Tired of being Tired

I know this has probably been a huge topic in the past with other members but I'm so done with this.  I'm on my 2nd year of diagnosis with Pan Colitis and I'm just so tired of feeling this way ALL the time.  I just want to lay around and sleep all the time and I can't because I'm a single mom with 3 kids.  My body hurts all the time and I really hate the restroom.  I've been on Humira for 3 months now with no result which has earned me a colonoscopy because I keep getting C-Diff and my symptoms aren't improving.  

Any encouragement or help would be great right about now.  I know that we are all suffering i just feel so alone because well I am alone in this.  Everyone just sees me as being sick again.  "You're always sick" is all I hear.  My kids can't go anywhere cause I dont want to risk having an accident in public, I have enough in private.  When we do go somewhere I stress out about where the restrooms are and if they are clean or I'm hurting and don't want to engage with my kids cause I'm so tired.  I want the surgery and I've asked for it.  I've spent two years constantly sick and my DR is saying it's still premature.  I can't live like this anymore.

Anything work for anyone??? 

You poor thing, its no fun is it. Nobody will understand how you feel unless they have suffered it themselves and the chances of a medic or doctor having suffered with IBD are slim.

The fact you have had blood transfusions suggests to me that you have experienced heavy blood loss when flaring which doesn't sound like a mild dose to me.

Some patients have had surgery within weeks of diagnosis so there is not really an argument for it being too early for surgery.
Humera is more effective towards Chrons disease rather than UC, Infliximab is usually used for UC cases however it didn't work for me.
Although i don't feel it, i am lucky in that I have a few friends who have CD and UC between them so we can talk about how we feel and how we are coping. I'm the worst out of all of us in that no drug therapy is working for me. I have had UC for 21 years since the age of 14, the first few years i was well, not being any different than a normal person. After 5-10 years my condition slowly got a bit worse each year but i remained fully functional with the aid of steroids which i was on for far too long.
Recently i have deteriorated badly to the point where my consultant rated me as a 4 on the mayo scale labelling me as a severe case of UC. He had been talking about alternatives to the usual drug therapy but they were either very new or had limited success. Just before going in to the endoscopy room with him i said i want to look at surgery, he said i was making the right choice.
Only you know in your own mind and body when its time to stop trying medications and opt for the final solution.
The feeling drained and tired will only get worse if your inflammation isn't brought under control. It will affect you mentally and make you even more depressed than you feel already.
I was on anti depressants for months due to me being a miserable git, nothing worked there either leading us to the conclusion that the underlying condition needs to be sorted rather than filling me with happy pills.
The being afraid of going out is something all of us experience, worrying about it happening is often what causes the problem in the first place. I get "just forget about it and you'll be ok" that from someone who i cant make understand how we feel. When i have been in a real bad way I have worn adult nappies, i have had accidents in them too but it saves the embarrassment of a total public disaster and also helps the worry factor too. Coming back from a scope i have worn them too as the gas that comes out is usually accompanied with saline flush or mucus, or even blood, its certainly not dry anyway, they have saved me many times.

If your current GI won't let you consider surgery find one that will, they aren't the ones with their life on hold permanently.

You will have to think about your child care though when you are recovering from surgery, you will not be in any fit state to pick up little ones of do mountains of washing, not for weeks, minimum! How old are your children?

Feeling drained and feeling ill has become the 'norm' for me making me think i cant remember feeling well and good.

I really only noticed and decided i need to do something about this when another person in the same trade as me was talking at the trade counter having just come back from holiday saying how good he was feeling....i thought to myself....i never feel like that.

Find another GI who will listen and will accept your concerns, its your body and life, not theirs.

I am really tired too. I actually can't imagine having kids because I would be exactly how you are. All you want to do is expend energy with them but you really don't have the energy to do anything. I think if you're tried Aza, Humira, 5ASAs and pred and none have given you a long remission, you have tried a lot and surgery is not premature. Like gary said, you should see another doctor and get the referral to see a surgeon if you need it. If not, you can just go and talk to a few surgeons and get familiarized with the process. It's a long process healing from that surgery. In my opinion, I would just about go through any procedure over that one but I do understand that this may be the only option for you to get quality of life back.

You could also try some alternative treatments such as FT or diet (diet didn't work for me but it works for many). I haven't tried FT. Some members are using LDN with good luck too. We had a few get into remission with triple antibiotic therapy. Remicade is mainstream but may provide more results than Humira. There are also clinical trials.

As for fatigue, I don't know what to tell you. A few people who had surgery said that it helped their fatigue. I think in my case it would not help because I had the fatigue before the UC. I've always had a problem with fatigue.

Wooly-bobs,

It has been a roller coaster ride for me and I'm so over this. I have found one person that I randomly met that has Crohn's and she's been way worse than me but she's had it for 20 years. She has switched to natural foods and has been recommending some things just a matter of getting what she's saying to try. She recently told me about kefir and how it's turned her life around. I just don't know if I can get around the drinking of fermented liquid. I can't knock it cause I've never tried it but it just sounds horrid and I don't even eat Blue Cheese cause it creeps me out. LOL...

I just struggle so much these days and I'm trusting my GI is making the right decisions for me. Every doctor around says they send UC and Crohns patients to my GI clinic cause they are the best in my area. I just am so frustrated with the amount of meds I'm taking and I see nothing, which in turn makes me stop taking my meds cause what's the point. Especially the Azathioprine - which is toxic and when I was hospitalized the first time, my pregnant nurse wasn't even allowed to dispense it with gloves on. What does that tell me about what I'm swallowing every day?? Finally got the approval to stop taking Asacol which was pointless from the beg cause it NEVER helped and was the most expensive of all my meds. My GI said Humira or Remicaide and we went with Humira because of the cost and convenience but now it's now workin, so I'm thinking he's going to try Remicaide next all the while my medical bills are literally bankrupting me and I have insurance.

He doesn't want to do the surgery just yet cause he says my weight might be an issue. I lost weight when I was first diagnosed and now it just stays stagnent. Probably from my new stronger anti depressant or from the Vancomycin because I notice while on the Vanco, I feel hunger pains all the time. I only take 20 mg of prednisone cause I have been on it almost non-stop since diagnosis. I hate taking the antibiotic but with me continually getting C-Diff I have to stay on it.

As for my kids, they are 3, 5 & 15. So I'm good with the help cause of my oldest but my 3 year old is always attached at my hip when I'm home crawling all over me cause she knows I'm not well. Always asking if my tummy hurts and kissing me. Breaks my heart that my little ones see me as always sick. That's why I'm desperate to get this dealt with cause they are so little. My 15 yr old had me at my best so I feel guilty for my little ones.

I'm not sure where I stand on the Mayo scale but I'm a severe case as well. Totally uncontrollable with meds and my colon is 100% affected. I'm sorry you have had to put up with this as long as you have with no relief. I'm only on year two and I'm so beyond ready to throw in the towel. I can't imagine going as long as you have. I honestly do not know how so many of you have managed and I'm a pretty strong willed person. This has truly kicked me in the rear and I'm breaking apart. Like my headline, Tired of being Tired. I know everyone here is probably tired of it also. I have been telling people I just want to go back to what it was like before which I honestly don't remember much of because this is my norm and I hate it as most of us do. I thought I had accepted it until the last couple weeks and it's really hit me hard cause of the problems I'm still having. It's just getting more and more difficult to get up every day to go to work and sit at a desk all day. Have had to be moved from my team of coworkers to a corner by the bathroom so now I am alone most of the day. Feeling overwhelmed with everything this is taking from me. I'm not sure if I should plan a camping trip for me and my kids this summer cause I haven't gone camping since diagnosis and especially since the accidents started setting in a little over a year ago which completely mortified me when it started happening. I did not know that was something that would happen so imagine my surprise the first time I lost control. My family doc wants me to get counseling because of this and what's its done to me and my family. Just another hour a week of sitting on a couch stressing about whether my stomach is going to start cramping and if I'm going to have to jump to run to the restroom which it always seems to do when I feel like i can't make a quick escape.

Thanks for the kind words - like I said, don't really have many that understand me. It's nice to talk to those that know.

GI docs are generally anti-surgery. Go straight to a surgeon for a consult. I was feeling the same way - couldn't go anywhere or be an active participant in my kids' lives. Since surgery, my quality if life is so much better and I am almost never in the bathroom!