Tired and frustrated

Crohn's Disease Forum

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I was diagnosed with Crohn's October 2003. It took approximately 8-10 months to arrive at a diagnosis. It began with sharp upper abdominal pain (under my ribs and at the center of my sternum). Eventually the pain grew so severe and felt like a stabbing pain I would have to hold my breath or just cry my way through it. After a couple of months I began feeling pretty fatigued and nauseated. From there, I began vomiting, experiencing diarrhea (I'd had a cholecystectomy performed in 11/99), chills, bone/muscle aches, low-grade temps, and appetite/weight loss.

I was subjected to upper and lower scopes, but nothing was found, so my GI essentially believed nothing was wrong and that it was just a simple case of IBS. I was constantly on Prednisone and 6MP, Colozal, Asacol, Mesalamine and others. I continued to grow sicker and more miserable. Depression slowly crept in as I suffered yet tried to put on a brave face.

Many months later, I'd been put in the hospital for an elevated white count. No imaging was performed at all. They just did another CBC/CMP the next morning, and they sent me home as my white count had dropped a little. Several days later, I was seen in my doc's office worse than ever. My nurse practitioner began pressing on my belly than instructed me to wait and she'd return. She returned with my regular physician. He palpated my abdomen as well, instructed me that I was to be hospitalized again and immediately sent me over for an abdominal ultrasound.

After the ultrasound was done, a friend of mine was walking me towards the door when my doc caught us. He told us that he was personally taking me to the E.R. because we had things to discuss. I was alone and scared to death. I believed it had to be extremely bad if my doc was personally escorting me to the hospital.

As soon as we got there, I had a CT done and two hours later a surgeon informed me that I had an abdominal mass the size of an orange, and he would take me for emergent surgery early the next morning. I shot past scared straight to petrified!

My mom, sister and husband were there to hear the news, and that the doctor suspected that Crohns was the culprit.

The next morning I had surgery and the doctor's diagnosis was confirmed. I did, indeed, have Crohns.

Since then it's been a constant battle and I feel like hell more than I feel good. But that's the way it is, I suppose. However, it could always be worse, or so I tell myself.

Anyway, that's pretty much the beginning of my battle. I just discovered today that my B12's so low that I have to get a double shot of it tomorrow afternoon at the doc's office.

Maybe one day we'll be lucky to have a cure for it...one day. :)
 
So sorry it took a major surgery just to discover the Crohn's! It must have been horrible living with that for months and having no one doing anything about it. Are you on any meds now since the surgery? Are you still having flares afterwards?
 
SarahAnne,

It was a major frustration to endure all of that, yet I was relieved to finally know what was wrong and that it wasn't in my head. My doc just started me on Apriso last week and I have to go see him today. I was informed by his nurse yesterday that my B12 is so low that I have to get a double shot tomorrow. But if it helps..bring it on. My doc's probably gonna start me back on an immunomodulator again. I flare up often but they're not usually big as I don't give them time. The moment I first notice signs of trouble, I'm on the phone to the doc's office. I was on Remicade a couple of years ago, but taken off due to its eventual failure, and it was also suspected that the medicine gave me Acute Renal Failure (which resolved within a couple months of that happening). I've also had two ERCP's done. I've been through so many tests and been on so many meds that at time I would love to talk to someone with similar experiences so that I don't feel so alone and isolated. I've only had the one resection, thank goodness! Unfortunately after my first one,that night I began running a high fever (up to about105) and the lowest they could get it was 101, so they had to get a bair hugger blanket to lower my body temp along with the alternating Tylenol and Motrin dosages. It was a rather difficult experience. I'd like to hear more about your experiences, if you don't mind. Thanks for talking with me, Sarah Anne! I sincerely appreciate it! ;)
 
Hi darkmuse and :welcome:

I'm so sorry to hear of all you have had to endure. :(

My daughter was also diagnosed on the operating table, talk about life changing!

Did you have your terminal ileum resected? If so you should remain on B12 injections for life as this is the only area of the bowel where it is absorbed.

You have found the right place for comfort and support. You will find others here that have the same pain, the same op, the same meds...maybe not all together but the same sort of experiences you have had each of those. You are far alone hun so kick those shoes off, put your feet up and join right in...welcome aboard!

Good luck with your appointment and keep us posted.

Dusty. :heart:
 
DustyKat,

Yes, my terminal ileum and a portion of my colon was resected. It was rough, I won't lie. Unfortunately, for whatever reason, after I began having kids my body went through an upside down roller coaster. Sept. 1999, I had my first child. Two months later I had a cholecystectomy. Aug. 2000, I had to have a parathyroidectomy due to a tumor on one of my parathyroid glands (it turned out benign, thank goodness). Sept. 2001, I had my second child and the rest of the year was uneventful. Nov. 2002, I had my third and final child and the next day had a tubal ligation performed. Oct. 2003, I underwent my colon resection/appendectomy. Finally, in July of 2006, I had to undergo bilateral mammoplasty (breast reduction). All of this was overwhelming for a 6-7 year period.

I'll have to take B12 injections the rest of my life and probably have to take oral supplements as well. I have to take 50,000IU VitaminD monthly, and I have to restart Calcium.

It doesn't help that while I'm trying to live my life and work (I work at a local hospital as an aide) that I'm dealing with all these symptoms and pain and diarrhea. What makes me angry is the ones that come in as pain medicine seekers, and they try to get you to believe that everything is so severe that they can't even work. I want so badly to yell and tell them what about us that are suffering, doing something about it and still working? If we can do it, why can't you? This is just the tip of the iceberg of what I want to tell them.

I know there are IBD sufferers and RA and other painful diseases that affect people all the time and they can't work. I have no problem with them and I can understand. I'm just tired of the government system enabling all these lazy people to work while we struggle to get to work and make it through our shifts.

Sorry about the rant Dusty. That's just another of my frustrations. Have a good day. I hope your daughter is doing well.
 
Hi and welcome! I hope switching up your treatment and trying a immunomodulator again will get you feeling better. And I hope the B12 shots help, as well. You said it, it isn't easy pushing through life and work when you feel so crumby. There are many days I wish I could just stay in bed. But we have to keep trucking! I just try to push through the tough days with hope tomorrow will be better.

Let us know how today went!
 
Dusty, my doctor's appointment went fine. I'm taking Apriso 0.375mg 3 pills daily, probiotics, calcium, Vitamin D 50,000IU monthly and currently B12 shots- 2,000mcg. Three weeks from now I have to get my B12 level rechecked and if it's still pretty low than my doc said he'd give me the equivalent of a five shot dose. Yikes! Anyway, we'll see if the shot helps out....
 

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