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Crohn's Disease Forum » Support Forum » Mental Health Support » Can't handle being me today


03-28-2014, 04:38 PM   #1
afidz
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Can't handle being me today

The title says it all I think.
I am so stressed out about my health. About school. About money. About the cleanliness of my house. Everything.
I just want to lay in bed and hide. I can't do it anymore. I feel like my friends and family don't really realize how sick I am, and they expect me to lead a normal life. The energy it takes me just to simply put my make-up on is ridiculous. I usually have to go lay down for a few minutes after because it hurts my back and ribs. I just don't know how to deal anymore. My life has become so complicated, its not right.
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
03-28-2014, 05:34 PM   #2
Clash
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I'm so sorry you are struggling, afidz. I justed wanted to send hugs!
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-28-2014, 06:16 PM   #3
Dragonfly72
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I am sorry too, you are not alone in the way you feel! I have very similar feelings! Sending hugs and major support your way❤❤❤❤❤❤❤

Xo
Michele
03-29-2014, 04:20 AM   #4
Cross-stitch gal
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Oh afidz. Just wanting to send many hugs your way in hopes things will start turning around soon.
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Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

Non-Meds:
600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


UP Support Group http://www.crohnsforum.com/showthread.php?t=68350
03-29-2014, 05:17 AM   #5
bigtruck
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Sorry your feeling like this I am also in a dark hole at the moment, I can't seem to catch a break and wonder is there any point or future I hate my life and wish someone could explain why I have had to have so much suffering in it such a miserable excistence.
03-29-2014, 07:31 AM   #6
scottsma
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I feel really sad for all of you who feel this way.I've only ever had mild depression,luckily,so I don't feel in a position to give advice.I hope you all have at least one good thing to focus on for today,and maybe there'll be another tomorrow.Best wishes.
03-29-2014, 12:03 PM   #7
copeland
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Sorry adfiz. I feel exactly the same way today. I woke up and could hardly walk to the bathroom cause of the arthritis, and now I haven't left home all day. I tried to clean the house a little, but ended up back in bed pretty soon.

I would love to not be me at the moment.
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27 years old, Crohn's since I was 16 or 17.
03-29-2014, 12:59 PM   #8
happy
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afidz,
You need some constant support from somewhere. You are dealing with some very difficult problems and you need some external support if you cannot get some from family and friends.

You may have to really look outside the box for what you need. Does the office/hospital/clinic/organization that you attend offer any psychological support services? How about the municipality that you live in? I can't remember if you are working now--I can't imagine how you could be. However, if you are--does that organization offer anything? If you have a religious affiliation--see what they can offer. Ask anyone that you trust to help you find some support.

Find anyway to pay for it that you can, even if it is a charity that supports you. Is there a local distress telephone service that you can call?

I remember the day that I finally had to give up everything else in my life and admit that I was as ill (physically and psychologically) as I was and seek help. It was hard to let go of everything else, but it was the beginning of me regaining my health. It is too hard to do by yourself when you have been ill so long.

I do not know what your options are in the US, but you can PM me if you want someone to problem solve with.

Good luck.
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Enteral Nutrition induced remission in August 2011
Maintaining remission on Full Elimination Diet
03-29-2014, 01:09 PM   #9
Jennifer
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I hear you afidz. I know you're going through a lot and have been for, man I forget how many years now but it's quite ridiculous. You've stuck it out this long and I know you'll continue to do so until you're finally well again. Sorry you have to go through these emotions of feeling so down though. I wish I could help more. You live to far away to hang out. Some day maybe.

I had a rough day yesterday also but am still going just like you. I picked a bad time to start a new hobby because my back was killing me trying to separate the adult bettas from my new fry. Even my other leg started going numb. Super fun.

I'm here for you anytime you want to talk. Except for today cause I have to deal with my grandpa being released from the hospital after his fall and got a broken arm. I'll let you know later how that went. After that though we can skype or something.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-29-2014, 04:39 PM   #10
afidz
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Some days I'm fine and I can handle anything, and then some days its just to much for me to handle. Some day this will all be behind me and I will be able to move on with my life. Just need to figure out better coping mechanisms until then I guess. Yesterday I saw someone walking down the street. Laughing and talking and having a good time. That set me off though. Something so simple. I couldn't help but fantasize what it feels like to have functioning abdominal muscles that hold a digestive tract in place. To have core strength to be able to walk and talk at the same time. To be able to walk to the kitchen from my bedroom with out running out of breath or crying in agony from the pressure it puts on my back. It seems like such a silly fantasy when you think about it, but there is nothing that I want more right now. And that's what I'm not able to coup with. Even if the surgery goes well and I actually heal the correct way this time, my body is never going to be the same. I'm always going to be weak and lack core strength. It's not fair. All I did was trust a doctor to do a colonoscopy during a bad flare. I want to go back in time to that day and RUN. Had that day never happened, my life would be normal all but having Crohn's and arthritis. That's what is so fucked up about my situation and that's what brings me down. " if only I hadn't..."

Lol on a lighter note I'm now singing " if I could turn back time, I would find a way" ... You know the rest
03-29-2014, 06:13 PM   #11
jlm
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I feel you. I'm having the "I'm a burden" moment. Friends and family are here helping us move and I can lift a finger. I'm lucky to have the friends and family I do. I really hope something good happens for you. IIt's all we need sometimes, just a small glimmer of good things.
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03-29-2014, 06:56 PM   #12
Farmwife
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Cyber hugs is all I can offer afidz.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
03-29-2014, 07:32 PM   #13
Allison M
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Wishing you to feel better, afidz.
03-29-2014, 08:10 PM   #14
Catherine
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Thinking of you.

Have you actually told your family how bad your doing right now?

We as parents of someone crohn's try to understand but we never fully will.

When you sick we try and encourage you to get out of bed when all you want to do is sleep.

When your well, are doing to much, are you getting enough sleep. Are you pushing yourself too hard.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
03-30-2014, 08:05 PM   #15
afidz
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I live a thousand miles from most of my family. The ones that are close by, they are beginning to have a sense about how bad things are right now, but I still keep a lot from them.
I do get out of the house. I try to have as normal of a day as I can. But its the days that I can't do "normal" that everyone starts riding my case...about something they know nothing about.
My dad has Crohn's, so to an extent, he understands. But he has been in remission since he was 11 , so there is a lot he doesn't remember. But even if he remembered more, nothing compares to what I have been through. I don't know of a single person that struggles with what I do. Its more than Crohn's. Its what Crohn's has done to my body. What my ex-doctor did to my body. I guess I don't really talk too much about what has actually happened to me in detail in the public forum for several different reasons, but it is a very unique, grotesque, awful thing that is hard to explain without taking pictures of my abdomen and video recording it when it moves (lol, ok I made myself laugh there, but really, it moves like it has a mind of its own. I joke and say aliens planted their eggs in me)
Thank you all for your continuing support, it means a lot for me
03-30-2014, 09:40 PM   #16
happy
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Hi afidz,
You have such courage in being willing to share with us what you are able about your health journey.

We will continue to listen, whenever you are able to 'talk'.
03-31-2014, 01:54 AM   #17
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Sorry you are having a bad day and feeling blue. I have been there many times (minus putting on makeup).

When this passes, as bad times always do, perhaps considering a different approach to crohns may be of some assistance.

First, not only have I walked in your shoes many times but when you feel like "please shoot me as death seems like a compelling option right now"........that just is not a good place to be at. Many of us have been there. When pain takes over it is tough. When there is no energy to stand up for more than 5 minutes its just misery.......When no one really understands why one wants to lay in bed for 18 hours, maybe take a shower then go back to bed.......regular folks can never really comprehend what one goes through both physically and mentally.

Below is what I did to improve things. I still have pain from arthritis but it is far better than it use to be.

Here is the plan in not specific order:......Started using LDN (Low Dose Naltrexone) in Sept 2013.......stomach pains stopped along with no more urgent bathroom moments.
Increased all vitamins specifically D, B and Iron.
Bought an inversion table to help my back slowly become pain free.
Been eating gluten free out of necessity....never cheated either
Started juicing........drinking liquid veggies and fruits
Started using medical marijuana in Dec 2013........it has helped the stress and increased my desire to eat more....you can cook with marijuana too and it is an under-rated medical consideration with NO side effects

That is my 2 cents......I hope this helps!
Be good!
03-31-2014, 04:53 PM   #18
afidz
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Kijkenny Thanks for your input, tips on how outgrew people manage their disease is always useful.
When I said thati don't know anyone who had dealt with what I have, what Crohns had done to my body is truly pretty unique. It's a very complicated story, if you would like to know what happened, we can talk in the chat room or via private message. But, I really do appreciate your advice!
04-03-2014, 10:49 PM   #19
happy
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How's it going?
04-05-2014, 10:53 AM   #20
HorseLover!!
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Sorry afidz hope you feel better soon, sending you hugs
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Had my first Colonoscopy and Endoscopy at age 2 1/2 years old

Diagnosed with Crohn's in 1998 when I turned 3

19 Years and counting with Crohn's!

Previous: Prednisolone and Pentasa slow release, Had tube feeding at age 3, Azathioprine

Currently in a flare but not taking any medication because doctor hasn't bothered to prescribe anything

My HORSE is not just a HORSE, he is my SANITY, my HAPPINESS, my THERAPIST and my BEST FRIEND


04-05-2014, 10:44 PM   #21
afidz
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Sorry for the late response, this week as been super busy
My mental health has been a lot better the last few days. I have had to help my sister at her work everyday this week and being able to get out of the house to "work" as really helped. Gave me a sense of normalcy.
No matter which way I think about my health, it upsets me. For now, I am just trying to loose weight and not look in the mirror too much. I have broken down a few times this week but my boyfriend has been there to hold my hand and comfort me.
There are going to be more bad days/weeks ahead. Its inevitable. my situation would be upsetting to anyone. But I am hoping that those bad days will be soon followed by a good day to balance out
04-06-2014, 02:05 AM   #22
Cross-stitch gal
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Glad to hear that you've had a chance to be busy. Sometimes having something to do is good. Always helps having someone there with you to share in the pain. Sending more hugs your way. Xxxx
04-17-2014, 03:01 AM   #23
afidz
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Thought I would update since I can't sleep
Nothing has changed health wise I guess. The hernia is still unbearable. I am pretty sure one of my organs is trying to flip over. I am gaining weight for no reason instead of losing it. I am about to get on my hands and knees and beg the surgeons to just move on with the surgery. can't live like this much longer.
My mental health state is up and down. A bit bipolar really. It doesn't take much for me to get upset and depressed. Just trying to stay busy and stay active.
I don't do well around people I don't know very well (or know at all). I get really bad anxiety because I feel like people are staring at me. I have to go to MD in a few weeks for a memorial service where there are going to be tons of people I don't know or don't know me INCLUDING my boyfriends ex. I know it shouldn't' matter what she thinks, but it does to me. I just want to look normal. I am sure that whole weekend in MD I am going to be a basket case.
Anyways, thats pretty much it, just thought I would update
04-17-2014, 03:24 AM   #24
Cross-stitch gal
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Wish I had some better comforting words to say. I'm so sorry to hear all that you have gone through and are going through right now afidz. I hope they can finally do something soon to get you comfortable and feeling more "normal." Would love to live closer to you to hug you for real. But, in the meantime am sending you a virtual hug from across the web.
04-17-2014, 03:52 AM   #25
theOcean
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I hope you'll be all right for the MD trip! I used to deal with terrible social anxiety, and still feel it a bit now whenever I deal with crowds or large gatherings. (My boyfriend has a huge family, which is terrifying at times.)

I also understand how you want to be able to present yourself well, even to someone who shouldn't matter. I'm sure you don't need any reminders, but when I'm feeling down I like to remind myself of all the things I've gone through and how I'm still here, and how not many people could do the things that I've done.

I don't know the details of your Crohn's, but get the sense even from this thread that you've been through a really rough time. So maybe that might mean something to you to think about, too.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-17-2014, 10:30 AM   #26
happy
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afidz, So glad you updated. So sorry you have to face a difficult weekend around other people. As we all know, our society places too much emphasis on our outward appearances. Despite how you feel about your appearance right now, perhaps you can take comfort that the people on the forum know that you are indeed a very beautiful person. In a social setting, I know that I would prefer to be chatting with you than someone who may look 'model' beautiful, but who may not very kind to others.
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