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Posted 8/22/2019 10:14 PM (GMT 0)
My UC is in remission, but there has been a lot of psychological fallout. My MD, after briefly talking to me, told me that I am likely suffering from complex PTSD. Complex because the trauma and fear are ongoing. I have known that I have not been mentally well for a long time. My UC was very devastating and was like an apocalypse on my life. It could still come back. I never feel 100% safe.

I really need to see a psychologist. A couple of years ago I got into a car accident (right after coming out of a flare, if you can believe) that gave me temporary brain damage. Auto insurance would pay for a registered counsellor, who I saw a bunch of times. She was useful, but I just couldn't go deep enough with her.

The problem is that I am low income, so it seems like really good quality mental health services are out of reach. I can't afford $140 per session, or whatever it is. Even I could take out a loan, that would maybe cover 10 sessions, and that isn't enough. The kind of therapy I really need is long term.

So I don't know what to do...

There are so many woo woo "healers" out there and I am not interested in getting involved with those. I need a clinical professional, but not a psychiatrist as I have no interest in taking medication.

Can anyone offer some guidance? I am really suffering. Although my UC is in remission, it has been impossible to really have a normal life. I live in fear and anxiety almost every day and all my relationships + work are suffering.
Posted 8/22/2019 11:28 PM (GMT 0)
Can I ask why you’re against medication? Anxiety and depression are like a non stop hamster wheel. They self perpetuate the longer they go on and sometimes medication can help you break their cycle. For me the difference was realizing that anxiety and depression are not “mental” disease in that they are all in your head. It’s a biological disease and IBD disease definitely contribute and add to it. We have to take meds for our gut diseases and it’s the same for anxiety and depression. I always felt there was something wrong with me if I had to take a depression or anxiety med — that I wasn’t strong enough to just get over it. But that’s not true. As I’m sure you’ve discovered you can’t just will it away.

Ok. So besides medications there are 2 other self help tools that have really helped me. One is CBT therapy and there are a ton of books on the market. I used to be very negative and pessimistic but thru cbt I learned how to consciously change my thinking. I did that part on my own by reading a book. I looked on amazon and they have a lot of books and workbooks that you should give a try.

Also try exercise. I find that when I feel depressed I don’t want to do anything but the more I sit the worse I feel. I have to force myself to get up and go outside for a walk but I always feel better and more energetic when I’m done

All that said is there a low cost option in your area? A teaching hospital? A church counselor? What about online? A support forum? I’ve seen some ads for apps or websites. I know nothing about them tho.

Good luck. I know it’s hard and overwhelming. Small steps and hard work!
Posted 8/23/2019 12:19 AM (GMT 0)
Psychologists are tough. A lot of them are useless, and the majority you have to pay out of pocket. I've heard people mention that you could have to see quite a few before you find one that "clicks with you". How many can you see at $140 a pop? I can tell you, I personally could never afford to see any. The ones that are covered through insurance seem to be less than useful. I would have loved to see a therapist or psychologist, I still would actually, but I simply can not afford to. The best I can do is a psychiatrist, and the best of those often don't accept insurance either. Fortunately, for me, it seems like an antidepressant is the best thing to get my head out of the frame of mind it's been in lately. I accept that. If you don't want meds, I would do like Flowers said and look for low-cost clinics. We used to have one here, but it's got a backup so long at this point it's not even worth exploring. I might just go to the phychiatrist and get some meds personally. My level of exhaustion has hit the worst it's ever been and I have no doubt it's related to my bad frame of mind.
Posted 8/23/2019 1:19 AM (GMT 0)
I had a great psychologist & was also on medication. I had never been to one before & had no idea what to expect. It took a couple of visits to relax a bit. I was fortunate, she had a teen with a chronic illness & she could relate. My insurance paid for me to see her. If you have bad anxiety, talk therapy will not have much effect, you need to learn other coping skills.

I am going to guess you have no insurance coverage. I would look for someone that has a sliding fee schedule if you have no insurance. Free clinics are few & far in between & have long waiting lists.

I hope you can find some help.
Posted 8/23/2019 1:51 AM (GMT 0)
Mark,
Maybe you can reach out to the CCFA,
They should be a good resource for help.
Posted 8/23/2019 3:05 AM (GMT 0)
I agree with Flowersgal and NSSG. I fought medication for a long time and last year had to cancel a trip to Italy the day of due to a flare. I nearly had a nervous breakdown and after c diff and flares off and on for a few years I had bad PTSD. Last November I finally agreed to try Lexapro (more for my family than for me) and it’s been the best thing I’ve ever done. It has helped the IBS tremendously which in turn calms me down. I went to Italy for 3 weeks this past May. I tried many months of therapy with a great psychologist but I would not have overcome the anxiety without the Lexapro. Therapy helped but there’s something about IBD/probably mind gut connection that’s hard to overcome. You are not alone!
Posted 8/23/2019 12:27 PM (GMT 0)
You need to start by making the decision to gain control of your mental health. Much like starting an exercise routine for your physical health, you need to start "exercise" for your brain. If you have not already tried it, learn to meditate. It is the single easiest thing you can do to see real, palpable change in the way you think. It takes some practice but is worth the effort. Positive affirmation is also helpful but needs to be an every day habit.

Finally, I would look into EMDR. It is very effective for trauma and PTSD and can be completed in only a couple of sessions. I know a half dozen or so people who swear by it. Google it. Finally, much like UC medication, anxiety medication can help even though nobody wants to take it.
Posted 8/23/2019 6:42 PM (GMT 0)
::climbs up on my soapbox:: this discussion brings up a sore point for me. I would so like to erase the term “mental illness” from our vocabulary. Because “mental” automatically makes you think of the mind. So subliminally saying it’s all in the mind. It’s such a negative connotation to me — in that we should be able to just will it away but since we can’t we must be weak mentally. It’s just not true.

This is a brain disease in the chemicals and wiring in our brains. I do believe that relearning techniques to alter our thinking help a lot but for me the biggest help has been a medication to help in getting over the hump.
::climbs down:: 😀
Posted 8/23/2019 9:48 PM (GMT 0)
Medications don't work for me. They just numb me out and then down the road I get 10x worse. Neither do self-help books. Actually, self-help books just made me worse because they are too simplistic. I need someone who is well versed in clinical pathology to sit down and talk with, who will help me psychoanalyze my life. I was also looking into EMDR but it's quite expensive also.

I've seen many different kinds of health professionals over the years: chiropractor, naturopath, chinese medicine doctor, physiotherapist, osteopath, etc. Most don't charge nearly as much as a psychologist. To me $140/hr is not justifiable, and most are even more expensive than that.

I unfortunately live in a city where mental health resources are very scarce. The only hospital based offerings are psychiatrists, and you need to attempt suicide (or be very close) to get fast tracked to see them.

It's alarming to me the state of mental health care in North America. There have been so many cuts over the past 25-30 years, no wonder people are so distraught.

Feeling pretty screwed here.
Posted 8/24/2019 1:02 AM (GMT 0)
not answering your question, just asking one ------------ do you have any kind of family support system ? and I also am a big advocate for exercise - do you have access to a safe walking place - do you have an animal shelter that needs dog walkers ?

I know it's hard sometimes to do ANYTHING besides just survive - I think most of us have been there - wish I had something more to offer other than saying " hang in there "
Posted 8/24/2019 4:50 PM (GMT 0)

MarkWithIBD said...
Medications don't work for me. They just numb me out and then down the road I get 10x worse. Neither do self-help books. Actually, self-help books just made me worse because they are too simplistic. I need someone who is well versed in clinical pathology to sit down and talk with, who will help me psychoanalyze my life. I was also looking into EMDR but it's quite expensive also.

I've seen many different kinds of health professionals over the years: chiropractor, naturopath, chinese medicine doctor, physiotherapist, osteopath, etc. Most don't charge nearly as much as a psychologist. To me $140/hr is not justifiable, and most are even more expensive than that.

I unfortunately live in a city where mental health resources are very scarce. The only hospital based offerings are psychiatrists, and you need to attempt suicide (or be very close) to get fast tracked to see them.

It's alarming to me the state of mental health care in North America. There have been so many cuts over the past 25-30 years, no wonder people are so distraught.

Feeling pretty screwed here.

The good thing about EMDR is it can be as few as two sessions. Not more than 6 if I remember correctly.
Posted 8/24/2019 5:11 PM (GMT 0)
<Actually, self-help books just made me worse because they are too simplistic >

I agree that most are but I encourage you to give CBT a try. Cognitive Behavioral Therapy can help you be more aware of thoughts and how harmful “all or nothing” thoughts can be. It’s hard work.

As an example you write down a negative thought such as “I’ll have another flare and need to have my colon removed”. Then you list all the answers if that was a true statement. Like you would be miserable for the rest of your life. Then for each of those you list a counter argument such as well lots of people learn to live without a colon and are content with their lives.

That’s simplistic example. But every day you would list all your bad or negative fears or thoughts and then what if arguments or answers in favor of and against that statement. Eventually you learn to recognize all these thoughts as they’re happening because most of the time we’re unaware of them and their effects.

I found it really helpful.
Posted 8/25/2019 3:16 AM (GMT 0)
FlowersGal, can I ask what CBT book you would suggest?

Mark, I hear you that medication just numbs you. I don't mean to argue with your statement, but: it's HARD to find the right anxiety/depression medication, and it often takes several tries to find the right one for you. Once the right one is found, it can REALLY help. I was lucky and it took me just two tries to find an anti-anxiety med that works well with my brian, but I have family/friends that had to go through several... but it was worth it for them. Our brains are just like the rest of our bodies: collections of chemicals, and sometimes they need a chemical boost to get back to normal.
Posted 8/25/2019 3:47 PM (GMT 0)
It was years ago (maybe 30 years?) so there a lots more books and workbooks out now. But the one I used was “feeling good” by David burns. Not sure if it’s been updated since then. At the time it was a fairly new technique but since has become a widely used tool by therapists. Hence more books. I imagine they’re all pretty good but I haven’t checked them out
Posted 8/26/2019 6:51 PM (GMT 0)
I've done CBT before. I don't need my story reframe, I just need to understand and integrate it.

Medications are good for me. I have an unusual metabolism. It's the same reason why all UC medications failed. My body does not do pharmaceuticals very well.

Good to know that EMDR can make quick progress. I am considering taking psychedelic mushrooms as a therapy, but I feel I need to do this with an actual therapist.

My anxiety is so high these days I can barely function.

I don't have the presence of family members. They all live thousands of miles away because I deliberately moved away from them. My family is toxic. I have received some financial support from them over the years but apart from that I am alone. I have good friends but I live in a very socially dysfunctional city where even able people have a hard time forming communities.

I exercise about 3-4x a week. I lift weights, swim, go to dance classes. Exercise is my only saving grace. When I was so ill that I couldn't exercise, my mental health collapsed.
Posted 8/26/2019 10:55 PM (GMT 0)
There are a lot of good guided meditations on YouTube specifically for C-PTSD. I would check them out. And I would up your exercise to every day. Therapy was never helpful for me. Meditation and exercise are though.
Posted 8/26/2019 10:57 PM (GMT 0)
Also, not all self-help books are simplistic. I really like ACT (Acceptance and Commitment Therapy). It's really great for anxiety. The Happiness Trap and You Are Not a Rock are both great books.
Posted 8/27/2019 5:07 PM (GMT 0)
Mark....CBT takes a long while. It allows, through learning process of onself, to have alternate options of what to think instead of a mindset of automatic perceived expectations and scenarios.
I suggest you trying it again or seeking info, workbooks, online connections and see if it makes more sense in the situation you're in at this time.

The part that sucks about it is the realisation of self, responsibility for out thoughts, reactions, behaviour and reactions. There is a loss of freedom during unlearning those automic thoughts, reactions, etc while gaining decision making options. Confusion happens much of the time once the awareness becomes part of it.

Our hardwiring doesnt really change, but our awareness and allowing options within that hardwiring is what allows us more freedom of choices.

It's good you have distanced yourself from family.

q
Posted 8/28/2019 4:39 AM (GMT 0)
I have so many books that address REBT and books about meditation. Many which are mentioned here.
2 free things to look at on the internet are http://www.smartne.org/worksheets/ABC_Worksheet.pdf
This is an rebt worksheet from a SMART recovery website. ABCD (like someone said earlier) I’m super anxious this week because my doctor prescribed prednisone, I’m scared, I’m not functioning well, I feel high anxiety and I haven’t talked to the doctor yet. So I do this worksheet daily for relief. People with substance use issues often ave distorted thinking. This is an exercise like the one suggested above. It’s ok to feel afraid and let your brain go through that, but we can learn to control our brains by negotiating with them. Byron Katie (she’s a little woo wooo spiritual ) has a work sheet, it’s called “the work” and it’s a similar concept.

I also love the book (I have it on audible and a hard copy) The Mindful Way Through Depression with Mark Williams and Jon Kabat Zinn among others. It’s simple and scientific. Meditation helps us learn to have more control over our brain. The guided meditations include a “difficult emotions” meditation, which I like because it allows me to allow my feelings, without letting them control me. It’s boring and needs to be done every day, and when I’m committed it helps me.
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