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Ulcerative Colitis
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Posted 12/8/2009 11:25 PM (GMT 0)
Hi All,

I am brand new to this forum. I have been having stomach problems for years but htey are more like flare ups. I had pelvic pain for over 5 years before having a hysterectomy and discovering I had a painful condition called adenomyosis. I though after my hyster in 2006 my problems were solved. But then I had a severe attack of terrible right side pain and went ti urgent care. Along with the aweful pain I felt the urgent need to have a bowel movement and lots of gas. After a CT scan and some blood work the ruled out appendicits. I had 5 more bouts of this over the last 3 years. I willhave weeks or months where anytime I eat I hear a lot of noise and I get gas and feel the urge to have a bowel movemnet even when I do not need to. Here are some more symtpoms:

~rapid heart beat

~sores in my mouth (like canker sores)

~pulsing cramp-like pain in lower right side (a surgeon told me the tender spot is where my appendix is but it was not my appendix)

~headaches

~nausea

~occasional diahrrea (as in 3 times in the past 6 weeks)

~mucus in stool

~itchy bottom (sorry if too graphic) usually after a bad day of side pain

~fatigue

~tons of gas

Then there are weeks or months that I feel fine. In my quest to fix my stomach issues I have cut out all caffeine, no soda, no fast food, no frozen foods or foods with a lot of perservatives or MSG. I even went on a gluten free diet once but rheumatologist ruled out Celiac disease. I cut out meat at one time, I also went dairy-free for a spell. Now I eat all organic and only meat that is free range; all to no avail as it keeps flaring up.

For years I thought it was my ovary which they left in tact after hysterectomy. So 7 months ago I finally gave into my gyno and took birth control, but now I am having the worst flare up ever. I see the gastroeneterologist next Tuesday.

It's been 6 weeks of sickness. I initially thought I had the stomach flu. It has subsided some but food going in is uncomfortable and food going out is not fun either. Just very uncomfortable inside. 

Any advice? Anyone else have these weird symtpoms?

p.s. for 5 years I had doctor's telling me my pelvic pain was all in my head because they couldn't find anything. I started to think I was crazy. I was vindicated after surgery when they found the problem in my uterus, so now I trust what I feel and know that something is wrong in my body!

 

Posted 12/9/2009 2:54 AM (GMT 0)
I am only guessing, it almost sounds like very server case of Crohn's disease with the entire digestive track and mouth sores. Have you tried taking high doses of vitamin D, like 4000u or more a day. You should look at some kind of anti inflammatory herbs, foods, and maybe Sulfasalazine.
Posted 12/9/2009 3:17 AM (GMT 0)
Zippy,

I am hoping a colonscopy or upper GI will tell me for sure what it is before I start any treatment. I like your thinking with the herbs though. I am a HUGE believer in herbal remedies. I just want a diagnosis first. I am only 36 years old, is stuff like this normal at this age?

Will a colonoscopy tell the doctor if I have Crohn's disease? My primary doctor told me it could be Crohn's disease but she said she was no expert in this area and referred me to the gastroenterologist.
Posted 12/9/2009 4:33 AM (GMT 0)
My doctors did blood tests and stool samples and found nothing, they referred me to a GI. There they did a colonoscopy and an... is it an upper endoscopy? Then after that they did an MRI just to make sure.

Also, birth control pills made things worse for me, you might consider stopping them.
Posted 12/9/2009 2:56 PM (GMT 0)
It sounds as if a colonoscopy and/or upper endoscopy with tissue samples might tell you a lot.

When I was diagnosed with UC (at age 29, as someone else said, most are diagnosed in their 20s and 30s) I have bleeding in my stools, gas and mucus, - and although they are more often associated with Crohn's, I also had big canker sores in my mouth. In fact, I'd been ignoring the bleeding because I was terrified, convinced I had cancer and would be dead in months - and it was the dentist who told me that often sores in the mouth point to a lingering infection or condition, and so I went to the doctor.

The cramps associated with IBD are often so hard to pinpoint because they do feel like "female" cramps. It used to be so hard for me to tell which system was cramping!

Good luck getting it checked out. I hope you can be on the path to taking care of everything soon - sounds as if you're going in the right direction!
Posted 12/9/2009 3:00 PM (GMT 0)
with the rapid heart beat, I had that when I worried about myself cause everytime i got a stomach ache, my mind would race, and start beating fast, then the gas would come..Id say the ones you listed are pretty common ones i get expect the sores in the mouth.

about 2 to 3 times a every 5 weeks i get loose stools, never blood, sometimes rarely mucus.
Posted 12/9/2009 3:07 PM (GMT 0)
You are not alone, it can take years to get a diagnosis of IBD because symptoms can be fleeting or vague. But you will be in good hands once referred to a GI. IBD can be diagnosed at any age; I have a friend who was diagnosed with Crohn's at age 72! But typically the presentation of symptoms occurs by age 50. Your symptoms do sound more like Crohn's but either way your GI will be able to treat what is ailing you.

Sue
Posted 12/9/2009 4:49 PM (GMT 0)

Elephant: Did the colonoscopy tell the doctors anything for you? Were you finally diagnosed?

SongLady: I know what you mean about not being able to tell what system is cramping. I had terribel cramping and pelvic pain starting in 2001. I went through 5 years of doctors telling me it was nothing and probably in my head or depression, even though I had nothing to be depressed about. Then after hyster in 2006 found the adenomyosis. I thought my troubles were over but the past 3 years still have cramping and right side pelvic pain so I thought must be my ovary. Now I am not so sure it is my ovary. I can't wait to see Gastro Dr! The worst part is not knowing and I have been through all of this before when it took 5 years to know I had a painful uterus condition.

Sal2388: Do you think my symptoms are common to Ulcerative Colitis or just vague symptoms in general? I agree, I know part of the rapid heart beat was fear of pain and all the nausea (not wanting to throw up), but I would get so weak and breathless too. I would watch the clock and remind myself that after about 45 minutes it will go away.

SueBear: Thanks for the words of encouragement. I literally can't wait to see the GI Dr! I wish I would have gone last year instead of waiting!

Posted 12/9/2009 5:58 PM (GMT 0)
Nosilla, its hard for me to tell you if your symptons are common to UC, I just joined this site last night and yesterday morning I was diagnosed with Colitis, the doc says its looking like Ulcerative Colitis. I would assume there pretty common symptoms, I myself would always always worry about throwing up, I hate it! I never do, so sometimes if you just relax close your eyes, and take deep breathe it is quite possibly to go away,Thats what I've done for 26 months or so until I was diagnosed yesterday with a colonoscopy. your symptons and what you've been through is much worse than what I have been thru, have you ever had a colonoscopy? I highly recommend it.
Posted 12/9/2009 6:31 PM (GMT 0)

Hi - so sorry you are dealing with this!  Of course only a doctor can tell you if you have UC or another GI type disease.  I can only share experience with UC.  When my UC is active I have anywhere from 3 to 10+ trips to the toilet daily.  Sometimes with diarrhea and sometimes I just pass mucus and blood.  I bleed quite a bit with UC but I know some people do not.  I also have significant urgency to have a BM when my UC is flaring...urgency to the point that I am afraid of having an accident if I don't get to a toilet ASAP.  I do have cramping but mine is mostly left sided or sometime in my lower back (which can mimic menstrual cramps).  My cramps only happen right before or right after a BM though.  I do experience fatigue with UC.  I have never had any upper GI issues (i.e. nausea or throwing up).  I also have not experienced pain or cramps that were not associated with a BM or with passing blood or mucus.  No headaches or rapid heart-rate, but some of that could be stress related for you...it is very stressful when you do not know what is happening with your body.  The colonoscopy should greatly help your doctor to diagnose UC or Crohns...or something else...

 

Posted 12/9/2009 9:12 PM (GMT 0)
I'm sure tests will lead you closer to what's going on...it might not even be an IBD (lots of people can have issues with mouth sores that don't have an IBD due to lack of certain vitamins/minerals) so don't panic...it may be IBS or some gallbladder issue and the mouth sores might just be coinicidence or like I mentioned above lack of vitamins...

:)
Posted 12/9/2009 9:46 PM (GMT 0)
Pill Camera? It really is one of the least invasive dx tools.
Posted 12/9/2009 9:54 PM (GMT 0)

Navy,

What is a pill camera?

Posted 12/10/2009 7:02 AM (GMT 0)
The only problem with using a pill camera....it cannot take biopsies which would be the only way that microscopic colitis could be diagnosed. It mimics UC.

They are a great thing, but again limited.

q
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