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Did anyone had a hard time proving to the doctors something was WRONG?

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Ulcerative Colitis
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Posted 4/13/2011 9:29 PM (GMT 0)

I started bleeding in the middle of July'10.  This wasn't the first time it has happen.  The first time it happen the bleeding went away quickly, so I thought maybe I strained too much while having a BM.  I thought everything was fine until the middle of last year.  I notice blood and mucus with every bowel movement and I freaked out.  This went on for two weeks.  I called to make a appointment with the dr.  OMG she was looking at me like I was crazy.  She was like you are to young for colon cancer.  Well..that's nice to know.  You probably just tore that tissue or it could be hemroids.  She told me to increase my fiber for constipation.  I know my body and I knew it was more than that.  She finally said she would refer me to a Gasteronologist.  Well, she was about the same as my dr.  I was beginning to think I was crazy.  She acted like why are you here.  I wanted to cry.  She scheduled me for a colonscopy Oct 2010.  Lab result came back and it said I had severe proctitis and she left some polyps.  She wanted to go back to confirm it and remove the polyps because she thought she got them all.  I had a flex sig Dec. 2010 and my rectum looked worse from the first colonoscopy.  All she could say during the exam was impressive.  Look at it.  Well, she did a 360 from my first visit.  She called me personally to see how I was doing.  I changed primary dr.  Although my new one isn't too much better.  She couldn't understand why I was upset because of this disease. She told me aren't you glad it's not colon cancer.   I beginning to think maybe that's how some of them are if they don't consider you to be real sick. 

    The GI doctor put me on Rowasa Jan 2011 for six weeks and then Asacol.  I take 400mg x 4 a day.  She put me on Asacol, because as soon as I stop with the Rowasa the bleeding and mucus came back.  She said she is trying to make sure it doesn't spread and become UC.  I pray it get's better! I've started cramping too.  Maybe it's the Asacol!

Posted 4/13/2011 9:39 PM (GMT 0)
Hi and Welcome!

You can use Rowasa longerm but Asacol is also a good option. I have had doctors not believe me about other things like my fatigue or my asthma but never about my colitis. My GI is extremely aware of the impact UC has on a persons life. She will see me on her day off if I am flared because she knows how difficult it is to deal with colitis.

I am sorry you've had such bad experiences with your GP. I hope you continue to improve. You should see about trying another doctor if the new one doesn't work out.
Posted 4/13/2011 9:58 PM (GMT 0)
Hi, I didn't get that myself about the dr's attitude. My friend said maybe because it's not happening to them. It's like once my Gastro dr realized I had proctitis her attitude changed. I have no idea what was running through their minds. This is all new to me and I'm the only one to have it in my family. I'm glad I found this site, because I needed support. Thanks so much for the response.
Posted 4/13/2011 10:31 PM (GMT 0)
Cee -

I am the only person in my family to have this too. When I was initially diagnosed, I had no idea how severe proctitis could be. I thought I had it easy. Eventually my proctitis flared up really bad and I realized severe proctitis can be just as troublesome as UC. Eventually my proctits spread and now I have pancolitis...

I am happy that your GI is being compasionate now that she sees you really do have a problem. I wish these doctors would take us seriously when we describe our symptoms. We wouldn't make up bloody stool and discomfort. It's not fun to have these symptoms.

Wonderful to have you here on HW :) Ask all your questions, so many users have experience with different treatments, traditional and alternative. I've learned things here that would probably surpass the knowledge of many doctors.
Posted 4/14/2011 2:10 AM (GMT 0)
My first GI only ever looked at my rectum after a year of me complaining about blood and mucous, and then only with a flex sig. So when he diagnosed me with proctitis I didn't understand the implications of the length of the scope. I changed GIs and had a full scope a couple of years later and my new GI said, after I woke up, "there was inflammation in the cecum! Right sided disease!" Like he would have said OMG if he'd been younger and female, LOL. He was so excited. I was very confused, but I caught up pretty fast and understood what I'd been missing for the first four years of my illness.

Sorry you had this experience and I hope you get more effective treatment going forward.
Posted 4/14/2011 2:04 PM (GMT 0)
Such strange experiences. My diagnosis was extremely straightforward. The general doctor, who was not my regular doctor, because mine was off that day, figured the bleeding was either hemmies or colitis, and referred me to a GI. The GI saw no hemmies in a quick exam, and scheduled a colonoscopy. The inflammation was obvious on the colonoscopy.

Are some of you in Britain or Canada? Maybe the doctors are slow to order up the right tests because the national health system criteria are strict? If you're in the U.S. and have decent insurance, they're happy to order up any and every test. If you're uninsured, of course, it's a different story entirely ...

All that said, my co-pays on the colonoscopy and lab work still ended up being in the $200 range. And then there's the $40 I pay in total each month for the Asacol and Canasa. Much better than the sticker price, though, which would be close to $900.
Posted 4/14/2011 4:26 PM (GMT 0)
@DaviSD Strange experiences is right. I'm from the US and I don't know why they didn't think it could have been something beside hemroids. I couldn't understand it myself. I am from a small town, but that shouldn't matter. I guess their only thought was it can't be Colon Cancer. As for me my insurance paid everything except $1,200 for the Colonoscopy and $350 for the flex sig. I pay $30 each month for the Asacol.

Post Edited (Cee7Jay1) : 4/14/2011 10:29:30 AM (GMT-6)

Posted 4/14/2011 4:36 PM (GMT 0)
@Kazbern
Thanks for sharing your experience with me. I felt like the dr.s didn't believe me until they saw something was wrong. I was already emotional, because I was scared. Immediately you think do I have "Cancer". I was just wondering had anyone else experience this.
Posted 4/14/2011 10:20 PM (GMT 0)
Cee7Jay1:

I can totally relate to your experience.  The only difference was that I was seeing a very well respected GI doc who didn't think my colitis was that bad at all.  I kept bleeding, cramping and having accidents.  I had mucus, urgency, etc... I had 3-4 colonscopies with this guy and he kept telling me that my case was mild.  My colitis spread like wild fire and eventually I wound up with pancolitis.  He had me just on Asacol and never once, I repeat never, mentioned rectal meds.  I eventually had to go on Imuran and things settled down.  I had to switch GI docs, it took me about 4 different ones to find one that was talented medically as he was personally. 

I still remember my old crap GI doc who always had a dead pan face when telling me my case was mild even though all the while I was bleeding like a stuck pig.  My hemoglobin dropped to 8 (normal 14-18).    He was an ass.   So yeah I can sympathize with you when your doc says all is right when there is a lot wrong.

I am glad you found someone who cares.

MyUC

Posted 4/15/2011 6:04 AM (GMT 0)
With my experience, once I was sent from urgent care to the ER I was hospitalized and all tests were done at the hospital. I do like my GP but I did switch my GI as I felt he was not taking care of me properly. Keep changing your doctor until you find one you like. We all deserve proper care. Yes, I was afraid therefore I put off telling anyone I was suffering for months with bleeding, mucus and D. I was even having dizzy spells and still wouldn’t tell anyone. It wasn’t until I could no longer deal with the feeling of poison in my stomach was extremely weak that I decided I needed medical help. I was in denial and was worried it was cancer. It was a huge relief to know it was not. I cried when I was told UC was not curable but then I thought at least it’s not cancer.

I will learn how to live with it and not let it run my life, however it’s a constant fight between me and my UC. I will get out of this flare and take control very soon, I hope.

Hang in there. We all know how tough it is. Try to stay positive :)
Posted 4/15/2011 9:34 AM (GMT 0)
I had a very different experience. My GI was in a panic the first time I saw him. At the time, I was severely dehydrated, very anemic, peeing blood out my butt, and passing a ton of blood clots. But what he was really worried about was that my colon felt like dog meat when he did an external exam. In other words, I most likely had toxic megacolon. I had just been to the emergency room the day before (they couldn't admit me without a diagnosis); so he gave me meds and told me to go back to the emergency room if I got even the tiniest bit worse.

I read that proctitis could be due to a sexually transmitted infection. Have you been tested?
Posted 4/15/2011 3:03 PM (GMT 0)
Subdued, Yes I have been tested and no I don't have any sexually transmitted disease. I don't know how it happened.
Posted 4/15/2011 3:33 PM (GMT 0)
Netty13,
I know exactly how you feel.  I was being so naive, because I didn't know anyone who had it.  I thought I would just go to the doctor & gastero and boom it would be over with. :-)   I didn't know it's no cure for it.  That was a hard pill to swallow.  Then the gastero telling me she is trying to make sure it doesn't spread to the rest of my colon.  I was like what!!! I'm like you, atleast it's not cancer!  Thanks for the response!
Posted 4/15/2011 5:52 PM (GMT 0)
prior to being dx'd w/UC my primary who I 'fired' told me I was having bloody bm's from eating WOW brand potato chips. I explained my Mom had UC as well so I think it was more than from eating those chips once.

Then I was told I had to wait 3 months to see the GI, by that time I was pooping toilet bowls full of blood. I called them and said that by that time I would probably be dead from all the blood loss. They got me in the next day and the Dr. I saw then gave me a pamphlet and sent me on my way w/some scripts.

I also have kidney disease and it took 7 YEARS to get diagnosed. I had swollen ankles and every Dr. I went to tried a ton of different tests, one Dr. told me it was my shoes that were causing it. Finally the GI I have now sent me to get a urinalysis and turns out it was a side effect from the 5ASA's I had been on for 7 YEARS!!

Be your own advocate, it's so hard not knowing so many things. Change Dr's until you find one that works for you!!
Posted 4/15/2011 7:27 PM (GMT 0)
I had to go through three primary care doctors before one finally took me seriously. The first told me I had an anal fissure and to take stool softeners; the second told me I had the "stomach flu." The third finally took me seriously and ran test after test until we found out what was wrong. Hang in there. It can be hard to find a good doctor, but they are out there.
Posted 4/15/2011 10:10 PM (GMT 0)

Cee7Jay1 said...
Subdued, Yes I have been tested and no I don't have any sexually transmitted disease. I don't know how it happened.

I don't know much about proctitis. My first flare sounded like yours. Just some bleeding that went away on its own. I didn't even go to the doctor, thinking that it was hemorrhoids. I didn't know such a thing as IBD existed. I did know about hemorrhoids because my ex had them.

My flares usually start in the rectum, and I've had mini flares in which only the rectum was involved. So I'm not sure how to tell if you could in fact have UC. That's why I asked whether or not you've been tested for an STD. If you had an STD, then chances would be higher that you have proctitis, not UC.

Don't feel bad about how your primary physician treated you. Regular doctors are accustomed to treating runny noses, infections, ... , not IBD. And don't feel bad that your GI didn't take you seriously at first. They are dealing with some patients who are bleeding, in serious condition, on very strong meds, and the meds aren't working.

Start keeping a food journal and eliminate any foods/ingredients/beverages that bother your digestive system.

Start taking probiotics.

Some people, like me, find that spinach, foods with turmeric/curry, and ginger teas help.

Make sure you use rectal suppositories. Your inflammation is in the rectum, not the rest of your colon. Rectal meds are better at targeting inflammation in the rectum.

You don't want to end up having your GI be very concerned about your condition. By then, you will have to be on some very strong meds. They have some very bad side effects.

Post Edited (subdued) : 4/15/2011 4:29:07 PM (GMT-6)

Posted 4/16/2011 6:25 AM (GMT 0)
I was already in the hospital when large 3 and 4 oz blood gushers started coming out of me. Nurse called both gi and surgeon who said don't worry, just normal morphology. Nurse fought like heck and wouldn't give up until she got the head colorectal surgeon to take a look. I had gone toxic and had an immediate full colectomy. Too soon to feel much more more than emotional shock. Thank god for that nurse. I owe her my life.
Posted 4/16/2011 7:06 AM (GMT 0)
Cee - I did not know anyone with UC and never heard of it before. I'm glad I found this place. You're welcome :)


Subzero - That's aweful but I'm glad that nurse fought for you :)
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