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12-14-2011, 09:00 AM   #1
suschex
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Feeling so sad...

I'm just feeling so sad today. I saw a few old pics from a year ago before all of this Crohn's stuff became a dx'd part of my life. In one I had just finished up a 26.2 mile training run for an upcoming marathon which I never got to run...it wasn't going to be my first but still it was what I loved doing. Yes, I know....I will run again, I will lose the pred weight, moon face, acne, my hair will one day grow back in long again, I will have energy to be myself, I will not have to say to my kids "Mommy doesn't feel well" every day, I will live through this and see it to the other side and have the full life I want....it's just that today, I am not there and just feel sad....I am sure it is on par with being a couple of months into this, failing on pred. and waiting to see if the next med will help....

Just feeling sad......it will pass
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Suzanne
Crohn's Disease - October 10, 2011

Current Meds
Prednisone
Entyvio

Past Meds
Humira
Lialda
6-MP
Remicade
Etc.......
12-14-2011, 09:15 AM   #2
chrisnsteph1022
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It will get better!
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Stephanie
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
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12-14-2011, 09:17 AM   #3
PsychoJane
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We have these days...
I hope it does not linger, I hope you get to feel better and fully enjoy your life soon too!
Humira will probably kick in soon! and I hope you will get to feel healthy again quickly!
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Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
12-14-2011, 09:45 AM   #4
suschex
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Thank you both so much! And thank you so much for not telling me to be happy b/c others have it worse than I do...not sure why those in my life keep trying to tell me to be happy when feeling sad is just part of the acceptance...for now

I hope one day I can return the support!
12-14-2011, 09:54 AM   #5
KWalker
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Hang in there! You have every right to have sad days but when it comes down to it, You're a great person and your kids are very lucky to have such a dedicated mom like yourself. You WILL lose the pred weight, and you WILL run again. Things will get better, they always do
12-14-2011, 10:04 AM   #6
sawdust
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Keep your chin up! Maybe instead of things taken from you, maybe those pictures become your goals. I'm not real good at turning things around into positives, but this was my immediate thought reading your post. The pred weight and other symptoms, energy, etc, are temporary.
12-14-2011, 12:16 PM   #7
tamesis
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I'm sorry you're having a rough day, and I hope things get better soon.
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Currently awaiting an answer to my multitude of symptoms.....
12-14-2011, 06:50 PM   #8
suschex
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Thanks all for the kind words and support...it helps so much to have y'all to turn to when I just need understanding!
12-14-2011, 06:56 PM   #9
tiloah
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Thank you both so much! And thank you so much for not telling me to be happy b/c others have it worse than I do...not sure why those in my life keep trying to tell me to be happy when feeling sad is just part of the acceptance...for now

I hope one day I can return the support!
Telling people "you should be happy" is NEVER helpful. And anyone who says that clearly doesn't have a grasp on the mental effects of disease, among other things.

I'm sorry you are feeling so down lately. I hope things look up for you real soon. Sending lots of positive and healing energy and thoughts your direction.
12-15-2011, 04:39 PM   #10
Spooky1
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Its so okay to confess how down you are. I have found it a great relief that this thread exists as i understand exactly how you feel. What thoughts we have all day isn't really the same as the thoughts others have about us all day. your children will still love you, i actually feel guilty for telling my cats i don't feel well and can't stand my tummy prodded or padded by their loving ways. i can't always give them the attention they need, and i certainly am unable to give myself any attention for self entertainment when mentally and physically so weak.

i'm having the year from hell at the moment. desperately trying to see my way forward when i have thoughts that i just don't want a future. so, like others say, just one day at a time, cry again tomorrow if its as bad as today, but someone might show some understanding (like this forum) and at least you feel human with issues, rather than existing a meaningless existence with issues.

i'm thinking of all you suffering. thank god for this website.

love the festive dog! trying to get festive myself.
12-15-2011, 07:46 PM   #11
suschex
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Spooky1 - Please don't say that you don't want a future...if you are feeling that way please make sure to let your doctor know you are having those feelings. I do understand the feelings though...I don't want my future to be anything like my present...we all just have to keep hope and believe that somehow, someway the future will be better for us...and until then keep sharing our hardest feelings here where there is love, support and understanding.

I am so sorry you are having the year from hell...hang in there...sending you tons of hugs!!!
12-15-2011, 08:02 PM   #12
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I was never mentally tough enough to run cross country let alone a marathon. I could do a mile but that's about it. You must be awfully tough to even start training for it or thinking about it. I can play lots of hard contact sports but the long distance runner has something special.

I'd like to hear when you are well enough to run!
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DX Crohn's 1971
Crohn's Surgeries 1971, 1974, 1984x2, 1993, 2007,2016
11 Kidney Stones from 1996 due to resections
All the standard drugs/advice from the 70's 80's 90s
Now: Lyrica & Cymbalta (Neuropathy)
Fish Oil, B12 injection monthly
Dec 21 2011 started Remicade
February 2012 off of Pentase!
Nov 2014 Back on Imuran
Jan 2015 off Remicade
Mar 2015 on Humira
June 2016 on cimzia
Dx short Bowel July 2017
12-15-2011, 08:02 PM   #13
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I can relate to the above. I've felt that way at times too. I might start on some antidepressants for it soon, not sure. Still kind of hesitant. Where you're at on your meds right now is really tough! The last 10mg of pred is terrible! I hope the Humira is helping you. I know Humira helped me a lot! Still is. I think I had to taper 5 mg all the way down. Ugh!
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Married to an amazing man and have 2 daughters (one before and one after Crohn's diagnosis).
12-15-2011, 09:10 PM   #14
suschex
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Roxymusic - I'm not the fastest but I really do find such happiness in the marathon distance! Not sure that I'm so tough but very sure I am stubborn as hell...lol. Guess that might just pay off in this situation as well.

Stupidbody - I am down to 5mg of pred as of today. Never thought I would say this but I wish I could be back on 20. I feel so much worse now, not the taper side effects but the ill from CD. Humira has done nothing for me so far. How long did it take for you to feel the help from Humira?
12-15-2011, 10:21 PM   #15
kossy
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I get down a lot myself. It last for a while. But then something inside of me snaps so to speak. My sadness turns into a positive anger and determination to carry on and breakdown barriers that this disease has placed in front of me. I hope you'll be able to do to the same. Wait, let me rephrase that. I know you Will be able to do the same!
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Crohn's since the early 80's
Ostomy since 2001
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12-16-2011, 07:38 AM   #16
Spooky1
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i got to the stage whereby i marked my day out of ten. actually although i get desperate with no one around but my thoughts i have come to recognise i get to the 0's out of ten for stress and distress. i agree with Kossy. phases do happen its just getting through them with my own health, the death of relatives and those relatives with cancer. this phase is bashing me hard.

its sunny today and i instantly recognised it and feel better than yesterday. sometimes thats all it takes for the slight uplift that changes the mood slightly. the joke thread on here is funny too. I am so grateful i found this forum.
12-16-2011, 09:21 AM   #17
suschex
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Kossy - thanks for sharing how you turn it around...great advice!

Spooky1 - It dawned on me that the sun hadn't been out here either and that has such an impact on my mood so I dug out my Seasonal Affect Disorder lamp. I bought it years ago when we lived in Alaska and the used it a ton in Seattle as well as in Michigan but have had it put away since moving back to Texas. Have you considered one...it has always made my dreariest days feel so happy!

I hope everyone is having a more hopeful day today...y'all are the most amazing group of people I know...this disease might just be unbearable without y'all and this forum!
12-16-2011, 09:41 AM   #18
Spooky1
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i will dig mine out too. i tend to forget i've got it
12-19-2011, 12:32 PM   #19
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I noticed a difference on Humira the first week. It made a huge difference for me - worked better than prednisone. It sounds like it isn't working for you though. Have you talked to your dr about it yet? Maybe try a different med or add another one? It's hard to get off pred if you don't have something else working for you!!

Has Zoloft helped you much? My gp wants me to try it and I've been a little hesitant. Wondering if I should ask my gi about it first. I've definitely noticed how lethargic I feel on the dreary days.
12-19-2011, 03:28 PM   #20
suschex
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It's not working yet...my GI said it will likely take the full 12 weeks since the pred didn't work and my CD is sever and in an advanced state...not sure if that is right or not...starting to doubt myself, what I am feeling and how I should feel. He is going to do another colonoscopy in Feb. 14th to see if the CD is still active...if it is then we will add meds or switch meds.

I am on my last 3 days of pred...just 5mg a day until Thurs and then done. I miss the energy but not the other side effects at all!

Zoloft does help. It is just a little help with anxiety/depression. It is one of the old tried-and-true SSRIs so it is a really safe one. I took it almost 20 years ago when I was struggling through some stuff and it helped a ton then and was very easy to taper off of without any negative effects so. What is it that makes you hesitant?

I'm glad the Humira helped you so much and so fast!
12-19-2011, 06:10 PM   #21
stupidbody!
 
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Woohoo! Nothing like a colonoscopy to say Happy Valentine's Day! I think I started feeling better about 2 weeks after my last dose of prednisone. You're in the worst part of tapering for sure. With Humira I actually had a little more energy the next day (which was my daughter's first birthday). It was nice to feel well enough to take care of her and make it a special day. I hope it starts helping you soon.

I think I was hesitant about zoloft when I saw that it needed to be tapered. I immediately think prednisone and am afraid tapering will make me an emotional train-wreck or who knows what else. Reading through the different things it's used for sounded like a really good fit though.
12-20-2011, 03:02 PM   #22
hawkeye
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Hang in there Suzanne, when I was diagnosed (back in 1990) it took a few months to get things under control, but I eventually went into remission - and that was before the fancy wonder drugs like Humira and Remicade.
12-21-2011, 09:35 AM   #23
suschex
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StupidBoday - It's funny becasue when they almost dx'd me back in 2002 I had my first colonoscopy as an emergency on Memorial Day and then my second one on the 4th of July. This time around (when they finally dx'd Crohn's) my colonoscopy was again an emergency and it was on Columbu's Day and now the next one is going to be on Valentine's Day. Guess my colon has a thing for holidays!
- I just took my last dose of Pred so with any luck I will start to feel batter. Also, I took my 7th Humira injection last night and am really hoping it helps now!
- I'm so happy you had the extra energy for your daughter's 1st birthday...those are such special times and you deserve to have a little extra to enjoy that with her!
- I have been on and off Zoloft a couple of times and have never ever had any issues other than having to take it in the mornings otherwise I had trouble sleeping at night. It is a very personal decision though so go with what feels right for you and always remember you can always change your mind if you don't like the way it works for you.

Hawkeye - Thanks for the encouraging words. I so want to be in remission but am not very hopeful due to the length of time I went un-dx'd my entire colon is sever with advanced disease...thinking we will eventually just take the thing out...which is fine with me...then there would be no porta-potty lines to hassel with at the marathons :-) See, I do see positive in this one way or another...I am just not a very patient person, just want to get it taken care of and move along!
12-21-2011, 05:18 PM   #24
stupidbody!
 
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That is interesting with the holidays! Yay- no more prednisone! I was pretty severe too. My colon looked like raw meat, bleeding etc. Yuck! I've been afraid of having my colon removed someday. Reading through this site most people who've had it done seemed relieved though. I was about ready to rip it out myself last year when I'd been really sick and misdiagnosed for 6 months. I'm starting to be surprised at how resilient our bodies can be. Scarred, but resilient.
12-21-2011, 06:57 PM   #25
hawkeye
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then there would be no porta-potty lines to hassel with at the marathons :-) See, I do see positive in this one way or another
Before I started running I was amazed when I went with my wife to her races (half and full marathons) and saw the rows of porta potties.
01-02-2012, 10:32 AM   #26
suschex
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Before I started running I was amazed when I went with my wife to her races (half and full marathons) and saw the rows of porta potties.
It is insane to see the lines for the porta potties...and to laugh that we are all so thankful something so nasty is right there for us to use. Luckily, I have never been fast enough for the minutes I lost in line to really matter but always felt bad for those who were fast enough to have to worry about lost time in line..Then again, I suppose they had all past those lines long before I got there...so in the end it is all good
01-02-2012, 02:58 PM   #27
tlc-x
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It's normal and fine to get sad. Of course it is. You've been told you have a life long illness that is completely rubbish and make you feel rubbish. You're probably spending most of your time staying strong for yourself and family, so it's normal to have a down day. You'll feel a bit more cheerful soon. You're so brave xx

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~ Tasha.
~ Seventeen years old.
~ South of England
~ All my cousins, aunts, uncles and grandparents have either CD or UC
~ Fifth year of not living my life properly due to the symptoms
~ Endoscopy, colonscopies, MRI scans, ultrasound scans, blood tests, biopsies, urine tests and so on!
~ Been on so many different medications and nothing actually helps
~ Latest diagnosis is 'Functional Dyspepsia'

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