How to cope with it all.

I'm going through a bit of a rough patch right now and wondering how does everyone cope with this disease. How do you come back from a particularly bad flare?

I was in remission since graduating university in 2012. This May I moved and started a new job. Within the first couple weeks of June I was flaring badly by July I was in and out of the hospital regularly and since the town has no GIs I had to move back in with my parents so I could see my old GI more and get things under control.

My new job laid me off at the end of July because I had taken too much sick time. I still have cramping and urgency but without insurance or a job I don't know how I can afford much more than the piles of prednisone I'm already taking. I'm completely exhausted and want nothing more than to feel better and start working again.

I'm in Canada so appointments and hospital trips are covered its prescription costs that worry me. My current GI is great. He is the best of the four I've seen so far.

Hi and welcome frustrated, sorry you have to be here of course.

I'm in Canada too, (Alberta) I see a therapist that's right out of my GI's clinic in the Foothills hospital and she specializes with IBD/IBS and other gut related issues, she's been a great help in providing tools for me to use to deal with my anger, cope with stress and anxiety as well as fears in general. She has me doing guided meditation for the mind and the body as well as suggesting to incorporate yoga more routinely.

She also suggested I buy and read 2 books, both were great....

When the Body Says No by Dr. Gabor Mate it's about the mind-gut connection and how they interact with illnesses
Wherever you are there you go by Jon Kabat-Zin it's for meditation

Both have been very helpful and were reasonably priced as well at Chapter's Book Store, you might even find them online at amazon for a bit cheaper maybe.

Do you have any benefits through work to help pay for your RX?

I've gone through 4 GI's as well, on my 4th one that I finally like, so I can relate to that issue as well.

Yah it stinks
It's really tough to be diagnosed and the drugs are quite pricey
From what I understand they are a bit cheaper in Canada but that probably isn't saying much.
Even though prednisone is cheap do not keep taking it if it's not necessary as it can cause issues
I hope you are able to get a job real soon and get back on coverage
Some medications have assistance programs here
Maybe they have the same by you?
I know lialda and remicade and humira all do so I'm assuming others do as well

On the positive side, the biologics can work wonders for many people. usually the costs are covered and they have programs to help people pay the parts that aren't covered.

Finding another job is the best option. Though in my field that almost certainly means moving again and finding another GI. I filled out the profile though I might be off on the prednisone dosing but I start tapering on September 7.

Prednisone made me crazy and gave me anxiety
I switched to medrol and it was much better

Personally I would go with biologics and they have income support programs for biologics too so even if you can't afford a dime, they will cover the med for you...in Canada for sure, that's what my GI told me.

Find a good therapist that specializes with IBD and other gut issues....with the tools I mentioned above that mine gave me, I'm less depressed and suicidal than I have been in a very very long time.

Are you only on prednisone? I was only on pred too since I was allergic or non-responsive to all the other oral meds used to treat IBD, once I started to taper off of pred symptoms were full force and they weren't that great while on the highest dose either but better than nothing, until pred stopped working for me each time I went on it again (a handful of times total) by the last time I went on it, it did nothing at all for symptoms, instead I just got worse and worse side effects from it...

Pred is used mainly as a booster drug while waiting for maintenance meds to kick in, without maintenance meds along with pred chances are it won't bring you out of a flare...also the reason its considered a bandaid med.

I totally get the depression aspect of it as well, I started seeing a therapist that specializes with IBD and gut issues, she's actually right in my GI clinic that I go to, she's been helpful, I told her I didn't want to be medicated for my depression so she's been having me do guided meditation for the body and for the mind and also suggested yoga more regularly being a huge benefit, combined, these tools have been helpful, it's up to me to do the work daily and that can be a challenge sometimes but without it I notice I quickly will revert back to the negative sadness of depression and anxiety...so obviously the tools of meditation she's given me do work as long as I use them (like taking a pill but no disgusting side effects) you may want to look into that as well.

Sounds like you need a hug NCOT...

malaika said...
Sounds like you need a hug NCOT...

I always need a hug ;_;

pb4 said...
Because I'm sick of every med out there that's "suppose" to help and ends up having crapty side effects, and if I can combat my depression and anxiety without meds then I'd rather do that then jump on the the bandwagon of swallowing every pill under the sun for every health issue....is there something wrong with wanting to use a better approach then meds all the time? Because the meditation and yoga have made a huge difference for me (which is the approach my therapist has taken with my depression and anxiety) if others want to pop pills for all their issues that's fine and their right to do so but that doesn't means it's the only option.

Think you missed my point.

You wouldn't take a biologic for years because you were convinced you could treat your Crohn's with 'natural' methods; you also used to claim in your sig it was a success. Do you see the parallel with antidepressants here? I'm not promising an antidepressant will work miracles or have zero side-effects, but you won't even know how much one might help if you never even try.

There are of course different levels of depression and everyone has to find their own way. I think too many people (not necessarily UC'rs) are too quick to jump on antidepressants willy nilly. Everyone goes through periods of depression from time to time. My ex-wife (who is an RN) used to recommend anti-depressants to everyone every time they were depressed and she often took them herself every time something happened in her life that was depressing or added stress. I know everyone and every situation is different but I have seen many people take antidepressants and they either caused other problems (almost always) or just turned them into emotionless zombies. Finding the right one and the right dosage is almost Mission:Impossible and once you start them it is almost impossible to get off them without having problems. It is a lifetime commitment once you start.

I will say though that having chronic disease can cause long term depression and that some of these meds actually seem beneficial to the UC condition itself. I fully support people that really need them to take them but I also support the people who just don't want to go down that seemingly one way road that never ends if there is another way that doesn't cause all the extra problems associated with taking them. It's not always a clear cut issue.

I don't know much about the people I don't know on antidepressants but I can say that almost all of the people I do know who have taken antidepressants (and there have been many) have all kinds of problems, either in finding the right one, dosing, side effects of all different kinds, etc. and have either had to make a lifelong commitment to them or if they come off they are right back to where they were before and have to start back up on them again. I mean you take the antidepressants to not be depressed so what's the point of taking them and then coming off? How would you even know when to come off since if you're not depressed anymore then is it because you're not depressed anymore or is it because the drug is working? I think it is as irresponsible to tell someone that they shouldn't take antidepressants as it is to tell someone that they should. It is a personal decision that people and their doctors make after considering all the facts.