It's all coming together...

[Tabbyg]

Hi, I just found this site today while googling Crohn's disease and looking up some information.  I finally feel like everything has come together enough that the doctors are ready to listen to me.  I feel like I've been passed around, time and time again... and now my symptoms have gotten worse enough that they're not ignoring it!

I've always been extremely gassy -- had times where no matter what I ate, I'd have to head right to the restroom.  I had my first child in 2007, and ever since I delivered him I've had pain under my ribs & along the left side of my abdomen.  It's a dull-severe aching, throbbing, stabbing pain.  Some days I don't feel it as much, other days it kills me.  Just recently in the past few weeks it's gotten much worse, and I have a lot of upper abdominal/diaphragm pain.  

Last week I was in the ER with an awful viral infection, went home and felt much better -- until that evening I started having awful abdominal pain.  I compare this pain to eating something sour, the feeling of everything puckering up in our mouth -- except all over my belly.  I would cramp up, like a contraction and it would last for at least 2 minutes.  They would come every 10-30 minutes, afterwards I'd have to run to the restroom.  I started out with runny diarrhea, that quickly changed from yellow to orange to bloody - bright red/brownish.  I was going every 30 minutes and it wasn't stopping so I ended back in the ER.  They did nothing for me, but said it sounded like either IBS or Crohn's, or another IBD... I was to follow up with my PCP & see a GI doctor for a colonoscopy.

I've been wondering for the past few years if it wasn't Crohn's or UC -- my brother was diagnosed with both at 14, and I have read that having a sibling with either, your chances are 30% higher than someone without a family history.  Talking with him Saturday, all my symptoms were the same while he waited to be diagnosed.  All his CT's came back normal, as did his bloodwork.  It took a colonoscopy to see his entire GI tract was covered in ulcers and he was VERY sick.  I know I'm not quite as sick as he was at the time, but I know something isn't right.  

I'm also VERY, VERY exhausted.  This isn't the "my kids have kept me up all night" kind of tired.  If I could close my eyes, I'd sleep the entire day.  I was thinking mono -- but those results came back negative.  

The bloody stool has stopped since Saturday evening, but it's still watery diahrrea, and changes color from yellow to orange/red.  I've gone 3 times today -- and my appetite has gone down.  I've also been cramping up quite a bit.  I've gotten really use to the pain though -- some days I barely even notice it, but it's always there.

I'm just hoping for a diagnosis -- even if it is UC or Crohn's... it's a diagnosis and I can deal with it.  I think not knowing is the hardest part.

Anyone else have similar symptoms?

[coughting]

Yes, everyones symptoms are often different.  I had a colonoscopy this year and it shows that my chrons is mild at this time.  However, I do have diarreha often and that is just a symptom that I have learned to live with.  The more fiber I eat the better.  But at least I don't have the pain and chills so often associated with chrons.  

Tabby and April,
My first symptom was diarreha.  Then I would have a spike of fever with chills so bad that I thought I would freeze to death.  Then the next day I was so washed out that all I could do was sleep.  Couldn't even watch TV, just sleep.   After a couple of years of these symptoms I was diagnosed with chrons.  The doctor has said that he now thinks I had chrons for years but with symptoms.  They did a genetic blood test that showed I had the marker for chrons.    Then the pain began, then weight loss.  I had one pain that litterly made me fall out of the chair.  I started Remicade and started to feel much much better.  Then I had a bladder infection that wouldn't clear up.  They finally found a fistula from the intestine to the bladder and decided on surgery.  I tried to get the surgeon just to repair the fistula but he said no he would have to also do a bowel resection which I fought tooth and nail against.  Thank goodness I had a great surgeon who knew what he was doing.  When they did the resection he stated that he didn't know how I had stood it that the bowel was in a mass state.  When the did the workup on the bowel removed they found a cancer, but thank goodness it was early and no further treatment, other than regular visits to the oncologist, were needed.  
As I said earlier, I am feeling good at this time and hopefully it will continue.  Of course I am always watching for signs of a flare up.
There is no cure for chrons at this time, but hopefully someday there will be.
Stay happy and healthy.

[April2]

Tabbyg, I've never had the blood, but the gassiness, loose bm's, nausea and stomaches I get a lot. I've also been tired a lot for so long I just thought there was something wrong with me. I didn't know tiredness could be associated with this! It's interesting how different people have different reactions. Some are the same and some are different. I think it makes understanding this disease that much harder.
And coughting, I so relate to what you're saying. People don't understand (or maybe want to understand!) how you're feeling, especially if you look pretty normal and healthy. Sometimes I think they think we're hypochondriacs or something. I think we're supposed to be stick thin and look like death warmed over before they will believe we have this. People just don't understand! They don't understand anything about what we may be going through. And it's not exactly something we want to discuss in polite company either! That's why I'm glad they have this forum so we can all talk and discuss things without fearing we're going to turn people away or they don't understand.
I too, had a bowel resection 2 years ago and am supposed to be in remission, although I've had some symptoms for awhile now that are making me wonder if I'm having a flare up or just a reaction to certain foods. I'm trying to look into that.

Like you, Tabbyg, it took awhile to get a diagnosis. It didn't show up in a blood test, etc. It wasn't until I had a obstruction and a mass removed from my small intestine and tested that they said it was Crohns. It surprised all of us as I didn't seem to show typical symptoms of Crohns. I'm beginning to think this disease is more complex than it first appears.
I hope you get a diagnosis soon. I know how it feels to be left hanging and wondering. Let us know how everything goes and what you find out! Take care.

[coughting]

Chrons disease is one that if you don't have it you don't understand.  People will look completely healthy with chrons and be so weak and tired of hurting they can't stand it.

Then other times they will feel fine when it is in remission.  So people think we are just putting on and wanting attention.  

Hopefully your dr's will get you both in remission.  2 years ago I had bowel resection and so far am still in remission.  As a matter of fact, June 27th is when I had the surgery.  If ever you need surgery, and please know not everyone does need surgery but respond well to meds, find the best bariatric surgeon you can find who is great at laproscopic.

Here is to feeling better.

[lovethebops]

Well, I have not had the symptoms you have described, such as the abdominal pain and frequent Diarrhea, but I did undergo a colonoscopy 2 months ago and I found out I had Crohn's. I was in denial for about 6 weeks after that, because the only symptoms I have are very painful fissures and a chronic abscess/fistula (and the 4 teeny tiny spots of inflammation they found in my colon), and none of the typical symptoms. None one in my family has any IBD or any AID for that matter.

But I can identify with your emotions. And the exhaustion. I always thought I was just run ragged from being the mother of 2 small children and those 2 other symptoms were a coincidence. But, I too, could sleep all day if I did not have to chase after my 4 year old and 18 month old. After I knew once and for all, it became a bit of a relief just to know why these things were happening (after I just accepted it). I am going to a GI specialist in a few days, and I hope and pray we can pinpoint things and get me into remission and with the appropriate treatment.

I have been brushed aside from 2 other Dr.s as well. They did not know what to do with me, and I live in a very small town, where you have to travel to the next states over to find good treatment and decent Dr.s. SO I took matters into my own hands and referred myself to the Lahey Clinic, which is considered top notch here in New England. I had to wait 7 weeks, and this week is my first appointment. I am so happy that day is approaching, and I am so hopeful I have found a place that will ACTUALLY be of help.

I too, am in pain every day. The pain makes me so tired, worn out, and grouchy. But, despite how awful things have been and how awful I have been treated by past Dr.s, I am hopeful. That is about all I can be at this point...I tried to be positive, but it is difficult.

I wish you all the best. I do hope you are able to get the help you are seeking. Colonoscopy's are such a drag, but in hindsight, I am glad I had one so early in this process. It helped me to remain hopeful, and know that it has not progressed so rapidly yet, and I have caught it so early. I am not wondering how bad things are in my colon, I already know.

Best wishes, and if you have further questions, pop in here from time to time. We could use the support :)

Bops