I'm lucky - so why am I so sad?

[ShellieFox]

It could be so much worse. I was diagnosed five years ago officially with Crohns. I'm overweight, so every doctor questions the diagnosis. I had the fancy blood work done to confirm it. I just got out of the hospital and (after the doc again questioned the crohns diagnosis) was diagnosed with ulcerative colitis, so I guess that changes my official diagnosis to IBD. Promised I'd stay on the meds this time, but won't. It doesn't help. I swear. I'm on asacol. I've tried mesalsmine before and the 5-stuff, forget what it's called. Just seems like a waste of money. They wanted me to try biological meds but really, it's not that bad.

I've been hospitalized four times for flares. Every time, they send me home with scripts but no real advice on what to do to avoid it again. And I take the meds faithfully for a while, but feel no better. So inevitably, I stop.

So yeah, it could be worse. I could have had surgery, though I haven't. I know how bad it could get. I'm lucky to be over 50 and not be suffering as bad as some.

I fight with depression now. My husband has been out of work for three years. Ive been the breadwinner. He keeps promising that he will take the load off of me, yet year after year, here I am. I work a high stress job and think if he would get back to work, I could take it easy and it would go away. Guess I will just keep dreaming.

I hate the depressing holidays. Sorry.

 

[crash]

I was with you too....so I started doing a lot of research on my own...couldn't seem to get any real answers from M.D.s I was diagnosed with Crohns June 29, 2013 and had surgery 7/6/2013 then one week later ended up in hospital for a week from dehydration so after 3 weeks I was 25 pounds lighter ( I was 126). I came home and was 99 pounds I looked in the mirror and couldn't believe what I had been thru. I went back to work after 10 weeks and was nervous about having a bag. Did ok and the 6 weeks later I had the reversal surgery. I felt like a prisoner in my own home. I have been back to work one week and am still afraid to eat at work because of going #2 all the time. I have so much gas and the pain where they reconnected me hurts 24/7 I was told that could be referred pain from the incisions well it doesn't hurt to put pressure on those areas soooo you see I DID NOT EVEN WANT TO PUT THE TREE UP let alone go to someone elses for the holidays....didn't do anything for thanksgiving either. I am also in my 50's and would like a bit more of a stress free job but I'm the one with the insurance and retirement plan etc etc....somedays I would just like to run away from everyone but then I would have to deal with them when they find me LOL....hang in there....don't let it get to you - look in the mirror every morning and smile and tell yourself something awesome !

 

[Jennifer]

I'm sorry you're feeling so down ShellieFox.

Yes things could be worse but things could also be better so there's no shame in feeling this way.

If you're being hospitalized during your flares then you do need better treatment. Mesalamine really isn't the best treatment if you actually have Crohn's because its topical and Crohn's can cause inflammation deeper in the intestinal lining. http://www.crohnsforum.com/showthread.php?t=50253 Have you tried Purinethol (Mercaptopurine), Imuran (Azathioprine) or Methotrexate if you aren't quite willing to try biologics (Remicade, Humira, Cimzia and Tysabri)? Keep in mind that it can take up to 3 months for these medications (including Mesalamine meds) to start working so you need to give them time. These can also be taken in combination with other meds to obtain remission.

It sounds to me like you don't have a good doctor by your side checking up on you, adjusting your meds and doing tests as needed. Have you considered seeing another GI? The goal here is for you to not have to have surgery and suffer worse as times goes on. Chronic inflammation builds up over time and can create a narrowing which could eventually cause a blockage and could require surgery. I hope that you'll be able to find something that works for you so you can have a better quality of life.

My oldest sister doesn't have Crohn's but was in a similar situation where she was the breadwinner of the family and asked her husband multiple times to find a job to help out. He never did. I'm not suggesting that you do this but what she eventually did was quit her job and didn't tell her husband until about 2 weeks before her last day at her job. Her husband found a job real fast. I thought it was irresponsible of her because she has two kids to take care of but luckily he found a job quickly. Again I'm not saying that you should do that, clearly, but maybe you could talk to your husband again about how you need to reduce the stress in your life and that doing so may help to reduce your flares as reducing your stress level can help.

 

[Nanny]

I'm new here, but I can totally relate. You are so sad because you have depression. No, I'm not a doctor, but I know the feeling. I have had crohns for years, moderate compared to a lot of people, but still........talk to your doctor about some medical help. I have been on lexapro for years with great results. It also helps with the anxiety during flare ups. I have been on biologics for years. First remicade and now cimzia. My advice is to consider a biologic if your insurance is good. It's amazing how good you can feel when your treatment is working and your depression is under control. I hope you can find the right kind of help.

 

[Kero]

Depression is very common to have when you have Crohns, from what I have read. Talk to your doctor, it can spiral very quickly out of control. Lots of :hugs: