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IBD and Mental Health Support Group

I doubt there are many people who have been diagnosed with a chronic illness who haven't had their mental health take a massive blow. I want to start this support group for all people who have struggled with their mental health before, during and after their diagnosis.
 
Sounds like a very good idea. I've struggled with depression for...most of my life at this point. I was coping with the Crohn's pretty well for the first year, but between that and migraines, it's been really dragging me down. I've been giving a lot of thought lately to building mutual support, too, since I feel like the standard around here of seeing a therapist once every two weeks leaves a pretty big gap.
 
Hello, I was diagnosed with UC when I was 21 (31 now) and last year my doctors at Vandy told me I might have Crohn's instead. I have struggled with major depressive disorder and anxiety (touch of ocd, I count things when I am experiencing more stress than usual) since I was 17. Lately I feel like I am agoraphobic because I am SO used to being sick and not wanting to leave the house. I am on remicade every 7 weeks and daily Lialda (not sure how to make the little list on the bottom of comments where I list my meds and diagnoses, anyone have advice?) and I'm not sure if those worsen it but most days I could not care less if I get outside at all. I used to be very social and go out all the time and now I don't even want to go anywhere by myself. Compounding this is the fact that we just relocated to VA from TN and I don't know anyone. Anyone else have this kind of problem?
 
Well, I just posted a really long post on the Multiple Illnesses and IBD before I found this support group. I suffer from depression and anxiety. I had a breakdown in 2007. And was in the hospital in 2007 and 2013. I lost my job due to "workforce reduction" in 2009. I applied for Social Security Disability in 2011 and finally saw a judge in 2013 and won my case. I am 54 years old. I get so overwhelmed with the doctors and all of the diseases/illnesses that I have wrong with me. Starting in May 2014 I started to feel worse. My IBD symptoms changed drastically, my neck arthritis was worse, my hip arthritis was worse and my joint disease was worse. The bottom of my feet even started hurting, I now have custom made orthotics in my shoes. At the beginning of May I started to feel exhausted and it was all downhill from there. I cry more now because I am so tired from going to all these doctors ( new health insurance plan, so new doctors too ). I am now seeing 6 specialists. I have anxiety and my brain can't shut off at night when I go to bed from all of the doctor stuff. Okay, call me crazy ( which I am, ha ha ) but I went through my DayPlanner the other day and I counted 47 doctor visits so far this year ( this includes Optometrist and Dentist and any Radiology stuff and the Psychiatrist. ) I know that looking at all of these "figures" gives me more anxiety, but I just cannot help it ! Now I am also in Physical Therapy for my neck ( does THAT count as a doctor ? ).

I just started collecting the SSD benefits last year. I don't have a job or a schedule or anything now. I used to work and have a normal life. I am trying to figure out who I am NOW and what my purpose in life is. What do I do now that I am disabled ( but I can still walk and talk and drive and take care of myself ). I HAVE been going to a couple of places ( free of charge ) that have classes and workshops and support groups and that has been very helpful as far as controlling my isolation ( I need socialization ), but now all these negative physical changes going on with my body I really cannot participate in these programs. I want to get back on track and get out of my apartment.
If I wasn't so tired and if I wasn't in physical pain, I may want to go to a class, but I can't right now. Thanks for listening. Sorry so long.
 
mixiestar, I've recently been going through Lyme disease and that has given me some anxiety among a number of other things, which has made me want to stay at home more than normal. I've always been a bit of an introvert, though. The aches and fatigue have also made me disinclined to go out. But, at the same time I've felt kindof isolated by it. Different sort of situation, but I've had some similar experience recently.
 
Ann, I don't know if this is a meaningful thought to your or not, and you may have been thinking of it yourself. I try to remind myself that our jobs don't define us. We get to create our own meaning. It's not necessarily an easy thing, it's not something I've accomplished, but it's how I like to look at things. But I might also be thinking in the wrong direction, and this is completely non-helpful.
I've considered applying for disability, but I've decided to try to keep working for a bit longer, I just can't go on with my current job anymore.
 
eletrikhd: Thank you for your support. Yeah, I understand what you are trying to say and I have been trying to say it to myself for the longest time. I am sort of in a transition period. I have not worked for over 4 years. I started getting SSD in January 2013. I signed up for a workshop at a local Women's Center here in town and the workshop will address some of the things that I need help with. The workshop starts in October and lasts for 8 weeks. Only a limited amount of people are allowed in this class. I am not quite sure what the exact title of the workshop is, at this time, but I think it is about women who are over 45 years old and what path they are going to take in their life. This Women's Center has helped me so much. Only women are allowed at the facility and it is non-profit and the assistance / classes are free. The whole goal of the Center is to empower women. And a licensed clinical social worker will facilitate the class. I hope this
workshop will give me some insight and some hope on what I can do with my life in the future. I know that I am capable of doing SOMETHING with my life, I just don't know what that is and how I will attain it.
 
The workshop sounds like a good place to go. I got in contact with my local Department of Vocational and Rehabilitation Services office to see if I can get any sort of guidance or help. At the very least, I will have some help with updating my resume and getting ready for interviews (I haven't been on one in 8 years).
 
dear ron: Yesterday I had about half a box of used Kleenex on my living room floor next to my recliner. I just had a lot of things on my mind and I just had to relieve the pressure by crying. I just cried and threw the Kleenex down, one by one. I live alone, so I can have a mountain of Kleenex on my floor if I want to, who cares. Keep In Touch. Take Care of Yourself.
 
PS: I am not sure if I like being called a "Senior Member". Am I am "Senior Member" because of my age ? I am fairly new to this website. I know that a person can belong to AARP when they are 50 years old.
 
Hello, I was diagnosed with UC when I was 21 (31 now) and last year my doctors at Vandy told me I might have Crohn's instead. I have struggled with major depressive disorder and anxiety (touch of ocd, I count things when I am experiencing more stress than usual) since I was 17. Lately I feel like I am agoraphobic because I am SO used to being sick and not wanting to leave the house. I am on remicade every 7 weeks and daily Lialda (not sure how to make the little list on the bottom of comments where I list my meds and diagnoses, anyone have advice?) and I'm not sure if those worsen it but most days I could not care less if I get outside at all. I used to be very social and go out all the time and now I don't even want to go anywhere by myself. Compounding this is the fact that we just relocated to VA from TN and I don't know anyone. Anyone else have this kind of problem?
I have felt the same way since I've been really sick. I've had this most of my life, autoimmune diseases but have had bad flares since 2012. I too used to be really social, now I am ashamed, embarrassed, sad, angry and could care less about social events, or going outside. So your not alone hun. Many blessings for you! I pray for your strength!
 
Ann,
"Senior member" isn't an age thing, because I am only 34 and also a senior member. Not sure what it means, really!
 
mixiestar: I was in the psychiatric hospital almost a year ago. I felt helpless and hopeless and had suicidal thoughts. I was isolated for a year before that. Nothing brought me joy. Nothing.

I am still trying to find things that bring me joy but it is a slow process. My memory, focus and concentration are not the same as they used to me. I have Major Depressive Disorder and Anxiety. I do see a psychiatrist and I am on medications. I try to participate as often as I can going to some classes and workshops and support groups. I thought by now, almost a year from my hospitalization, that I would be further along in my recovery. I sometimes wonder if I will get any joy back at all.

My sister doesn't understand my illness, even though I have tried to educate her about it. I used to love to read, so I am trying to read a book right now. I have actually made it to page 247, which is the most I have read in 2-3 years. I just want some motivation. I need a spark to go off in my head and in my heart, something to wake me up. I want to get out of this void.

I am going to a workshop in October at our local Women's Center. The workshop is called "The Second Half".

"This is a structured support group for women over 45 wanting to plan for the "second half" of life. If you are facing an empty nest or life transition, you may be experiencing a number of feelings, including relief, remorse or regret. Career focused women may be looking around, wondering why and desiring new focus or dreams. All women experience the physical, emotional, and spiritual changes that maturity brings."

Support Group Objectives are: Identify the path your life has been on thus far, Identify your values, passions, and talents. Evaluate relationships, what we do and our environment. Gain support from and provide support to other women in similar life circumstances.

This takes place once a week for two hours for 8 weeks.
Most days I can barely organize my appointments and my errands.
I don't know how I am going to identify or evaluate anything, but it is
worth a try I guess. I have been in a transitional period for over 5 years now.

Thanks for listening. Sorry this is so long. I cannot sleep tonight, well actually it is now almost 2am on Tuesday ! :eek2:
 

Spooky1

Well-known member
Location
South Northants
Senior members, like us, mean we have been posting regularly and are frequent visitors to the site, we post and respond. Think its the amount of posts within a certain time. but you don't lose senior membership status if you don't post for a while cos you're ill or something, down with depression that kind of thing. I take time out when ill with Crohn's RA, depression, stress etc.

yes, it's isolating! I live alone with this health too but maybe I prefer the less stress. Who knows if someone you want to live with is going to cause more stress or be truly supportive.
 
I wish I trusted people more, then I would have some friends. There a couple of gals here at my apartment complex that are nice to talk to. But I only feel comfortable talking with them outside of my apartment. Usually, on a regular basis, I sit outside of my apartment for 1 hour at night or 1 hour in the morning. I have a folding chair that I put right outside my front door. People who are walking their dog will talk to me and chat a bit. But I don' t feel safe or comfortable going into their apartments or them coming into my apartment. I only know their first names. I don't know anything super-personal about them. I have participated in some classes / workshops / support groups during the past year and I have exchanged e-mail and phone numbers with some people. But most of these folks have mental health issues or maybe substance abuse problems. Some people are very functional and some are not. I like all of them but eventually we all move on and do not communicate with each other any longer. I am sure a friendship will eventually come my way. Once I get out of my apartment and start communicating with folks I do pretty good. It is just getting me out my front door most days that is the problem. Having more than one health condition that affects my daily life is overwhelming and makes me very fatigued. I don't want to have lunch with someone and start whining about how sick I am. No one wants to hear that, that makes potential friends run away. I whine to my sister in e-mails all of the time ( sometimes I have to "vent ". ) My sister has MANY health conditions that affect every part of her life. I don't know how she stays focused on things. She has RA, lupus, scoliosis, Sjogrens syndome, and she survived beast cancer in 1987 ( a lumpectomy and radiation ). I think the big difference for her verses me is that she has been married for 42 years, has a daughter, son in law and 2 grandkids. And I have no one. My sister lives in Idaho and I live in Arizona. Parents both dead now. My sister and brother in law have no friends even though they have lived in the same house for 37 years. Sorry this is so long. I just got a new cell phone and I can e-mail from my phone. I have not owned a cell phone for over 4 years......they sure have changed !!!!! Have a Great Turkey Day. : - )
 
I'm struggling with a persistent flare right now and forcing myself to go to work. Had a migraine strike, and of course I have to work late tonight, too. Today's just not going well. Had to change my underwear earlier because I bled (I'm wearing disposables these days just in case anyway), I've taken 2 of my migraine meds and I'm still in pain.
It's just feeling like too much to deal with...just can't take it anymore. I know it's temporary, and really I'm just thinking of dealing with work. I'm here for another 5 hours (making it a 12-hour work day), and then I have an hour drive home. But telling myself this is temporary does not make me feel any better, even just emotionally. I just want to give up.
 

Spooky1

Well-known member
Location
South Northants
Sometimes, Crohn's disease and its extra intestinal manifestations and work just don't go. Can't you go sick during flares? We're thinking of you, especially those of us who just can't get work due to health. Good luck and get well soon, like fast.
 
I can miss a day or two at a time, beyond that I need a doctor's note. Even with not liking my job anymore, I don't feel good about missing work too much...as much as I want to stay home. I feel like I miss work a lot as it is with the migraines, being run down and achy, getting sick, or the Crohn's outright.

So I survived the night of course. I took a third med and was ok. It's just been a string of suck since. A nasty cold started up a day or two later, culminating in sinus pressure so intense that it caused another migraine last night...this time meds didn't work, so it meant a hospital trip. Luckily we live 5 minutes from the hospital. I actually felt a lot better this morning and still went to work.

I'm working on finding a new job, though...I need to find something else with less stress and more bathroom breaks.
 
I'm struggling with a persistent flare right now and forcing myself to go to work. Had a migraine strike, and of course I have to work late tonight, too. Today's just not going well. Had to change my underwear earlier because I bled (I'm wearing disposables these days just in case anyway), I've taken 2 of my migraine meds and I'm still in pain.
It's just feeling like too much to deal with...just can't take it anymore. I know it's temporary, and really I'm just thinking of dealing with work. I'm here for another 5 hours (making it a 12-hour work day), and then I have an hour drive home. But telling myself this is temporary does not make me feel any better, even just emotionally. I just want to give up.
Don't give up.
I know how you feel.
I don't even work anymore because of my physical and mental health issues.
You must be a very, very strong person to be able to get through each day as you do. I had migraines in 2006/2007 and it was terrible. I once sat in an Emergency Room Waiting Room for 6 hours. My head felt like it was going to expode ! Take care of yourself.
 
I'm doing a bit better now, but that's after things came to a bit of a head. My flare got bad enough that I was admitted to the hospital on March 27th. I missed 2 weeks of work, and timing worked out that our spring break was this past week, so that has given me some more time to rest and recover.
I have a job coach through my local Division of Vocational Rehabilitation Services who is giving me support in my job search, and she is now encouraging me to apply for disability. I'm not 100% sure if that's the route I need to go, but I know that I can't keep doing my current line of work. About two more months until the school year finishes, and hopefully I can move on then.
 
I'm doing a bit better now, but that's after things came to a bit of a head. My flare got bad enough that I was admitted to the hospital on March 27th. I missed 2 weeks of work, and timing worked out that our spring break was this past week, so that has given me some more time to rest and recover.
I have a job coach through my local Division of Vocational Rehabilitation Services who is giving me support in my job search, and she is now encouraging me to apply for disability. I'm not 100% sure if that's the route I need to go, but I know that I can't keep doing my current line of work. About two more months until the school year finishes, and hopefully I can move on then.
Don't feel that applying for Disability means that you are "giving up", that is not the case. There is a Disability thread here and lots of people there to talk to. No one on this thread, which surprises me. How can my Ulcerative Colitis NOT affect my mental health ! There is so much stress from this disease.
Everyone have a good weekend. :)
 
Hello everyone, new to this. Just wondering: Are there any alternatives to just talking to a therapist? I'm not talking about anti-depressants or other medication - but I mean is there another way a person could gain emotional therapeutic healing without having to just talk to a person they pay to listen and analyze? Thanks in advance...
 

Spooky1

Well-known member
Location
South Northants
All I can say is that those on here are often understanding and not here to judge you. all of us are here for each other. The other thing maybe is practising positive mental attitude. perhaps some you tube video's on such. I've used those, like the ones by Ekhart Tolle. It helps sometimes. I also use vitamins and minerals to try and lift my mood.

Hope this helps.
 
I've found having people to talk to, some sort of support network, is useful.
I also use https://www.moodscope.com/ to keep track of my mood. It hasn't necessarily helped me feel that much better, but it gives me perspective, and helps me understand the details of what's going on with my mood a little better.
I've also started checking out http://www.depressiontribe.com/ as well, as a forum for depression related issues. I've had a couple of good responses there from what little I posted a couple of months ago.
 
I've found having people to talk to, some sort of support network, is useful.
I also use https://www.moodscope.com/ to keep track of my mood. It hasn't necessarily helped me feel that much better, but it gives me perspective, and helps me understand the details of what's going on with my mood a little better.
I've also started checking out http://www.depressiontribe.com/ as well, as a forum for depression related issues. I've had a couple of good responses there from what little I posted a couple of months ago.
I was using depression tribe for a while, but then I got off of that website. Unfortunately the one or two "bad" people using the website as their own little playground to toy with people's minds and emotions ruin it for the sincere participants trying to get support and understanding.
 
Since I have been dealing with both problems - CD and MD since my late teens. Now 64, I have tried many ways to navigate the unexpected ups and downs of both.
Menopause caused a major breakdown and severe crisis, and have been on meds ever since. They help a lot, once you have found the right mix for you.
I don't recommend websites in general for support, especially when you are in a fragile state and need kindness and tolerance.
Seems there are always a few well established members there who make it their domain, and you are at their mercy.
Best to try one on one support on the internet. That's what I'm doing now, and it is truly wonderful.
Try your national association for Crohn's disease for this type of program. I can guarantee nobody will play mind games or make you feel worse.
Good luck.
 

Spooky1

Well-known member
Location
South Northants
I hit major issues with my menopause too. I also had to contend with my older sisters sudden onset menopause as she had aggressive cancer. My dad had cancer at exactly the same time and mum had strokes leaving her with vascular dementia. What a nightmare four years. I also had to take meds and i'm still trying to come out the other side.
 
Spooky life is terrible like that, sends you a bunch of very stressful situations at the same time. Aging is not easy either. Hang in there.
 
I have been through a lot the past 11 years and I honestly never thought I had the coping skills to get through all of the things I have had to deal with, but obviously I must have because I am still here and breathing and thinking and functioning.

I had a really bad mental breakdown in 2007. I was in the psychiatric hospital. After that I saw a psychiatrist and was prescribed psychiatric medications, but I never really came out of the "fog" that I was living with in my brain. I also had no aftercare at that time. But in October 2013 I was hospitalized again and I received a proper diagnosis and a completely different "cocktail" of psychiatric medications. And I went to an aftercare program that really helped me. I also qualified for a program here and I have available to me a Critical Care Coordinator, a Nurse, a Psychiatrist and some places where I can attend to go to classes and to socialize. This time I have come out of my "fog" and I am happier and functioning better.

I was unable to read books for quite a while, due to my loss of concentration and focus and memory. But a miracle happened early this year, when I actually read an entire paperback novel. I have read 14 books during the past 4 months. Like I said, it is a miracle and I finally have something back that I used to enjoy so much. Add that to the 30 pounds I have lost this year and it appears my year is starting off to a great start. : - )
 
Thanks Ann for your candid story and the good outcome which finally happened for you. I'm so glad.
My one on one support for the CD is working well too, makes a huge difference in my overall well being and flexibility to stress.
I think my message is never give up trying to all. :)
 
There is a local Crohns/Ulcerative Colitis Support Group in the city I live in. I have never gone to one of their meeting. Has anyone attended a support group like this ?
 
Thanks for sharing about your mental health problems. You know you are not alone but many others don't share this aspect of our diseases. I have been in therapy for the last 5 years. While I didn't need to go into a hospital my Internist was making me come in to see her monthly until I found a good therapist and psychiatrist. It happened after my colonectomy for UC pan colon and diverticulitis. I was in the hospital 3 times longer than expected. It was hell.

Our guts really are our 2nd brains as the colon helps in production of serotonin, which the lack of brings on depression. I was diagnosed with major depression disorder and PTSD along with generalized anxiety disorder. I had EMDR treatment for PTSD and for that we had to go back to the first trauma in my life and that was way back to my childhood and abuse by my mother after my parents divorced. The surgery didn't actually cause it but it tipped the scale as to how much trauma I guess I could deal with in my life.

I know what you mean about brain fog, not being able to read a book and you have helped me. I know I can get better but it has been a struggle. I first had a j-pouch formed inside when my colon was removed. It never worked as it should. Without going into all that was wrong, a lot of problems occurred and my GI at the Mayo Clinic referred me to a surgeon there and we all met deciding the j-pouch had to be removed. I have had 5 surgeries for this UC related problems and had had 2 other abdominal surgeries before then.

I am doing better after the removal but am still in therapy and seeing a psychiatrist who prescribes my medications. People need to know that we can't just talk ourselves out of mental illness. Chronic disease and resulting chronic pain wears us down. I have not given up hope but it is difficult. Fortunately our children are adults. I have fibromyalgia and peripheral neuropathy and so on.

So good for you for getting the help you needed and for reading those books! :thumright:
 
:yrolleyes:😎lets get this group going again I think it will help a lot of us I know it will help me! The depression that goes along with this/these diseases is devastating and I know many of you could help me. And I hope I can help you!🤝🌈🏝
 

Attachments

Juulez - I think that's a great idea!

What do you find is the toughest mentally to deal with that triggers your depression and also anxiety?

For me it's just really tough being always tired (want sleep all day), socially isolated and being house bond way too much.

Do you see a good psychiatrist? And are you currently on any medication that you find helpful?
 
Oh I cry all of the time! But I am so lonely and being stuck in the house doesn't help. It's like drs hospital pharmacy home. Couch or bed. I feel like I have no life. Recently my pain has started making me see things thank god for s good psychiatrist. I take Zoloft seroquel ativan trileptal. That's all for psych. Enough huh? Depression sucks sometimes I can't get out of bed shower anything. Oh Crohn's disease I love you...lol
💜Julie
 
Same here, also stuck in the house days on end. I tend to get really quiet, passive and suicidal almost when things look dark. Rarely cry. Just want to drug myself up and escape reality all together. I do sometime.
Seem like you going through an agonizing period. Hopefully a successful surgery can be done soon.
 
Being lonely is probably just as dangerous as the disease itself.
We get stuck in our heads all the time. And also being sick with crohns sometimes is pure torture on top of it.
 
It's nice to know your not the only one! But goodness with as sick as we all get sometimes how can you not have some psych issues! I spend so much time alone in bed in pain that isolates me leaviving depression and I have awful anxiety and scared to go far from home. Sometimes I think I feel better in the hospital with someone to take care of me..and that eases the anxiety a bit but I hate the hospital makes no sense..
 

Attachments

Lynda Lynda

Member
:yrolleyes:😎lets get this group going again I think it will help a lot of us I know it will help me! The depression that goes along with this/these diseases is devastating and I know many of you could help me. And I hope I can help you!🤝🌈🏝
Thank you for trying to keep this conversation going. No one has posted here for a year :cry: Where's my peeps ! Good Grief, my old Ann Morgan posts from 2 years ago are still here :ack: Take Care.
 

cmack

Moderator
Staff member
I have had generalized anxiety disorder ever since my illness began. I can relate to anyone who feels terribly awkward in public places. I have fears of an accident in public, (haven't we all lost count?) I am currently pushing myself past my comfort zone with too many appointments. My only option is to fast for 24 hrs before I have to be somewhere to minimize chances of troubles. It sucks, but I think it is necessary for me to make improvements and keep toughing it out. Some days it really feels like I should go and hide out in the mountains in a little hermit's cabin. Just me and a couple hound dogs would be perfect. Hey, a guy can dream right?
 

Spooky1

Well-known member
Location
South Northants
Cmack, i starve myself too. It just allows me more confidence if i go out. Any journey is difficult though.

I am still suffering with MH issues. Like many, i just keep it all in. I really don't have anyone to talk to about things either. I'm trying CBD oil without the THC. Sincerely hope it works. I am sleeping a bit better at the moment, that helps a bit.

Lynda, Lynda, are you Ann Morgan? Ha ha, you've changed your name then?
 

Lynda Lynda

Member
Yes, the last time I was here I used the name Ann Morgan, but my real name is Lynda and so this time I decided to just use my real name. I had to drive to the grocery store real quick this morning and then back to my apartment without having an accident,so that was a victory. I go to the doctor's office tomorrow. I am really tired, so I am going to go now. Have a good day. PS : Don't read my old posts, they are crazier than the ones I am writing now.:runaway::runaway:
 
Sometimes I get ready to do something and turn around and find out i have already done it. Does this happen to anyone else? My father had dementia.
 

cmack

Moderator
Staff member
Some of my medications cause short term memory issues. I have fairly often forgotten small things like that when on them. Gabapentin was particularly bad for me, others have no problems with it.
 

Spooky1

Well-known member
Location
South Northants
I find it shocking that i have been this way for a while now. It embarrasses me even if no one else is around. I do question my senses. You're certainly not alone with this.
 

Lynda Lynda

Member
Sometimes I get ready to do something and turn around and find out i have already done it. Does this happen to anyone else? My father had dementia.
This kind of thing happens to me all the time, I walk into my kitchen and don't know why I walked in there! I get sick of doctors or people saying "it's old age" when I am only 57 years old ! My mom's memory was "sharp as a tack" when she was in her 80's. And two days before my dad died he was "all there." Forgetting things happens to everyone. Sending you a :pika:
 

Lynda Lynda

Member
Oh, yes, medication can put you in a "brain fog." I did not know that for years. I had a Psychiatrist 10 years ago that had me all doped up on strong psyche meds and OMG that dangerous Lunesta sleeping pill. And I was employed at that time and couldn't even function at work. The psychiatrist I was seeing 10 years ago misdiagnosed my condition and so he was giving me drugs that were wrong for me, I was so sick that I didn't know any better to get a second opinion. I wasted 6 years of my life being messed up on those drugs and never getting better. As it so happened changes in my life in 2012 ended up with me discontinuing all my psych meds. Even though I suffered severe isolation after weaning off my meds it was the best thing that could have happened to me. I ended up in the hospital in 2013 and I was properly diagnosed and was given the proper medications, so a lot of bad things had to happen for a good thing to happen. I have been on the same meds for 4 years and regularly see a psychiatrist 4 times a year and that is working out for me just fine. I want to thank the case worker at the hospital for helping me to help save myself because that After Care Program was something that I needed years ago but my health insurance wouldn't cover it. Life is sure weird. When I had a job and I had Aetna Health Insurance the coverage for hospitalization and Aftercare programs and psychiatrists and psychologist was severely limited....that was in 2007. I had to hit rock bottom with no health insurance and no source of income whatsoever to qualify for a program for poor people to get help for their mental health problems. I am rambling again, so I will leave now. Take Care.:rosette2:
 

Spooky1

Well-known member
Location
South Northants
Bobbet, when you comment like this, there is the 'Post Quick Reply' or 'Go Advanced' just below this message block. Click on go advanced and choose your emoji.
 

Lynda Lynda

Member
Oh, I have new emojis 😄.
🍟🍔 Wish I could eat this.
🍻Wish I could drink this.
☕I had to give up drinking coffee. Bummer.
📱🎧 I love my headphones and new phone.
🛏 I had better go to bed now.
🚽 There is a toilet emoji. Ha Ha.

Lynda
 

Lynda Lynda

Member
Tonight I am regretting all the stupid things I have posted on this forum. 🤐

It's just a bunch of rambling babble. 🤐

Sad. 😕
 
For my own expierence, I didn't have any real mental health problems until I was diagnosed with crohns disease and some time after the realization sunk in. Then it was being pregnant with my kids and having crohns disease, they were all three born premature and I swore up and down it was my fault 100%. When I got over that, which this one still gets to me is when I cant actually get up and go play with my children 10,8,6 years old.. Im 29 and I feel like I should be able to do these things. My husband gets annoyed with me always being sick (or so i think) the list goes on. Job thing too.. I used to work ..

The thing that gets me the most into my "depressed" state is that my husband was in the military for 13 years and had to get out due to me always having issues with my health (i have random unknown seizures as well as crohns disease). He didn't want to lose his career and is having a really hard time finding job out here in CA (we were in CT). I try to tell myself its not 100% my fault but its only been about a year since he got out and still hasnt been able to find a stable job, we ended up at my parents house with our three kids...
Health issues aren't just physical..But getting better day by day trying to stay positive!

Just wanted to add I have been diagnosed with depression and anxiety, which i have been on the same medication for years... A couple hospital stays for it.
 
Last edited:

Spooky1

Well-known member
Location
South Northants
I really feel for you Jess, it's such a sad situation. I'm so pleased i chose not to have children. These days i only have me to look after and that's hard enough. Sincerely hope things get better.
 

Lynda Lynda

Member
Jess, I have been to the hospital too. I suffer from Major Depressive Disorder and Anxiety and I also take medications.
You have my support. Take Care. 💕
Lynda
 
Jess, I definitely understand your feeling. My husband gets ticked at me sometimes to, especially when I am sick and not feeling like doing anything. Like Lynda, I have DX'd major depression and anxiety. There are days where I just don't want to get out of bed, and when I do, it is to move to the lazy-boy. Today was a good day though and we actually went out to dinner. I'll probably regret it, but damn it tasted good! LOL Anyway, know that you have people here that care.

Jason
 

Lynda Lynda

Member
Peeps !

Well, I go to a "clinic" to see a psychiatrist. My appointment was scheduled for March 30th. I arrive and find out my appointment had been changed to April 13th and they did notify me of this change. I was in tears in their lobby. I was feeling physically sick before I arrived for my appointment because of my Crohn's and I showed up in my pajama bottoms and a t-shirt ! I put in all that effort to get to my appointment on March 30th on time ( and without having a diarrhea emergency on the way there. )

My April 13th "psychiatrist" appointment was with their Nurse Practioner because their psychiatrist was no longer working there. A clinic with hundreds of clients with no doctor ? The Nurse Practioner and I talked and she refilled my prescriptions for 3 more months. I went home without a three month follow-up appointment.

I call my clinic this week. When am I going to get to see a psychiatrist for my next appointment? I am told that they only have a part time, 20 hour a week, psychiatrist working there right now. They are still looking for a full time psychiatrist.

I was told today that the soonest I may be able to get an appointment with their current, part-time, psychiatrist isn't until September. That is unacceptable because my appointments are supposed to be scheduled for every 3 months. It's not my fault they cannot find a doctor. Hundreds of people there need help.

[ I am not a big fan of "Nurse Practioners" and the gal I saw on April 13th is not a psychiatrist. The are Psychiatric Nurses that are qualified to treat folks with behavioral health issues, but never a regular Nurse Practioner. ] I understand these clinics are surely filled with employees who are over-worked and underpaid and they have to deal with some pretty unstable clients a lot of the time, so it is not as though I have no compassion for them. [ sigh ]

My mental health situation is stable at this time, so I will be okay. My medications work. This "clinic" is a special program I qualified for and is free to me. They bill Medicare for their services. They are part of an organization that is called the "Regional Behavioral Health Authority" for the County I live in.

The reason this psychiatrist appointment situation is bothering me is because recently the inept staff at my Gastroenterologists office screwed up so badly on just getting one piece of paper faxed over to my Humira Patient Assistance Program last month that my Humira Nurse Ambassador actually had a Humira representative sent to my Gastroenterologists office to make sure my Gastroenterologists staff knew what they were doing ! The staffs incompetence delayed my Humira medication order, so I was taking my 6mp pill for a month before actually starting my first loading dose of Humira. My Gastroenterologists treatment plan is the 6mp pill along with the Humira. I understand that I am extremely blessed by this free Humira and I have health insurance coverage, but why do I have to make many phone calls to many people to get things done. Ridiculous !

In general, I am sick and tired of people not doing the job they are getting paid to do. I worked my a** off for 30 years and if I had screwed things up I would have been fired. [ ugh ] Its so frustrating and this stupidly happens everywhere, every day.

I wish I could eat a root beer float right now, but I can't because my body is being held prisoner by something called "Crohn's."

🤬
 

cmack

Moderator
Staff member
I'm so sorry that you have to deal with this, Lynda. That just isn't right. I am very happy that you get your humira for free though, I just hope it all comes together for you soon. You have my support bud. The medical system here and elsewhere was designed by the government of the day and they always just screw everything up... Hugs.
 

Lynda Lynda

Member
Well, my last post here was 3 months ago and I still feel the same way as I did then !!

Title of my post: Stress

I filed a grievance against my clinic. In 2018 there have been major changes in the clinic staff. No one calls me back . Problems with scheduling appointments, leaving me just sitting at home wondering if I will ever be scheduled for an appointment in a timely manner. A new Psychiatrist there I have yet to meet and it is 9 months into 2018 ( I saw an NP and a part-time Psychiatrist this year. ) (Since when is an NP a "Psychiatrist.") My Case Manager has changed and I was never informed. They changed an appointment from September to August and gave me 19 hours notice.

There was a conversation between the grievance people and my clinic. It is pretty much a "he said, she said" situation. I gave the grievance people my information and my interpretation of the situation, as did the clinic. No disciplinary action was taken against the clinic, but it felt good for me to at least have my voice heard !! Hoorah.

This is not mental health related, but is related to anxiety and stress.....It is about my Gastroenterologist office ( specifically the FNP I see frequently but dont really care for. ) She keeps insisting that I discontinue taking my Protonics because it is bad for my bones. I have been taking acid reflux medication for years. She told me in March to stop taking it, I did and I ended up in the ER!! I know protonics ( ppi ) are bad for the bones and I know I already have osteoporosis and osteopenia.

I called my Gastroenterologists office on Friday and gave the medical assistant some information to pass on to my Gastroenterologist doctor about this FNP, because, once again, I needed my voice to be heard. My information was this.....
1 ) The FNP needs to stop insisting I stop taking my Protonics because I get so sick I end up in the ER and I am not going through that again. No OTC stuff works.
2 ) The FNP and Gastroenterologist ARE NOT THE PRESCRIBERS OF MY PROTONICS, MY PCP IS THE PRESCRIBER. So why is this FNP telling me to discontinue a medication that she does not even prescribe.
3 ) My Endocrinologist monitors my hypothyroidism AND my bones. She knows what meds I take, my health conditions, surgeries, everything. I had one Reclast infusion for my bones a while back. I get yearly DEXA scans and I take Vitamin D3. She is a great doctor. She monitors my osteopenia and osteoporosis, so why is this FNP sticking her nose into this.

The FNP / Gastroenterologist are in charge of monitoring my CROHN'S. I have Specialist Doctors for everything and that works out just fine, as a Specialist Doctor has been educated in what they are practicing. I just wanted my voice to be heard, so I hope my Gastroenterologist actually reads my message.

And last, as far as my apartment complex and the new owner and new management company.....I have had to put up the white flag of surrender, as no amount of my time of effort would result in resolving any issues on this property. I give up. I give up.

Lynda
 
:hug: Lynda, :hug:

I certainly feel your issues! Just remember, we are here for you!

I am having the same issue here with my psych clinic trying to see the right person for the job. They can't seem to figure out whether I am majorly depressed/anxious or if I am bi-polar! :shifty-t: I think it is just a bit of depression because a year ago today I was working full time driving trucks, relatively healthy and functioning somewhat normal, what ever that is now-a-days. For some reason they think that my taking a two week rx of muscle relaxers in one swallow has something to do with it! :ylol:

As for my GI office, once i told them that I had an issue with the NP and her attitude, I have never seen/heard from her again. :dusty: They are nice enough to make sure she leaves me alone.

If you don't mind my asking, what's going on with the apartment complex? I understand your "surrendering" there, sometimes you just have to figure out which battles are worth the stress and hassle.
 

Lynda Lynda

Member
Thanks for replying. 😊

First of all, I am sorry that you have had to deal with doctors, NP's and mental health. In 2007 I believe I was misdiagnosed with bipolar by a psychiatrist ( not a clinic psychiatrist, one in private practice. ) He prescribed me very powerful drugs that wasted 6 years of my life drugged up and never getting any better. It wasnt until I went broke $$ and had no health insurance and couldn't buy the medicines that I got better......well. shit got way worse BEFORE they got better ( isolation from people, severe depression and the an 11 day stay in psyche ward) Once I was properly diagnosed with Major Depression, and NOT bipolar was I given the correct medications and started to get my life back. ( During this time I also applied for SSD and was approved. ) 🙂

So, if I had not ever gone off those terrible strong medications I would still be in thel Twiilight Zone. 😳 The last 5 years for me have given me more of a "normal life" but still is hard to find joy in much of anything, but I can function real well and am stable.

I hope you find out your correct diagnosis, really until you get the right diagnosis can they prescribe the right medications but also you may need counseling. My clinic has places to go to socialize with my peers. But I have tried that and it's just like being in a day-care retirement home.....some classes to learn and reinforce coping skills ( Cognitive Behavioral Therapy ) but then art and bingo and "field trips....I'm done with that crap. One good thing I learned is Cognitive Behavioral Therapy. I learned these skills in the Hospital and an aftercare program. You can learn it one-on-one with a therapist.

That's enough of my ranting and rambling 😮

Take Care and Keep In Touch 🌻
 
Peeps !

Well, I go to a "clinic" to see a psychiatrist. My appointment was scheduled for March 30th. I arrive and find out my appointment had been changed to April 13th and they did notify me of this change. I was in tears in their lobby. I was feeling physically sick before I arrived for my appointment because of my Crohn's and I showed up in my pajama bottoms and a t-shirt ! I put in all that effort to get to my appointment on March 30th on time ( and without having a diarrhea emergency on the way there. )

My April 13th "psychiatrist" appointment was with their Nurse Practioner because their psychiatrist was no longer working there. A clinic with hundreds of clients with no doctor ? The Nurse Practioner and I talked and she refilled my prescriptions for 3 more months. I went home without a three month follow-up appointment.

I call my clinic this week. When am I going to get to see a psychiatrist for my next appointment? I am told that they only have a part time, 20 hour a week, psychiatrist working there right now. They are still looking for a full time psychiatrist.

I was told today that the soonest I may be able to get an appointment with their current, part-time, psychiatrist isn't until September. That is unacceptable because my appointments are supposed to be scheduled for every 3 months. It's not my fault they cannot find a doctor. Hundreds of people there need help.

[ I am not a big fan of "Nurse Practioners" and the gal I saw on April 13th is not a psychiatrist. The are Psychiatric Nurses that are qualified to treat folks with behavioral health issues, but never a regular Nurse Practioner. ] I understand these clinics are surely filled with employees who are over-worked and underpaid and they have to deal with some pretty unstable clients a lot of the time, so it is not as though I have no compassion for them. [ sigh ]

My mental health situation is stable at this time, so I will be okay. My medications work. This "clinic" is a special program I qualified for and is free to me. They bill Medicare for their services. They are part of an organization that is called the "Regional Behavioral Health Authority" for the County I live in.

The reason this psychiatrist appointment situation is bothering me is because recently the inept staff at my Gastroenterologists office screwed up so badly on just getting one piece of paper faxed over to my Humira Patient Assistance Program last month that my Humira Nurse Ambassador actually had a Humira representative sent to my Gastroenterologists office to make sure my Gastroenterologists staff knew what they were doing ! The staffs incompetence delayed my Humira medication order, so I was taking my 6mp pill for a month before actually starting my first loading dose of Humira. My Gastroenterologists treatment plan is the 6mp pill along with the Humira. I understand that I am extremely blessed by this free Humira and I have health insurance coverage, but why do I have to make many phone calls to many people to get things done. Ridiculous !

In general, I am sick and tired of people not doing the job they are getting paid to do. I worked my a** off for 30 years and if I had screwed things up I would have been fired. [ ugh ] Its so frustrating and this stupidly happens everywhere, every day.

I wish I could eat a root beer float right now, but I can't because my body is being held prisoner by something called "Crohn's."

🤬
I can relate to feeling "held prisoner" by your body!!! The thing with Humira is realtively normal. The first time I ordered it it took 6 weeks for all the paperwork to get sorted out...while I was suffering. Anytime I switch insurance I start bugging the specialty pharmacy a month in advance, and two weeks for regular orders. I also try to keep track of when the yealy prior authorization is due to start early on that...FUN! I feel like I have to babysit the pharmacy, doctor, and insurance to make sure everyone is working on their part so it doesn't sit around for a week or two. No one appreciates that, but it seems to work 🤨
 
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