diagnosed last week

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UP09
Regular Member


Date Joined Feb 2009
Total Posts : 22
   Posted 2/20/2009 12:41 AM (GMT -6)   
I didn't have a clue about what was causing bleeding + mucous. Misdiagnosed july 08 with bleeding hemorrhoids. How common is this misdiagnosis? Diagnosed with ulcerated proctitis 02/09/09. Does it always progress and get worse? Now taking azathioprine and mesalamine. Would fatigue be a symptom of the meds this soon after starting them or maybe it's the emotional aspect of dealing with a chronic condition.

Learntoadapt
New Member


Date Joined Feb 2009
Total Posts : 19
   Posted 2/20/2009 1:22 AM (GMT -6)   
I had crazy fatigue after being placed on Colazal. I was an active triathlete before being diagnosed so I only attribute the fatigue to the meds. I was so exhausted but I could not sleep, yet I could not get out of bed. The fatigue wore off after about a month. Like you, I'm still figuring this disease out (diagnosed 8/08). I thought I read that the disease spreads in about 1/3 of the cases (don't quote me). The shock of the disease is now subsiding and now I am in the "learning how to manage" phase. It is nice to read others experiences.
Diagnosed with Proctitis in 8/08 with additional inflammation by the appendix (whatever that means, sounds like it is more than proctitis)

Colazal 3x3
probiotic
fish oil
multi-vitamin
SCD since 9/08


spluxa
Regular Member


Date Joined Nov 2008
Total Posts : 183
   Posted 2/20/2009 8:52 AM (GMT -6)   
I’ve gone three times to my old GI with complains of bleeding and mucous and other UC symptoms, and he’s been telling me "don't worry, it's just a hemorrhoids" for 6 month, then I switched my GI and was diagnosed with UC immediately, even without colonoscopy! I was just wandering, how is it possible to confuse these two. Now, knowing better about UC, I know that symptoms are different!!!! Big Time!!! Don't you have to know that if you GI? nono
Diagnosed with left-sided UC on Sept 08 Colazal 5x2day, Lialda 2 per day (so unusual to take just 2 pills)
Canasa 1 supp. every nigh Cortifoam 1 at night
Vitamins: Zinc, B complex, Fleexsead Oil capsules, Multi. Digestive Enzymes (helps a lot)
***I'm not sick with UC, it's UC sick with me!***






Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/20/2009 8:54 AM (GMT -6)   
Whoa! Why did your doc put you on AZA already??? This is an immune suppressing medication and usually reserved when other conventional Uc meds fail. Have you ever given rectal meds a try yet?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Mamas Boys
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Date Joined Oct 2005
Total Posts : 1460
   Posted 2/20/2009 9:02 AM (GMT -6)   
My thoughts exactly Red!

Hi UP - welcome to the forum. First of all - misdiagnosis is very common - especially if the symptoms are just bleeding with nothing else. I always thought I just had bad hemmies related to my pregnancies. In hindsight - it was the start of something else altogether. Fatigue is also a common symptom while flaring - and is defninitely a side effect of the azathioprine. Taking that at night should help somewhat - but I do find that I still don't have the same energy levels I used to.

One question - why did the doctor put you on azathioprine right away? Normal first line meds are oral mesalamine (like Asacol, Colazal, Pentasa) and mesalamine enemas/suppositories (Rowasa/Canasa).
Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


UC_Dad
Regular Member


Date Joined Nov 2008
Total Posts : 33
   Posted 2/20/2009 10:23 AM (GMT -6)   

Hey UP,

Mis Dx'ing is common as others have said, especially when symptoms are mild. As "Learningtoadapt" name implies you will get better and coping and dealing with UP over time. I am a little shocked though that your doc prescribed azathioprine already, I worked my way up after dealing with constant flare and once I found I could not taper off Pred without symptoms coming back.


Dx'd June 08 severe UC
30 yrs old
Meds
Asacol 400mg x 9
Prednisone 40mg tapering off now
6-mp 100mg
Canasa
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/20/2009 3:15 PM (GMT -6)   
     Mucus was the first thing I noticed ten years ago when my symptoms started, then the diarrhea, bleeding, etc.  However, the UC was diagnosed through a colonoscopy.  How does the doctor know for sure it is UC and not Crohn's?  My friend had Crohn's and except for the bleeding, which she didn't have, all the other symptoms were the same as mine.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


UP09
Regular Member


Date Joined Feb 2009
Total Posts : 22
   Posted 2/20/2009 8:42 PM (GMT -6)   
Thanks to everyone who gave me some feedback. Yesterday I was feeling almost "normal" again & today I can barely do anything - my brain feels like it is full of cotton candy. The diagnosis was made during a colonoscopy, moderate to severe ulcerative proctitis & the mesalamine is an enema. The doc said that he prescribed the meds to get it into remission more quickly. I wondered about it, but just after the procedure I didn't have much info about anything. It's only after the fact that I started putting 2 + 2 together about other symptoms that were already present. Had digestive troubles (often just an uncomfortable full feeling disproportionate to the amount eaten)in '07 & at the same time had a gall bladder attack - that was resolved with surgery - but was on an almost no fat diet for a month prior to surgery, which also relieved the digestive issue. Felt really good for almost a year and then last summer the uncomfortable feeling + blood + mucous, and to top it all off I had canker sores one after another (1 or more at a time) during the same time frame. So maybe this has been going on for a couple of years. Had a routine colonoscopy (the over 50 initiation into the world of gastrointestinal procedures) less than 5 yrs ago - no problems at that time. I guess I shouldn't complain too loudly, since some of you have been dealing with this for a long time and with far worse symptoms. But at this point the meds are making me feel worse than the disease.

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/21/2009 9:01 AM (GMT -6)   
First, I would question your doctor about the Aza. This can cause intense fatigue and personally I don't see why he would be so aggressive with your treatment right away. Aza, aka Imuran, suppresses the entire immune system in your body and you need to go in frequently for blood testing to check for liver toxicity. And because it starts to lower your immune system, it can cause fatigue, nausea, and headaches until your body gets used to it.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/21/2009 11:35 AM (GMT -6)   
"But at this point the meds are making me feel worse than the disease."
 
I sure know how that feels.  I have quite a few weeks to convince my doctor of that!  Finally, he agreed that mesalamines were out for me.  I felt like I had the flu - didn't want to get out of bed - worse than UC ever was.  I will not take mesalamines again.  That limits the options - especially the ones safer for us.  I had to go on prednisone to stop the bleeding, etc.  Probably going to try immune suppressants next.  We are all different but I refused to use medications very long that made me so sick.  It was not like a couple weeks of sick and then better - it was gradually getting worse - every day!  I gave them a fair time.
ElaineNY
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 2/21/2009 11:49 AM (GMT -6)   
I'm sorry to hear you got UC. I agree that I don't see why your doctor put you on the azathioprine already.

Misdiagnosis is very common. I went to three different doctors before one finally realized I didn't just have an anal fissure (as the first doctor told me) or the "stomach flu" (as the second doctor told me, even though I insisted I knew I did not just have the flu). It was all very frustrating. I had lots of bloodwork done, x-rays, a CT scan and finally a colonoscopy before they diagnosed me. I was put on Asacol initially. Now I take Asacol and Rowasa enemas.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen


Joma
Regular Member


Date Joined Nov 2008
Total Posts : 222
   Posted 2/21/2009 11:56 AM (GMT -6)   
i have to agree with what others are saying about the aza you are on. you definately want to work up to the immune suppressing drugs as the side effects can be signficant. the short term effects have been outlined but it is the longer term effects of these drugs that are in a bit more question (ie. do they set you up for higher risk of cancer etc.) personally i have always choosen the least invasive type of medicinal therapy possible - often stubbornly against my docs wishes. i had to finally admitt this year that the mesalamine in all its forms was no longer working for me after having a crazy flare and so i have moved on VERY RELUCTANTLY to steroids - i konw i have been one of the lucky ones who has responded well to most meds - my flares are nasty but they can be well controlled so far. i have had uc for going on 10 years and during that time i have had a number of docs as well and therefore have had many differing opinions on how to treat my illness. i would urge you to become an expert about your particular disease, namely how uc effects you in particular and what drugs/lifestyle changes work for you - everyone is different. also, really educate yourself about all the drug options and decide what you are willing to do and what you will reserve for later. finally, i think that some natural meds help me and that too has been an exploration - one that traditional medicine cannot help you with. good luck and chin up. jo

UP09
Regular Member


Date Joined Feb 2009
Total Posts : 22
   Posted 2/21/2009 12:19 PM (GMT -6)   
I tried to contact the doc yesterday, about the meds, but they didn't return my call. I never have been interested in using pharmiceudicals whenever I can avoid them, but then I have never had a chronic condition before.
Not to be facitious (Ha ha) - after seeing how little the insurance paid the doctor, he may figure it isn't in his economic interest to retain me as a patient.
Does anyone know if there is research about preventing this condition, so that we can advise our kids about what they might do as prevention?

Joma
Regular Member


Date Joined Nov 2008
Total Posts : 222
   Posted 2/21/2009 12:28 PM (GMT -6)   
at this point there is little uderstanding of what causes uc and so there is even less understanding of how to prevent it. sorry for the bad news about that. one bit of good news is that if only one parent has uc, their children only have a 15% chance of having uc as well - pretty low. jo

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/21/2009 7:37 PM (GMT -6)   
I would definitely keep trying to reach the doctor after the weekend to see about switching the meds. Ask for oral mesalmine (like Asacol, Colazal, Solafolk, etc) in addition to your enemas. Definitely better to start out small and work your way up to the heavy hitter drugs if that becomes necessary.
Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


UP09
Regular Member


Date Joined Feb 2009
Total Posts : 22
   Posted 3/1/2009 12:31 AM (GMT -6)   
The doc never did reply - I even tried snail mail- gave him my phone#, email, P.O address - nothing in reply. So I quit taking the azathioprine in the a.m. - feel much better now - not half asleep and fuzzy headed all day. So at least I'm getting 1/2 the former dose. I sure don't feel very confident about going to a doc who won't reply, not even through his nurse. Don't have many options though because of the insurance.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/1/2009 12:46 AM (GMT -6)   
UP, sounds to me like you need a new GI. Not returning calls is unacceptable and in some cases it could be dangerous.
Judy
 
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.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


UP09
Regular Member


Date Joined Feb 2009
Total Posts : 22
   Posted 3/1/2009 12:55 AM (GMT -6)   
My only medical option for now is to use the emergency room if I get sicker. I have a routine appointment to see a nurse practitioner in 2 weeks - will ask about blood tests, etc & about possibility of referral to a different GI. My bleeding has mostly stopped for now, but just started to get a bit of mucous again.
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