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I'm having trouble coping

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Ulcerative Colitis
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Posted 4/2/2014 2:25 PM (GMT 0)
I've tried posting this over the last 2 weeks, but couldn't.

I'm really struggling with depression and coping with this disease. I'm lonely, isolated and sick. The depression started about 6 weeks ago when I was coming out of a flare. I'd tell myself "you're not THAT bad" to be so depressed. "You're not going 30 times a day so stop crying!" Well now I am THAT bad and the depression has got me. I have 1 support person, not married etc. Impossible to date because I'm so sick but feel crappy. I also have no job. I'm highly educated but for the life of me I can't even flip through a magazine. I'm sleeping a lot, not eating very much. Only a smoothie for breakfast with all my meds.

I've had bowel troubles since 16 which limited my social life.
I was put on remicade about 7 years ago, which I think caused Pyoderma Gangernosum.....I spent 2 years in the hospital, fighting for my legs and life. Was in palliative care. Then I spent a year at home recovering, learning to walk etc. I was self employed part time but lost my business. I found IVIG which kept me in remission (with a few minor blips) enough that I secure a part time job, because I wanted to. I was so happy to be back to life!! I traveled, went skydiving etc etc. Then I got fired in July because of my illness, I needed 3 days off a month for IVIG....but also missed a lot of work due to 2 bouts of c-diff (thanks!)

I got a good severance plus UI so I decided to write my thesis...then look a small job.

But I can't work. I've lost count of the # of times I've gone. I'm so confused about what to try next....reading the thread on smoking....but I've never smoked in my life....waiting for LDN in the mail.....

BUT this post isn't about my next meds or symptoms....I'm just so tired and scared. I'm tired of taking 20 plus pills/day, watching what I eat when it doesn't seem to make a difference anymore. I'm taking my nephew for "swimming lessons" today....thinking that would help my mood but I'm shaking with fear that I'll poop in the pool....or what do I do with a 1 year old if I need to go running to a public toilet???

I can't concentrate long enough to even read the research on smoking etc...patch vs. cigs???

I'm sorry, I know I'm all over the place. I'm seeing a therapist once a month...that's all I can afford. I can't afford VSL anymore....which seemed to help me last year.....

I'm just so tired and depressed and lonely. Very hard to date at 40 when one is healthy, but i'm not. Last years remission and feelings of optimism are so long gone. I'm such a different person when I'm flaring and when I'm not.

Sorry I just needed to vent. I'm literally sobbing since 1 am.
Posted 4/2/2014 2:29 PM (GMT 0)
I'm so sorry... I can't offer you words of wisdom, & I know that's not what you want anyway! After so many years of feeling like you do now, may many times, I'm having surgery on 4/14- proctocolectomy with end ileo. And I'm HAPPY about it.... I'll be 44 this year, & just cannot devote one more minute to UC- not cures, not causes, not bathrooms... And get this- I have in fact, pooped in the pool once! At the YMCA... at 2:30pm! Everyone knows the AM's are the worst for accidents, but.. I ran out of that pool so fast, towel wrapped around me the whole time. Thankfully it stayed in my suit. I guess. Just know you're not alone!
Posted 4/2/2014 2:44 PM (GMT 0)
This disease is one incredible head trip, messes with us all emotionally and physically in all sorts of ways. It sounds like you are seeking therapy which can help. I'm only a few years into it and have issues coping at times and I can only imagine fighting it for many years. The one way to kick the disease's butt is through surgery. If you've struggled for so long and tried all of the treatments then perhaps it is time to evict that evil colon of yours, move on with enjoying your life, and stop worrying about uc.
Posted 4/2/2014 2:55 PM (GMT 0)
Sorry this isn't a surgery post. IT's about coping and depression. Not interested. My mom had her colon removed and continues to suffer horribly ever since. She regrets having an ostomy and would do anything to get her damaged colon back!

I haven't tried everything.....IVIG worked for 3 years and saved my life...for some reason it's not working as effectively....or my disease has gotten stronger. My point is that I'm too tired to even look at the other alternatives because of the depression. It's encouraging that I have so many options including the new biologics, smoking, LDN etc etc....I'm just so sad to loose my remission and my confident, kick ass beautiful person with drive and passion to this scared, depressed and lonely child who would rather not get outta bed even to poop. Too hard to see whats in the toilet.
Posted 4/2/2014 3:07 PM (GMT 0)
I'm curious - have you ever tried colostrum (bovine or goat) for your source of immunoglobins? There's a hyper immune-colostrum infused with rhTNF antibodies in the drug pipeline for UC at the moment, and it might be a good source of immunogloblins. I can't specify when it will be released, but read more about it here.
Posted 4/2/2014 3:18 PM (GMT 0)
I was in that place. Could hardly leave the house, worried I would lose job and insurance. Fortunately for me Lialda slowly worked. I had to add some pred, and stay on it much longer that I would prefer. But after many months of 20mg or 10mg, I have tapered down to 4md, and will soon go to 3.5mg. When I got run down and anemic I got iron infusions.

If I had gotten worse instead of better I would likely have tried a biologic, although I always worry about side effects.

I hope you get better. I can't say. I can say, I understand, I was there.
Posted 4/2/2014 3:27 PM (GMT 0)
Thank you for the empathy DB. That's what Im looking for..you don't have surgery to cure depression! It's a really bad spell....I'll never give up although today I would really, really like too!
Posted 4/2/2014 3:36 PM (GMT 0)
I'm pretty new to this, I was just diagnosed last month. That's not to say of course that I wasn't battling the symptoms for sometime before that. I find myself crying at the most random times, just worried about what the future holds for me and my family. I have 2 teenagers and a 5 month old. My oldest son was diagnosed with Crohn's at 11 years old and was terribly sick before that, I did a lot of research on that disease but I find it is much different than this one. He is currently on remicade every 8 weeks and is doing great! He had surgery to remove a very diseased piece of his intestine and is much better. Any ways, I find this group a big help. It's nice to know that there are people our there that have experienced the same thing. I find the advice I receive on here to be very helpful and the people are so caring because they have been there, done that. I can't offer advice on meds or anything of that nature because I haven't even seen a GI doctor yet. I don't intend on letting this disease run my life but, sometimes it just gets overwhelming, especially when you are not well. I hope you start feeling better soon and you can get on with the life you once knew to be good! You deserve it!
Posted 4/2/2014 3:38 PM (GMT 0)
You misunderstood me- I wasn't pushing surgery to you- just telling you that I've been in a similar place, know what you're feeling, & what my plans are. To let you know that someone was listening, that's all. Hence, my pool story!
Posted 4/2/2014 3:48 PM (GMT 0)
What is your insurance situation? Maybe you can do something to improve that so you can get more mental health help. Medicaid has been expanded to cover more mental health treatment and cover more people. Depends which state you live in. Do you have any income?
Posted 4/2/2014 4:00 PM (GMT 0)
hang in there rb :-)
Posted 4/2/2014 4:07 PM (GMT 0)
I am sorry you are so overwhelmed, some people with this disease really do have a horrific time of it...are you on antidepressants? because if not, it sounds like you need to be, or change what you are on. Do you think you could try to have more than just a smoothie at breakfast time, something more throughout the day? I know its difficult, but lack of nutrients wont be helping, also if you can manage it I think you might find the "smoking post" by enfyre interesting, as I definitely think that might be worth pursuing, you could try the patches first, as you have never smoked before...at this point you have nothing to lose...I do hope your feeling a bit better today.
Posted 4/2/2014 4:08 PM (GMT 0)
No EvaLou...not directed at you! I respect yr decision. I'm not feeling very strong & I'm so lonely ...without friends. I'll be thinking of you when I'm in the pool for sure!!

AZ--- no insurance, used it all up. I have disability income ....$700/mth.

I'm just so sad...great accomplishments when not flaring.
Posted 4/2/2014 4:17 PM (GMT 0)
all I know is it's hard to feel good when you feel like SSSSSShiiiiTTT!
Posted 4/2/2014 4:21 PM (GMT 0)
IMHO, you also need to get into some possible therapy as well. I know medicine for depression is not a definitive answer, but it also has a place in situations such as this to help you over the rough spots, which obviously you are having..have you looked into this?

I'm with you, i started in high school....
Posted 4/2/2014 4:23 PM (GMT 0)
With your income, you might be able to go on medicaid. What state do you live in?

Are you on SS disability and waiting for the 3 years for medicare? If so you should be medicaid eligible in every state. Talk to a social worker so you can get help with insurance so you can get more help with depression.
Posted 4/2/2014 4:25 PM (GMT 0)
she's in canada
Posted 4/2/2014 4:27 PM (GMT 0)
It's definitely difficult to even feel hopeful when you've regressed to this point.

Have you discussed other options with your doctor, even regarding meds for depression? It could bring you to have more energy to pursue further treatments.

It seems, in part, that your mom's experience may have coloured your perspective on surgery....Are there other people (maybe in the CCFC chapter in your area) you can connect with?

What is your dosage for the Pentasa and rectal meds?
What about trying steroid topicals?

q
Posted 4/2/2014 4:33 PM (GMT 0)
Sorry you're not doing well. Like many things in life things can look pretty bleak but then 5 or 10 years down the road you can look back on this as the low point of your life. I know that's not easy to understand now and that you're probably thinking that there's no guarantee that 5 or 10 years from now you will be doing better but it can very easily happen and probably will.
Posted 4/2/2014 4:38 PM (GMT 0)

Scott Z said...
she's in canada

The signature glitch strikes again.
Posted 4/2/2014 4:45 PM (GMT 0)
I just want to send you hugs. This crap is hard to deal with especially in the midst of a bad flair. Your internet friends are all here for you.
B
Posted 4/2/2014 8:19 PM (GMT 0)
Reading and "listening" ... Vent away. :)
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