ever!

UB tough, that's twice you've made me nauseous now!!
Posted 7/31/2016 1:51 PM (GMT 0)
I would consider rectal meds if they work but he seemed to think having inflammation further up in my colon that these would be little help if any.

I just re-read your post and say this: use mesalamine enemas for 2 weeks and see if you have improvement (I bet you will). Your GI is mistaken that they will not help because inflammation is everywhere if you have pancolitis and in fact inflammation always starts at the bottom so virtually everyone with UC can be helped using enemas (maybe not Cronies because theirs is non-continuous and skips around).

You have nothing to lose and much to gain trying enemas. Yes they can be difficult in the beginning (learning how to retain) but your health is worth giving them a good try.
Posted 7/31/2016 4:14 PM (GMT 0)
Let's talk rectal meds and get down and dirty about it. Mesalamine enemas nightly for at least 3 weeks or more...you may need a month or two....then revisit even considering ro start going to every second night.

Both ends approach....take that info to heart as much as you understand hockey, and apply that effort to the very basics of how UC functions and how and why the mesalamine medications do what they do. Yes rectals work...I've used them for over 27 years. Yeah, the rectals take effort....they work. Consider it since you are afraid of the poison meds, steroid rectals can be used when needed.....it's good to have an arse-nal of options.

Fibre supplements with meals...i use capsules because they are easier and I take them with me when I eat out.

Good probiotics...i use what's in my signature.

Welcome to the forum...
q
Posted 7/31/2016 4:28 PM (GMT 0)
^^^^^^^^^^^^^
yup, what she said !
Posted 7/31/2016 6:04 PM (GMT 0)
And to be absolutely clear, Imuran isn't a poison. It's a uc treatment just like any other and it's helped many achieve and stay in remission.
Posted 7/31/2016 6:38 PM (GMT 0)
In all fairness of UC meds....not all of us will take all of them.
Expire the first-line at the very least.

q
Posted 7/31/2016 7:20 PM (GMT 0)
"yeah, I get it, wish I could throw away all the drugs, go to the bathroom without worrying about the contents of the toilet, doctors appointments, chasing after supplements that might help, worrying about everything I eat. Gaaahhhhhh! All of it, so exhausting"

This. So much this. I'm so sick and tired to having to fight this everyday. Survival mode instead of living. There has to be an answer somewhere to make the bad gut monster go away.
Posted 8/1/2016 4:05 AM (GMT 0)
Thank you once again for your suggestions. I will likely mention rectal meds to my doctor as a potential alternative and feel him out. It may be worth a try.
I do believe contrary to what some believe that Imuran is not healthy. Poison or however we should word it....if I need to take blood every 6 weeks to make sure I'm ok, then it's dangerous. Plain and simple. I agree it had helped and has benefits for sure. I just wish there was another slightly less harmful way.
That being said, everyone here had given great suggestions and support and it's s great starting point. Thank you!!
Posted 8/1/2016 4:35 PM (GMT 0)
Rectal meds arent an alternative....they are a treatment. And while I say first-line, they can be used with any other meds if flaring. Even with the biologics.
Request them. Put it on your list. No need to feel him out about it ......say you want to try them and will give them a faithful commitment. (Because..thats what it is).
I suggest mesalamine retention enemas 4g to start. They come in varying dosages, supps, enemas and steroid supps, enemas. Lots of options and combos.

Keep us posted as to the outcome of your appointment.
q
Posted 8/1/2016 6:23 PM (GMT 0)
LeafsFan,

Hope you are able to make your backcountry trip. Does a bear sh!t in the woods? More than likely and so does a person with UC. 😩😆

Verucasalt is my ha ha feminist icon but yeah, it was also a killer 90's band. The song Seether is meta(ish) about controlling our UC.

Again, no medical advice from me but a mini playlist. Music is everything I'm feeling emotionally, so passing on my short list of what I'm listening to, some old, some new.

Disturbing but cathartic
Call The Doctor - Sleater-Kinney

An ode to failed UC treatments
You don't get me high anymore - The Phantagrams

Arrrggh, what's happening song
Pedestrian at best - Courtney Barnett

Listened to this over and over when I split from 1st hubs
I am extrodinary - Liz Phair

Just a cool band
Gold Lion - The Yeah, Yeah, Yeahs

Something new, sad but hopeful ( they refer to God as she 👍)
Love letters to God - Nahko and Medicine for the people.
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