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Ulcerative Colitis
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Posted 11/7/2007 11:20 PM (GMT 0)
Hi I am new to this board and I am just looking for a little support or answers.  I have been battling painful loose BMs with bleeding for over 5 years.  Three years ago I was diagnosed with Celiac disease via a small intestine biopsy.  I was told the bleeding was caused by fissures (which I certainly have).  I have been a gluten free and lactose free diet ever since and I have seen only seen moderate improvement with bms.  On average I go 3-5 times typically only in the morning (though I do on ocassion have issues in the afternoon and middle of night).  I have bleeding with mucous probably 40% of the time.  I know some of the bleeding can be fissures but sometimes my fissures are not causing problems (ie pain) and I have a lot of blood coming from somewhere else.  Always bright red in color.  My first 2-3 bowel movements are typically loose and then I sometimes get awful cramping and tenesmus.  It gets so bad sometimes that I literally crawl to the bath tub and get myself in hot water to ease my shaking.  I also run temps from time to time when this is going on.  Now, I keep going to this GI (who I don't like that much...gotta love HMO) but he keeps telling me I have IBS or it has something to do with my reproductive system (endometriosis).  The IBS answer frustrates me b/c growing up I had alot of stomach issues and the Dr. told me it was IBS...turns out it was celiac disease.  Now another Dr. is giving me the same old story.  The issues seem to be getting worse and my job is being impacted b/c I can't get there on time half of the time because I am stuck in the bathroom.  Then sometimes when I get there I spend another half hour hiding out in the bathroom at work.  I was at the dr today and he is scheduling me for a colonoscopy but only to ease the mind of my GYN who recommended that I have one performed.  From what I am reading it sounds like I may very well have UC.  I know my symptoms may not be that severe but does that mean it should be ruled out?  At this point I just want someone to figure it out and help me get my life back.  UGGGHH         
Posted 11/8/2007 1:29 AM (GMT 0)
Where are you located? It sounds like you need to consult a more experienced gastroenterologist. You can try looking at the Physician Finder section on ccfa.org Website if you're in the U.S. It does seem that you could have UC from the symptoms you describe. Take care & good luck in getting the help you need to get out of the bathroom blues. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)
Posted 11/8/2007 1:34 AM (GMT 0)
Oh, you definately need to find a 2nd opinoin. I just don't trust doctors. My first doc said I had hemmerhoids....4 months later finally went to a differnt doc and I was diagnosed immediately iwth UC. I hope you don't have it and that it is only IBS, but it is best to rule out UC or Crohns.

Good luck and keep us posted.
Posted 11/8/2007 2:21 AM (GMT 0)
I would recommend finding a GI who is associated with one of these hospitals
http://health.usnews.com/usnews/health/best-hospitals/search.php?spec=ihqgast&
They are the top GI hospitals in the country, many of the GI associated with them are the best in their areas. Finding the right GI makes all the difference in treating an IBD... you and your GI have to work together as a team.

--Keith
Posted 11/8/2007 3:49 AM (GMT 0)
Sounds as if you're at least started in the right direction by getting that colonoscopy scheduled. Congratulations on that victory! In addition to visualizing the colon, they should be taking biopsies also during the procedure.

I assume your doctor access is limited because of the HMO? But there still should be a provision for a second opinion. If you aren't happy with what happens after the C-scope, look at your policy or ask about the appeal process. I think they're required to have one. My experience with HMO's is that most of them can provide decent care, but often you have to fight for it. The next time you have a chance, you may want to consider what other plans (if any) are offered by your employer.

Good luck, and I hope you get some answers soon.
Posted 11/8/2007 4:23 PM (GMT 0)
Here's a question that I hope is helpful and not worrisome... Do you trust this GI (whom you don't like and who doesn't sound like he's addressing all your concerns) to do a good job on the colonoscopy? I'm worried by the fact that it was your GYN who suggested the colonoscopy. Most GIs want to find the root cause of your symptoms and a c-scope is the first step toward that.

I agree with the advice above to try one of the top-rated hospitals and find a GI associated with one of those. If the HMO is not going to cover out-of-network charges at all, perhaps you can find a good doctor with a sliding scale? OR, is there any chance that you could make a case to your employer that in order to improve your attendance and focus you must get better and their health plan falls short of that? Perhaps they could find you some supplemental insurance? (I don't know anything about that. Just an idea.)

It sounds like you've been dealing with symptoms for a long time and I'm glad you posted here. Dealing with getting good treatment can take so much energy. Maybe you could take a short medical leave from work to take the time to see a new doctor and have him/her do a c-scope? Sometimes a week or two away from work on a new treatment can make a big difference. I'm a big fan of sleep and rest. :)

Keep us posted. If you don't mind telling us the area where you live, maybe someone has a GI recommendation.
Posted 11/9/2007 2:03 AM (GMT 0)
Thank you for all the advice :-) .  I live in PA and have been searching for a good GI.  I am hoping to find one in network that my primary care would be willing to give a refferal to.  I am nervous about this doc doing the colononscopy, more or less worried that he will not do a thorough job.  Part of me wants to run for the hills and the other part of me wants to let him do the colonoscopy, get the results, and then run for the hills.  I just find it very frustrating that he seems to be dismissing the fact that I am bleeding and having a lot of pain.  A decent Dr. should want to try and figure out what is causing it.  I just want to know what is wrong so I can get it taken care of properly.  It shouldn't be so hard.       
Posted 11/9/2007 3:29 AM (GMT 0)
What area of PA? If you are in the North Eastern PA definitely go to NYC for a GI.... I have an HMO too but I choose to pay out of pocket to see a GI that does not take insurance. The level of care is completely different than any GI that I have every seen who takes insurance. My GI will spend 30+ minutes with me if necessary and is extremely thorough with me and explains everything to me.

There also some great GIs in Philly.

--Keith
Posted 11/9/2007 12:51 PM (GMT 0)
The first doctor I went to said it was my gal bladder after I told him my symptoms- was setting me up for surgery - the whole nine yards -

I freaked out - got second opion - the read the ultrasound that was later done - said nothing wrong with gal -bladder.

I would run for the hills if you are not trusting him.

My mom told me the other day to remember that the doctors are practicing medicine on us - they use their best judgment - I personally think some should not be doctors,

BTW I still have my gal - bladder and was told by two different docs it looks great and there is nothing wrong with it :)
Posted 11/9/2007 5:09 PM (GMT 0)
I just got in touch with my primary care and she is referring me to a new GI.  I told her about the visit from the other day and one a few months back where he told me to eat fiber one cereal (which is wheat....a major no no for Celiacs...good thing I knew that).  She nearly hit the roof so she is sending me to a new practice.  I hope this one turns out better.  It will probably be a while for me to get in to see them but I think that is better than letting this clown do a bad job on a colonoscopy.  As much as I want to get this taken care of swiftly I think it is important that it is taken care of correctly.  I have been dealing with this for over 5 years...what is another month or two eyes
Posted 11/9/2007 7:08 PM (GMT 0)
Make sure that you tell the new GI's office that you are flaring and they will probably get you in to see the GI sooner than an average patient who is trying to get a c-scope.

--Keith
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