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08-12-2011, 10:16 PM   #1
Jessica
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Coming to Terms

OK... so I just wrote out this long story and somehow lost it on this stupid tablet.

Just wanted to know how people came to terms with their disease(s), if they were dealing with depression.

Thanks.
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Dx w/ Crohn's Disease May '08
Dx w/ Graves' Disease June '11
Dx w/ Lymphocytic Colitis October '12
08-12-2011, 11:30 PM   #2
toml99
 
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Good question. I was given a preliminary diagnosis of CD following a colonoscopy, but it didn't really bother me that much. Several weeks later I had a CT scan of my small intestine, and when I went to see my GI for a follow-up he gave me the official bad news. I was really shook up, even though I knew it was coming. I had several crummy days while I sorted all of this out, and then I started focusing on how I could control my CD, rather than the other way around. And I also began to realize there was a positive side to finally knowing why I have had such strange GI problems for the last 3 years or so. Now a lot of things make sense, and I can anticipate them and sometimes even lessen future problems. I was like a hockey goalie for a long time, just trying to stop pucks that were being shot at me, without knowing what was happening.

One interesting thought on why I was upset even though I knew what was coming was in the book by Jill Sklar, The First Year: Crohn's Disease and Ulcerative Colitis. She says we get upset because no matter how well we're prepared, we've just been told we have an incurable disease. That makes some sense to me.
08-13-2011, 12:53 AM   #3
AndiGirl
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Hi Jessica! I have battled with depression off and on before I was diagnosed with Crohn's. It's difficult for me to say whether the depression came on because of all the abdominal/intestinal pains, or if it's a whole other issue. From my understanding, depression is very common in Crohn's patients along with other patients have have some sort of chronic pain or illness. Add Prednisone to the picture, and that's really a recipe for mood swings.

I have been diagnosed with CD for six years now. I still have my ups and downs mentally and emotionally. There are times when I can work hard and take the flare-ups and pains as they come. There are also those times when I feel defeated. I go through a funk. I'd have to say that I understand and have accepted that I have CD. I have learned a lot about the disease, but I may be learning to cope with it throughout my life.
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Diagnosed with Crohn's Disease in 2005

Pentasa 2x500mg (4 times a day)
Zofran (as needed for nausea)
Ginger Capsules (for Nausea)
Multivitamin
Zoloft 150 mg
Ranitidine 150 mg (2 times a day)
Entocort 3 mg (3 capsules by mouth for 8 weeks, then tapering to 2 capsules for three months)
08-13-2011, 03:48 AM   #4
netsy
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Jessica,
I was disgnosed only a month ago so am a newbie too. Although I'd been having trips to the loo up to 12 times a day for over 6 months and I knew something wasn't right, when I was finally diagnosed I felt erm numb.. How are we supposed to feel..relieved? Scared? A mixture of everything I suppose for me personally. I visited my doctor and he explained everything clearly, I think I was sort of relieved that I knew a bit more. The daunting fact that I have to take meds every day for the rest of my life? Then I sat with my partner (who is fantastic btw) and we came to the conclusion that at least I would have a life. Perhaps the big man upstairs has given me this because he wants me to slow down a bit? Knows I'm strong enough to cope with it? These things are sent to try us just to see if we can cope. The mood swings on prednisolone are unnoticeable to me but everyone around me knows.lol. Take each day as it comes, be positive (1st thing my doctor told me), keep a food diary (thats really helped me so far) and take advice, support and help from your family.. When you need to rest then please do exactly that. Wish you all the best, chin up and keep smiling x
08-13-2011, 06:58 AM   #5
Jessica
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@Tom - I had been having pain for a few years prior. Not constant, but really sporatic and with horrible timing. I was told it was PID (some female disease). And I accepted the bm issues because I went to a lot of parties (someone once told me they were the "liquor shits", so I began to ignor it). The problems weren't ignored when I moved home after my BS degree, and my mother insisted I had a problem and needed a doctor. This was maybe a year after I had been home.

So really I had accepted it was how I was, not because I had a disease. It wasn't a light at the end of the tunnel, like it is for some many people. I had accepted me without the disease. Now, I have two, and can't seem to still accept the first, let alone the second.
08-13-2011, 07:03 AM   #6
Jessica
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@Andi - I've had issues with depression my whole life. A blackout once (sober) , crying under stairwells, a range of self destructive things, etc. Just depended on my stage of life, I guess. Now, my depression is a little more morbid, mixed with anger. Its not because of my disease, but amplifyed by it. I can handle it, and always have. It just bugs me more now that I have to deal with it. I know I'll always have the ups and downs of life, I just have that more downs have been added to the equation.
08-13-2011, 07:08 AM   #7
Jessica
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@netsy - I too have a wonderful boyfriend, a supportive yet mostly assholeish family. I take advice, and keep moving forward. Sometimes I feel like I keep my depression from them, but usually I let them know I'm having an off mood. This way they know to adjust and be a little nice around me. Lol. Sometimes I don't know how to feel, but sometimes always fall back on being depressed more than anything. I think I'm state strong enough to cope. After this second diagnosis though... its just like throw another one on top. Sure, I'll be fine. I don't believe in a big man upstairs, but if I did I have a feeling I'd be more supset with him than thinking he was supportive or knew me better.
08-13-2011, 02:57 PM   #8
kllyeve
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I have dealt with depression many times in my life- since age of 20. I think I am more angry and pissed off about this diagnosis. Although it does make me feel better that there was a real reason for my exhaustion and lack of stamina that I dealt with all those years and I am not just lazy or unmotivated.

I was already diagnosed with hypothyroidism years ago - so I've gotten over the "have to take daily medicine for the rest of my life" blues. I do find it depressing that I now take more pills than my 71 year old mother!!!

I have had so much happen in my life since this diagnosis - other medical issue snad family issues that I am not sure I have dealt with this one completely.
08-13-2011, 11:09 PM   #9
AndiGirl
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Jessica, I can't give you any new advice. I'm sure you've heard it all: counseling, exercise, medication, etc. My advice is to be kind to yourself. I've always been considered a stable sort. Well, what most people, besides those who are VERY close to me, don't see is the roller coaster of emotions and chronic battle with depression. I'm in a funk now. It's the beginning of the school year for me, and I'm anything but excited. Sometimes it takes a lot out of me to put on a happy face and go about my usual routines. I hate feeling this way! Please know that there are some of us here, that can relate and will understand if you need to vent.
08-13-2011, 11:59 PM   #10
outlier
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I think my depression and Crohn's are strongly linked. Right before I got sick i got one of the worst episode I have ever had. I had become malnourished and think that is what sent me into an episode. I now wonder if past episodes have be linked to stomach issues that I was unaware of. Though one of my friends pointed out if she were in my shoes she'd be depressed too.
I don't know if come to terms is truly what i'd say. I've accepted it because it helps life makes sense. I know any little health thing truly terrifies me still as well as health insurance fears. but i think that's ok. i was dx just a year and half ago. I don't know what this illness has in store for me. I have fully accepted the fact that now that i have a Dx (not just Crohn's but AS) the worst part is done.

Take a breathe and remember this is a big deal, fear/depression/anxiety is natural. though try not to let the dx rule your life no matter how much it tries.
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Diagnosed: Crohn's Oct '09
Extraintestinal: scleritis May '08, GERD Aug '09, ankylosing spondylitis Feb '10
Current Meds: Humira, Asacol, Dexilant, domperidone, Tramadol and a whole lot of vitamins
No more sulfasalazine, Methotrexate, Xibrom, Pred Forte and Iron
08-14-2011, 07:55 AM   #11
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Like some others, I was diagnosed with depression before having problems with Crohns. As far as dealing with the depression in relation to the Crohns, it depends how bad the symptoms are at any given time.

Most of my suicide attempts have been because of depression, though I've rarely self-harmed because of it.
08-16-2011, 11:44 PM   #12
AndiGirl
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If anything, I think depression accompanying Crohn's is down played and not even taken into consideration by some medical providers. It's a constant battle.
08-17-2011, 06:58 AM   #13
Jessica
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My GI hasn't ever brought it up.
08-17-2011, 07:13 AM   #14
art_nj
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Personally speaking, I've always been an upbeat personality type. However when I go into a flare, I get depressed. When I'm not in a flare, I'm fine. I've come to a point (and my husband has too) that I understand that I'm in a flare and I'm going to be depressed. Actually, I don't know if I get depressed as much as I become very moody. Everything seems to bother me, even the way people chew. It all revolves around how much physical pain I'm in. If I'm in a lot of pain, I have very little patience or tolerance for anything. When I'm done with a flare, I'm a completely different person. Sort of a Jekyll and Hyde personality. I think many of us have different experiences with this disease and it's effects on us physically and mentally.
08-17-2011, 07:20 AM   #15
Jessica
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Crohn's definitely changed my outlook on life, and changed how I deal with things emotionally. Yes, in remission I'm generally a happier person than when I'm in a flare. Still not quite as carfree and happy as I used to be. That I can understand though. But the bad mood and depression build on each other. If I'm arguing with someone and I'm upset, my stomach will turn and I might have to run... which is upsetting too because I want to finish making my point, or I don't want to show how much it's effecting me. Oye. Guess my mood takes after my Crohn's now. Flares are like depression, and harder to get into remission from it.
08-25-2011, 07:03 PM   #16
ChaseMcCord
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My buddy has had Crohn's disease for quite some time now, brought on by his use of Accutane. He has since graduated college with a pilot's license (which he can't use), hasn't been able to meet anyone special because of this debilitating condition, and is now having severe panic attacks. His depression has worsened and I feel that my support is not enough for him anymore. He is in the Indianapolis area, I was wondering if there were any support groups available. Also, if someone, as a Crohn's patient, could provide some ideas as to what keeps you busy, what kind of jobs permit the flexibility of persistent bathroom breaks, and how you have learned to cope with this disease. Thanks for your time everyone!
08-26-2011, 04:57 AM   #17
Jessica
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I'm able to work a desk job. So long as my performance is good, I can take off days, and make them up later. I can go to the movies OK, so long as its a good day. No stress on my body means I can sit and enjoy. Walking the malls help too. The major department stores have bathrooms, even if I'm far from the main one in the food court. Oh, and my boyfriend and I enjoy minigolf. Even if we're out of town, it's something we can always find.
08-26-2011, 06:05 AM   #18
Gwen pippy
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I haven't been dx with depression but boy do I suffer with it at times, I have brought it up at GP and GI visits only to get the raised eyebrow as they turn back to their desks and change the subject. I agree with a lot of you here, mine is directly related to being in a flare and the level of severity, I too get very irritated even by the noise of someone chewing and don't even notice it when I'm in remission. I have bouts of anxiety and panic attacks and my poor hubby had to pull me out by the ankles from under the table the last time I had one.
I would love to know is it related to a particular level of hormone or something in our system and is it that when its low/high we are more inclined to flare or is it because we are flaring that it goes out of balance.
Sadly I too keep me inner most feelings to myself, even though I have supportive hubby/ family just don't think they would get it or maybe I just don't want to admit that theres more going on, as I read in another post we crohnies do have a bad habit of denying we are ill even to ourselves, so it's understandable we don't speak of our mental health.

As for dealing with a flare, I have learned not to blame myself, try not to feel guilt over work, home and accept help with childcare, I find sometimes just sitting doing a puzzle (something that doesn't demand concentration as its the first to go for me) really helps take my mind off the fact I'm ill.
Desk job was the best I worked, was a company trainer also and that was fun but pulled some strange poses/faces will teaching over the years but loved it that much I seemed to manage even in a flare.
09-06-2011, 08:56 PM   #19
HalfHeartedHeroine
 
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I had never heard of Crohn's Disease until after I underwent surgery, and I still don't think I've come to terms with it.

I get moodier when I feel ill, and although it sounds bad, I can be intensely jealous of others around me who don't have CD. I try not to think that way, but it's hard. It's a long process, I guess
09-07-2011, 09:26 AM   #20
rabbitrage
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Hey- I've got depression and Crohn's. Makes for a wonderful mix... Ha.

My depression came first, and when I got diagnosed with Crohn's, I struggled for a long time with the fact I felt really alienated from my own body. I guess I still do in a lot of ways.

Hope things are going well for you.
09-07-2011, 10:16 AM   #21
chrisnsteph1022
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I went into a deep depression after my dx. Between the steroids and the depression, I gained 100 pounds in under a year (I'm an emotional eater). Being so fat made the depression worse. It's a viscious cycle. I finally got to a happy place (with the help of meds and a year of therapy) and lost all the weight (well, all but these last stubborn 10 pounds). However, being in a flare, I still get a little down sometimes. I'm bipolar, so it can come on without warning, but I find being sick triggers the depression. It's just something I've accepted and live with. I will be on meds for both the Crohn's and the bipolar for life.
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Moderate/severe flare through entire colon 12/2010-10/2012
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09-08-2011, 08:09 AM   #22
SarahAnne
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My mom had immune issues and depression, and I think I've suffered with both since middle school. I'm sure the depression and anxiety go hand in hand with the Crohn's. I have noticed that I am more able to deal with it now as I'm older. I'm on Zoloft, and Ativan as needed which helps even things out (mostly because of the pred!). My husband is actually the one who helped the most. He is the exact opposite personality of me (laid-back, carefree, happy-go-lucky, a huge hearted hippie). Everyone loves him, he falls ass-backwards into amazing jobs and situations and skips through life happy as a lark. He tried to make me understand that he lives the way he wants to live. He puts out a positive attitude constantly and good things always happen to him. I believe in karma, but I can actually watch it happen with my husband. So even on my bad, bad days I try to remember reasons to be happy and thankful. And it got easier and easier to turn my mood around by myself.

So basically, surround yourself with happy things and happy people, and hopefully the happy will rub off onto you until you can hold on to it by yourself. Or at least stay on your meds!
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Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
09-08-2011, 08:18 AM   #23
darkmuse
 
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Hi there, Jessica!

I was first dx'd with Crohn's in 2003. I've been fighting it constantly off and on since then. I also deal with depression/anxiety which I take Wellbutrin 150 bid. I definitely deal with the dark side of depression more times than I care to admit, but I can't lie to myself or those closest to me. It's difficult dealing with not only the disease but the effects, medicines, tests and doctors visits. It helps to have a wonderful support system. I can honestly say I don't know where I'd be without my awesome hubby, mother, family and friends. We all have our good days and bad days, but sometimes not only do the good outnumber the bad, but they really drag our emotional well-being through the mud as well.

One thing I can say...between work (I'm a patient care tech at a local hospital), taking care of the kids and myself....some days I don't wanna get out of bed much less eat or do anything.

Please don't feel like you're alone dealing with this! I felt like that for so long and I regret that it took me so long to discover that I wasn't. If you ever need to talk, rant or cry...feel free to give me a yell!

I wish you well and take care, Jessica!
09-08-2011, 01:36 PM   #24
Jessica
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Thank you, everyone, for your comments. I'm doing much better, as far as the depression goes. Things in my life are changing (ending and starting), so I'm able to be optimistic about my future. Remission is still treating me well, and my Grave's is getting back under control. Couldn't ask for much more in the health department.

No matter how happy I am in life, I don't think I'll ever be "okay" with having Crohn's. I don't think I'll really be able to accept it. Truth be told, it's there. But I don't have to be happy about it. I won't embrace it. Live my life around it, yes. But living my life regardless.

09-23-2011, 06:47 AM   #25
ekay03
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I have had CD for over 20 years and when I wake up w/ belly pain, it don't hurt any less today then it did 20 years ago. In a way I dont think you can completely come to terms w/ something that is always changing. What has changed is the way I deal w/ it. Most important I think is having a good and compassionate doctor. I can't stress that enough a good support system is important too. so to sum it up. Good doctors and good support is essential.
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Crohns dx 1992
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150mg Azathioprine maintenance dose
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09-23-2011, 07:18 AM   #26
scottmyster
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HI Jessica, I have had crohn's for 21 years now and was diagnosised with Bipolar disorder(manic depression) Like you said you haven't got to like it but, you have to come to terms with it. It's a life long illness and you'll have good days along with bad days but, eventually you will become more knowledgeable about the disease and you will be able to deal with it better as the years go by. all you have to do it watch your diet and keep taking your medications if your on them. i Know all about depression and it can be debilitating at times and that only makes matters worse so try to relax and lead a less stressful life and you will do fine. best wishes.
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“The greatest gift that you can give yourself is a little bit of your own attention.” Anthony J. D' Angelo____________________

Dx Crohns 1990
Present medication
Asacol 2400mg and prednisone and buscopan and demerol for pain
Supplements
Omega -3 fish oils
Probotic supplements
B100complex vitamin

09-26-2011, 06:47 PM   #27
RFarmer
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I've dealt with depression before (though I'm only 18, so I can't really say for a long time haha), but my diagnosis didn't really upset me that much. It was kind of a step forward for me, to getting healthier. I remember the thing I WAS concerned about was seeing a colorectal surgeon for an abscess. Which was terrifying, because prior to her, I had a terrible experience with a nasty general surgeon.
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