New here~ new diagnosis~ bleeding for 14 months

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Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 9/25/2008 12:20 PM (GMT -6)   
Hi all. I am newly diagnosed with Crohn's/UC. I am actually still in the diagnosing stage I think.  I started bleeding in June/July 2007. I had a colonoscopy done in Aug, which came back fine so they told me that it probably was internal hemmorhoids.  They never saw any though.  In Feb/March of this year the bleeding began to really increase, with tons of mucous and bloating. The doctor visits always ended with, well these are hemmorhoids, good scope, ect. I even saw a surgeon about these "hemmorhoids", and the surgeon said that although he couldn't see them he never saw so much blood before and it was obviously hemmorhoids.  He opted that I wait until I was anemic until I did surgery.
 
In August I began to bleed heavily, much worse than a menstrual cycle. I called the doctor and pretty much begged them to give me another scope. He actually told me that with my good scope last year he wouldn't do another on me for 5 years.  I kept telling him something was not right.  They did a sigmoidscope that week and could only check a few centimeters because the ulceration was so severe.
 
I am actually with a new doctor now. The biopsies came back as UC/Crohn's. I am not sure why they named them both. I am having an endoscopy done next week, as well as another colonscopy. They are looking to see how far the disease is.
 
I have had non stop pain in my stomach since August. I am hoping it has to do with the steroids. I am scared to eat because the pain and bloating gets worse after I eat for about 4-5 hours.
 
As far as tests they gave me a CT test with contrast and barium. I am not sure what the CT test would show as far as this disease goes. They said it looked positive.
 
I also did the breathe test looking for bacteria, which was negative.
 
I am down to 30 prednisone a day now, but noticed I am having more bm's now.
 
I am a little confused, discouraged, the pain really can get me down.
 
Sometimes I take benedryl to help me to sleep at night.  Other than that I am on Lialda. I was on suppositories, but they said I could probably stop them.
 
So there is my story. Thank you everyone who has posted here and shared your stories. I am trying to educate myself, and it helps to see other people have lives with this.

Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 9/25/2008 2:00 PM (GMT -6)   
Hi Sunshineonmyface!

Welcome to the forum! Sorry we had to meet under these conditions. I just want to say hi and that I'm sorry you've been suffering for SO long and had such terrible care by your first doctor. I don't understand how a GI could miss something like that, but I'm glad to hear you're with a new doc.

This disease is definitely frustrating and there is much to learn about it, so ask as many questions as you can. This forum is a great resource for information and support. We're here for you and ready to help. :-)
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis
Current Treament:  Asacol 1200 MG 3X daily, Cortenama 100 ML nightly, Iron 325 MG 3X daily, Zoloft 50 MG daily, Bentyl 20 MG and Tylenol (as needed).
Diet/Exercise:  Avoiding trigger foods, eating very healthy.  Yoga or walking, when possible.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa.
Status:  Flare
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 9/25/2008 2:20 PM (GMT -6)   
Hi Sunshine and welcome,
     I've had ulcerative proctitis for ten years.  My last flare started in April of this year and I am still flaring.  Oh, I've had some good days but few and far between.  I was hospitalized for ten days in May.  The worse thing is, I believe I am now prednisone dependant.  The doctors had me on 40 mgm IV in the hospital and when I got home had a slooooow taper.  Finally got off the pred but short lived in August, maybe a week and a half.  Another thing....I never stopped bleeding either.  Some days I bleed worse than others.  Went back on the pred in late August, slow taper again.  This time off it for two weeks and now my symptoms are back with a vengence.  Today my GI doctor put me back on 40 mgm again.  I hate this as I have high blood pressure and my blood pressure skyrockets on prednisone.  Called the heart doctor today and in addition to my two blood pressure meds he prescribed a diuretic.
     My present meds are, in addition to the pred.,  9 Colazal a day, 50 mgm of 6MP, Cort enemas alternate nights with Canasa suppositories.   I also take a probiotic, multivitamin (today started one with iron because of the bleeding), flaxseed oil capsule, calcium.....plus the blood pressure meds.  Oh, and because the prednisone plays havoc with the upper intestinal tract...doc prescribed Nexium.  Oh joy!  I have to actually write down my meds for fear of missing one or taking too much of another.
     I don't know what was the matter with the first GI you saw, but I would classify him/her as being pretty much incompetent.  Reminds me of the first GI I saw.  Ten years ago, before being diagnosed, I was really in bad shape.  I had lost 15 lbs in less than a month, everything I ate came right out of me and I was bleeding profusely from the rectum.  He did a sigmoidoscope in his office and said eveything looked OK!!  That night my husband had to take me to the ER and I remained in the hospital eight days.  Thank God I was seen by a competent GI when in the hospital!  Sorry this is so lengthy.  Good luck and you will get a lot of advice from this forum.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/25/2008 2:46 PM (GMT -6)   
Welcome to HealingWell, Sunshine. It sounds as if they haven't decided yet whether you have UC or Crohn's disease. This can be difficult sometimes because the two conditions can resemble one another. The primary differences is that UC only involves the inner lining of the colon, while Crohn's can involve the entire intestinal wall. Also, UC is limited to the colon while Crohn's can affect anywhere in the GI trace from mouth to anus.

It's important to educate yourself so you can be a partner in your own care. There are some great links in the "UC resources" thread here, and the last link in the thread is to a site with a great explanation of UC and Crohn's.

Once again, I'm sorry you needed to find us, but so glad you have. You'll find a lot of information and ideas here.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 9/25/2008 8:55 PM (GMT -6)   
Thank you for the welcome. It really caused me a lot of sadness that they misdiagnosed me for so long. They even wrote in my charts that "woman is paranoid over her hem bleeding." It is frustrating, but I am trying to let it go because it only hurts me to be upset over it.

My steroid treatment seems different than other people here too. They had me on 40 for 2 weeks, then 30 for 2 weeks, 20 for 2 weeks 10 2 weeks then I don't know from there. I am on 30 right now.

I was on 4 Lialda, but he said take 3 to 4 a day so I went down to 3.
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