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Feeling sorry for myself!!

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Ulcerative Colitis
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Posted 9/25/2015 11:19 PM (GMT 0)
Ever feel like you are totally alone?! Just wanting to vent is all ;) I have had UC for about 10 years. Been in denial the entire time ;) Been flaring since April and after being on Imuran for the past 5 years, am now going to be started on Humira. My husband has no idea how sick I've been. Mind you, I haven't let on how crapty I feel...I just truck on! I've had to make all sorts of important decisions without him (who doesn't understand anyway)...but still...kind of wish he would enquire. I'm scared to start Humira. All of the meds for this "inconvenience" are scary. Now lets add another one!
Sorry...honestly just need to vent and now that my pitty party is over, I will keep going and keep my chin up and crap out of my pants!! haha!! (sorry, bad sense of humour)
Posted 9/25/2015 11:42 PM (GMT 0)
Well hopefully you'll be pleasantly surprised with Humira like I was...and if it doesn't work for you there's other biologic options to choose from as well...only side effect I've had with Humira (and I take it weekly, not biweekly) is headaches but taking an antihistamine before bed the days I do my shots has stopped those headaches in their tracks.
Posted 9/26/2015 12:14 AM (GMT 0)
Never feel bad about feeling sorry for yourself every now and again. This disease stinks and I have been having a little pity party for myself lately, too.
I hope humira works for you, I get the fear about starting it, but what are your other options? We just have to keep on going, whether we want to or not!
Posted 9/26/2015 1:03 AM (GMT 0)
From what I understand, I have to take 4 shots and then a week or 2 later 2 shots, and then 1 shot every 2 weeks. I think that is the standard starting amount. I am not happy about taking Imuran and Humira at the same time, but it takes time to take effect. I'm just weaning off retention enemas (thank goodness!!) so hopefully I will be able to get off them...second round this flare so who knows...I swear, if I was a total whiner, my husband would be screwed! I just get on with it, never complain, (well...until now ;) ) I am terrified that my kids will get this, and then he will blame me for it...ok...no more pitty party!! Perhaps its a 'wine' kinda night !! haha
Posted 9/26/2015 1:37 AM (GMT 0)
I read your posts and being depressed is part of the disease. I've been on Humira for 2 yrs and it's made a difference. I can't take Imuran...low platlets...but I'm on mesalamine, Lialda, 4 every a.m. And, there's nothing you can do but role with the illness, some days are better than others. You've learned, I'm sure, what foods will react on you and so you've learned to do without. Remember, there's always surgery as an option. Maybe you need an anti-depressant. When you have a chronic illness you look at the world thru that prism and an anti-depressant might help.
God love ya, keep on truckin.
Posted 9/26/2015 7:21 AM (GMT 0)
Bright side is you can take biologics. A lot of people can't for whatever reason. It sucks but at least there are meds. Btw your husband sounds like a jerk, just sayin! ;-(
Posted 9/27/2015 1:07 AM (GMT 0)
Maybe you should give your husband a chance. I did mine and it is great to have some support. I've never included him before. My fault. How could he just know. I am sorry to worry him but so nice to tell him how I really feel.
Posted 9/27/2015 1:16 AM (GMT 0)
Why are you not sharing such an important part of your life (UC) with your husband? Are you afraid he'll leave? Why be married if that person isn't there for you when you need a shoulder to cry on or just someone to talk to?

You should not feel like you are totally alone if you are actually married. Marriage is a partnership, in sickness and in health…is this what your mother did and you are doing the same? You deserve love when you need it most, when you are scared and feeling alone. Please talk to a therapist who might be able to help you talk to your husband. It's important and you need it. Emotional support helps UC too. My husband is one of the best things in my life, I hope you can get that too.
Posted 9/27/2015 1:23 AM (GMT 0)
I second ima! My husband may not fully understand what it feels like physically and how much it beats me up emotionally but he is always there to listen and help in anyway he can. Try and let him in. I know how hard that can be. I'm type a. Gotta have control. This disease has humbled me 15 times over.

You are never alone and I hope this forum helps you see we are all trying to roll with this disease.
Posted 9/27/2015 1:24 AM (GMT 0)
I say start "whining." This is a serious disease with very difficult symptoms and everyone in your life should know that. Even your kids, in a not scary way.

If the tables were turned and your husband had this disease, wouldn't you want him to share his experiences and feelings with you? Give him a chance to step up. And give yourself a break. No need to be a superhero.
Posted 9/27/2015 4:40 AM (GMT 0)
Empathy doesn't come easily to some healthy people - there's a lack of understanding of what living with a chronic, incurible disease is all about.

Aside from feeling pretty crappy intestinal-wise, emotional fluctuations are an added bonus. Some days I contemplate leaving my husband for his lack of empathy (and other issues too) but I'm too insecure to go through with it! Such a sad sack I can be! rolleyes
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