Share Facebook
Crohn's Disease Forum » Support Forum » IBD and Mental Health Support Group


 
07-10-2014, 08:43 AM   #1
barbie_ferrari
 
barbie_ferrari's Avatar
 
Join Date: Jul 2014
Location: Canberra, Australian Capital Territory, Australia

My Support Groups:
IBD and Mental Health Support Group

About this 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.

Members

AFM's Avatar AFM, allicat99, andrew112233, Ann Morgan, Bailee208's Avatar Bailee208, barbie_ferrari's Avatar barbie_ferrari, BrennieJoyce's Avatar BrennieJoyce, CeeCeeGo's Avatar CeeCeeGo, cowgirlc, crohnsfightergirl's Avatar crohnsfightergirl, Elektrikhd, Grant's Avatar Grant, Juulez's Avatar Juulez, KimboHiggs's Avatar KimboHiggs, laura75, leibee's Avatar leibee, Marie23's Avatar Marie23, mixiestar's Avatar mixiestar, NeverDull's Avatar NeverDull, newbrite, Pacerdhs, ronroush7's Avatar ronroush7, sammygss52's Avatar sammygss52, Spooky1, TylerMarksberry, Z Mac's Avatar Z Mac
07-21-2014, 01:36 PM   #2
Elektrikhd
Senior Member
 
Join Date: Nov 2012
Location: Washington, New Jersey

My Support Groups:
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.
__________________
Crohn's dx in 2012, 19 days hospital
Winter 2015 Flare, 5 days hospital March, meds adjusted
(unDx flare 2009 caused by Zyrtec; suspect mild disease in 1990, age 6, followed by remission)

depression 2000, migraines 2012, glaucoma 2014

Humira (40mg/week)
Asacol (800mg 3x/day)
Prednisone when flaring
assorted supplements

Topamax (migraine)
Sumatriptan/Sumaval (as needed, migraine)
Latanaprost (glaucoma)
Viibryd (depression)
08-11-2014, 11:06 AM   #3
mixiestar
 
mixiestar's Avatar
 
Join Date: Oct 2013
Location: Lorton, Virginia

My Support Groups:
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?
08-13-2014, 09:37 PM   #4
Ann Morgan
Senior Member
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.
08-13-2014, 10:32 PM   #5
Elektrikhd
Senior Member
 
Join Date: Nov 2012
Location: Washington, New Jersey

My Support Groups:
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.
08-13-2014, 10:42 PM   #6
Elektrikhd
Senior Member
 
Join Date: Nov 2012
Location: Washington, New Jersey

My Support Groups:
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.
08-17-2014, 12:02 PM   #7
Ann Morgan
Senior Member
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.
08-19-2014, 11:37 AM   #8
Elektrikhd
Senior Member
 
Join Date: Nov 2012
Location: Washington, New Jersey

My Support Groups:
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).
09-15-2014, 11:19 PM   #9
Ann Morgan
Senior Member
Since this forum is about IBD and Mental Health I have a recommendation for a website that I have been using since May 2014. It is called www.depressiontribe.com.
09-15-2014, 11:31 PM   #10
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I am not sure if this fits this category but on occasion, out of the clear blue, I find myself weeping.

2
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
09-16-2014, 12:01 AM   #11
Ann Morgan
Senior Member
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.
09-16-2014, 12:04 AM   #12
Ann Morgan
Senior Member
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.
09-16-2014, 12:42 AM   #13
Guest17
 
Join Date: Aug 2014

My Support Groups:
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!
09-16-2014, 01:18 AM   #14
tzvia
Forum Monitor
 
tzvia's Avatar
 
Join Date: Mar 2012
Location: Philadelphia, Pennsylvania
Ann,
"Senior member" isn't an age thing, because I am only 34 and also a senior member. Not sure what it means, really!
__________________
Diagnosed with Crohn's in 2007, symptoms since 2000.
Hospitalized with bowel obstruction 8/2012
Ileocecectomy with 9" removed 10/2014


Current meds: Entocort, Questran
Past meds: Prednisone, Humira

09-16-2014, 03:51 AM   #15
Ann Morgan
Senior Member
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 !
09-16-2014, 05:58 AM   #16
Spooky1
Forum Monitor
 
Join Date: Sep 2011
Location: South Northants, United Kingdom

My Support Groups:
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.
11-24-2014, 06:50 PM   #17
Ann Morgan
Senior Member
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. : - )
12-22-2014, 08:37 AM   #18
CeeCeeGo
Forum Monitor
 
CeeCeeGo's Avatar
 
Join Date: Oct 2012
Location: Wirral, UK

My Support Groups:
Just wanted to say hello to everyone and good wishes for the holidays.
Carol
__________________
Carol

DX - June 2012 with mild/moderate Crohns. In July 2012 bowel perforated unexpectedly and needed emergency surgery.
Current meds/supplements - Budesonide (reducing dose over 3 months), B12 injections (every 10 wks), Vit D tabs 800iu x daily, Ferrous Sulphate 200mg every day, Folic Acid once a week
Previous meds - Allergic to Azathioprine, 6MP, Pentasa & Asacol, Methotrexate injections (didn't work). Stopped Humira after 2 years due to ineffectiveness.
12-30-2014, 06:45 PM   #19
Ann Morgan
Senior Member
Hi Carol ! Not much activity here. Much more activity on the thread about your weather ! Have a safe and happy new year !

Lynda
12-31-2014, 07:23 AM   #20
Spooky1
Forum Monitor
 
Join Date: Sep 2011
Location: South Northants, United Kingdom

My Support Groups:
A happier new year to all suffering with mental health issues.
02-25-2015, 03:28 PM   #21
Elektrikhd
Senior Member
 
Join Date: Nov 2012
Location: Washington, New Jersey

My Support Groups:
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.
02-26-2015, 04:43 AM   #22
Spooky1
Forum Monitor
 
Join Date: Sep 2011
Location: South Northants, United Kingdom

My Support Groups:
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.
03-02-2015, 09:27 PM   #23
Elektrikhd
Senior Member
 
Join Date: Nov 2012
Location: Washington, New Jersey

My Support Groups:
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.
04-08-2015, 10:48 PM   #24
Ann Morgan
Senior Member
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.
04-10-2015, 08:30 PM   #25
Elektrikhd
Senior Member
 
Join Date: Nov 2012
Location: Washington, New Jersey

My Support Groups:
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.
05-21-2015, 10:34 PM   #26
Ann Morgan
Senior Member
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. :-)
07-01-2015, 11:55 AM   #27
Z Mac
 
Z Mac's Avatar
 
Join Date: Jun 2015
Location: Long Island, New York

My Support Groups:
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...
07-01-2015, 12:39 PM   #28
Spooky1
Forum Monitor
 
Join Date: Sep 2011
Location: South Northants, United Kingdom

My Support Groups:
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.
07-01-2015, 09:40 PM   #29
Elektrikhd
Senior Member
 
Join Date: Nov 2012
Location: Washington, New Jersey

My Support Groups:
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.
07-02-2015, 08:05 AM   #30
Spooky1
Forum Monitor
 
Join Date: Sep 2011
Location: South Northants, United Kingdom

My Support Groups:
I've not heard of these myself. Maybe I shall have a look, thanks.
Reply

Crohn's Disease Forum » Support Forum » IBD and Mental Health Support Group
Thread Tools


All times are GMT -5. The time now is 09:42 AM.
Copyright 2006-2017 Crohnsforum.com