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meg_smitty posted:
Hi, everyone. I'm new here, and I was hoping someone might be able to help me. I'm 28, and I've had UC for 3 years. The first 2 were fine after I recovered from the initial flare, but this year has been terrible.

I've been sick since May '09. I had my gallbladder removed in late December '09 (0% functioning), and I thought I would finally start to feel better. June '10, and most days I still feel like I've been hit by a truck. I can't work an 8-hr day, all I do is lay around and then I think I've got to work up my own energy level so I go for short walks and do some light housework or just try to sit up all day, but I just seem to feel sicker.

Outward symptoms of UC such as bleeding come and go, but the pain, nausea, fatigue and overall wretchedness, while they wax and wane, never go away. I've tried every kind of UC med out there, had tests and more tests, I've changed my diet (even gluten-free for a while). Nothing. I've been to several doctors, and they all say it's just a tough year for the UC.

Those who have lived with an IBS for a while, can that be true? Can we really be sick for years at a time and require months to recover?

I'm wondering what kind of life I've got to look forward to because this is not what I had in mind. I had a great career that I loved, I worked 24hr shifts regularly, I ran 15 miles a week and lifted weights, I went to concerts and plays and parties, we planned on kids and a house and traveling... now I don't even recognize myself when I look in the mirror.

Are there any stories of physical triumph out there? Or do I need to start redefining who I am?
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mindyj1971 responded:
Hello, and welcome to the board! There is so much support on here; I'm glad that you have joined us!

I wish I had some solid answers for you, but I have pretty much been in the same boat since my diagnosis of Crohn's in Sept 08. I have never been in remission. Like you, I had a career as a medical assistant that I absolutely loved, but had to quit after 12 years there because I was just so sick. My disability was approved, thank goodness! I have already had a resection, rectal surgery and just this March had a temporary colostomy done to try to give my bowels a rest and to put some weight back on me.

Don't give up on your dreams. A family is still possible, you will just have to take extra precautions and make sure that you are talking to your doctors before you start trying. I don't know how many told me when I was first diagnosed that I should get pregnant, but they told me that your body concentrates on taking care of the baby and can actually put you into remission. I personally know someone who suffered for years with this disease and once she got pregnant, she went into remission and has never had any more complications. Now, I don't know how much science is behind that. I already have 2 kids and knew that a third was not an option for me. I guess what I am saying is that those things are still possible for you. Like your doc said, you are just having a rough year. And yes, it can go on that long and it can take months and months to get back to a semi-normal routine. Is there anyway you can cut your hours at work or even go on short-term disability until your body recovers a bit? I wish I had better advice for you, but I have learned that when I am at my worst, it is best just to be kind to my body and not try to push it. I am almost always a little dehydrated....is that something that you have had to deal with? With as crappy as you say you feel, I wouldn't be surprised if you weren't a little dehydrated. It can absolutely suck the life out of you. I usually try to pump up the Gatorade and try to get on top of it myself. I won't lie to you though, it does get away from me and I have been hospitalized numerous times to get fluids put back in me.

Please keep us informed on how you are doing; we are here night and day! We all know what you are going through and how frustrating it all is!

Hugs to you-
Mindy
 
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meg_smitty replied to mindyj1971's response:
Thanks for the kind words--and the hope! It sounds like you've had a tough couple of years. Good days and bad days... it's hard when the bad out number the good for a long stretch. I feel a little like my whole world is this apartment. Meh. Well, here's to the good days and the mental stamina to gracefully accept the bad.
A thorn was given me in the flesh, a messenger of Satan to harass me. I begged the Lord to take it, but He said to me, My grace is sufficient for you. -- St. Paul
 
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TigerLily88 replied to meg_smitty's response:
Hello! I am new to this site as well and after I read your post, I thought I should comment on it. I have had several of the same issues that you have had. I was diagnosed with UC 2 years ago (August 2008) when I was 20 and in July of '09 I had my gallbladder removed. I thought the worst of my problems were behind me, but then my hemoglobin dropped and my platelet count skyrocketed into the 900s. It turns out I had low Iron levels and required 2 iron IVs to get me to a stable position. Have you had a CBC lately? (Every time I mentioned my rising platelet count to my gastroenterologist, he didn't seem concerned --> it wasn't until I went to a hemotologist that I found out I had a serious problem) After the Iron IVs and being on prednisone for a while, it seemed to help reduce my symptoms.

Between June 2008 until September 2009 I had a continuous flare-up, so I can relate to what you are going through! Something that has worked for me is Turmeric.....it is available in herb form or can be bought at Wal-Mart in capsule form....it doesn't smell good, but it has helped me out a lot.

I'm sorry to hear that you've been through such a tough time, I completely understand all your concerns!! Hang in there!!!
 
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LauraLW responded:
Hi Meg, I see your original post was 2yrs ago. I hope that these years have found you healthier and happier. I was touched by your post for a number of reasons. You're from SD! I live in extreme NW Iowa and have also lived in SF, SD for a few years and I still doctor there. (If you ever have to have surgery, Dr. Rolfsmeyer is the BEST.) I think your questions of physical triumph vs redefinition are interesting.
There are most definately triumphs. I hope you've found many inspirational stories and perhaps had your own triumphs. IBD seems to have an ebb and flow. You will be sicker than you can ever imagine. You will function with a daily level of pain that many can never understand. Then you will have a relief of that pain and though you may not be able to run marathons or work 24hr shifts, you will find the simple joys in everything you do. I'm glad that you reached out for help through the blog. Never be ashamed to admit you need help. I'm 30 and have had a very long road with Crohns-many hospitalizations/ surguries/unusal complications. I was told I should never have kids. My little girl is now 1. I am so blessed to have her. I was very sick again after she was born and I now have a permanent colostomy. When I read your blog, it reminded me of how I felt shortly after surgery. I felt like I'd lost my life, like I'd lost myself. I was depressed. I'm so glad I was honest with my doctors about my depression and took low dose meds for 9months. It helped me to stop crying all the time. It helped me to stop that negative record that kept playing in my head. I now can see my surgery as a blessing. Do you need to start redefining who you are? Absolutely. When you got your period your first time, when you graduated college, when you got married, you redefined yourself. You will never be done redefining yourself. And only you have control over how you do that. You can choose to define yourself as a victim of illness. You could. I don't know you all that well, but it doesn't seem like you. The most inspirational person I ever met was named Roger. I worked at a place for adults with disabilities. Roger was born with Cerebal Palsey. His brain functions at a normal level but he is severly physically disabled. He can only walk on his knees, has partial use of one hand and basically none with the other. He talks using a computer on the front of his wheelchair. This man insists on being independant in his dressing (except buttons) and bathroom. It takes him close to an hour to get dressed in the morning, but he does it, by himself every day. Buzzes us when he's ready to get in his chair. He knows that because there was a complication at his birth, he was robbed of a "normal" life. And he is probably one of the most joyous people I know. My hope for you is that you can allow yourself to get whatever help you need, that you can weather the ups and downs of UC, and that you can maybe find your own Roger.


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