Diagnosed again Monday, still no treatment??

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MommaDi
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Date Joined Aug 2006
Total Posts : 16
   Posted 1/7/2009 1:47 PM (GMT -6)   
smhair   I had my first colonoscopy on Monday, but was diagnosed by a flex sig in 1999 with ulcerative proctitis. Now they are saying I have ulcerative colitis as the inflammation is now in my ascending colon. I'm 'attempting' to use the bathroom about 6-8 times a day - mostly its air/urgency and then mucous and blood.  I don't have the 'diarrhea' that many times per day.  I'm havnig blood & mucous each time I go.  I talked to my Fam Pract dr about my diagnosis from the colonoscopy & she just say to come in next week for a 'long appt' with her.  Shouldn't she just be referring me to GI??  And now???  Shouldn't I be on some medicine for the bleeding?  I had Rowasa back in 1999.  Help!!!  I'm feeling alone here!
 
 

UC_Dad
Regular Member


Date Joined Nov 2008
Total Posts : 33
   Posted 1/7/2009 2:27 PM (GMT -6)   
I am sorry to hear that your doctor only wants to have a "long appt" with you and next week, they seem to not have the same urgency that we have since we are dealing with these issues day and night. I was dx'd in June, but I at least I got a prescription when I left the appt. I have the same issue with the 5-8 "attempts" at a BM. No blood anymore as I starting to get better since 5-8 is down from my once 15-20 "attempts".  Do you know if your insurance will allow you to go directly to a GI in your area or do you need to be referred?
Dx'd June 08 severe UC
30 yrs old
Meds
Asacol 400mg x 9
Prednisone 40mg tapering off now
6-mp 100mg
Canasa
 


UC in Memphis
Regular Member


Date Joined Jan 2009
Total Posts : 67
   Posted 1/7/2009 2:46 PM (GMT -6)   
I was having very similar symptoms as you and I told me PCP that I needed to see him the next day and couldn't wait for an appt at a later date as there was a good amount of blood and pain. He saw me the next morning and then referred me to a GI the following morning. Then the morning after that I had the scopes and meds needed with almost immediate improvements.

UC_Dad brings up a good question on whether or not your insuarnce will allow you to go straight to a specialist.

Sometimes you have to be a little aggressive with the drs regarding appts and such.
Male, 30
Dx: moderate-severe UC 12/08, Lifelong GI issues including an intesusception at age 4
Current meds: Prednisone (20mg), Lialda, Prevacid 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 1/7/2009 2:49 PM (GMT -6)   
That is very annoying. I hate when Doctors take their time referring you to a specialist. Obviously you need to see a GI and the doctor should hurry up and refer you! Best of luck in finding some answers.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


Limeycricketlover
Regular Member


Date Joined Oct 2008
Total Posts : 67
   Posted 1/8/2009 1:29 PM (GMT -6)   
Don't think I'd be happy with the lack of care you're getting - have you at least had some flexi-sigs done between 1999 and now? She should absolutely be referring you straight away, as getting a flare under control seems to be harder the longer it goes on. Don't be afraid to push for a referral and treatment - you deserve to be looked after!
UC - diagnosed Sep 2008 - awaiting colonoscopy (mid Jan 2009) to determine extent
Omeprazole 2 x 20mg
Calcium (Adcal-D3) 1500mg
Mesalazine 8 x 500mg
Mesalazine foam enema
Multivitamins x 3
Pre- & pro- biotic yoghurt


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/8/2009 1:40 PM (GMT -6)   
Do you need a referral, with your insurance? Many do not require it anymore. If not, just make an appointment with a GI yourself! Call around until you find one that will see you now, under the circumstances. No a doctor should not let you continue to bleed and suffer even for a week.
If you need a referral, call back and tell them you insist on it, NOW, that you are very sick.


49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 

Post Edited (Peety) : 1/8/2009 3:43:59 PM (GMT-7)


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 1/8/2009 4:25 PM (GMT -6)   

Totally unacceptable.... it seems that your doctor does not understand UC very well. At the very least the doctor should prescribe enemas until you see a specialist. The bleeding and mucous is not good ( understatement- and could progress rapidly to the bloody diarrhea stage.

 

 


Jackie, 43

Pancolitis, DX October 06

Lexapro, colazal 3x3, Sythroid, Protonix, Flagyl

10 infusions of Remicade- doesn't work
Severely anemic-

back up to 30 mg of pred
Added 6MP- November 25th
 
Surgery almost certain


MommaDi
New Member


Date Joined Aug 2006
Total Posts : 16
   Posted 1/9/2009 9:39 AM (GMT -6)   
Thank you all for your replies.  The surgery report has came back from the colonoscopy & the dr just wrote 'localized colitis in ascending colon - pt to f/u with primary dr'.  DUH!!!  I think these people are a little delayed.  nono Maybe I'm not the wheel that is 'squeaking' very loud????  What the heck is 'localized colitis' - are they saying that yes I have UC...its not Crohn's is it?  The surg report result stated severe chronic active colitis.  It just seems like nobody is really telling me whats going on.  I just wrote my dr that I'd like to go straight to GI.  Since 1999 I haven't had a flex sig or anything.  I was just too afraid to confront this issue.  I was good about controlling the symptoms - but I didn't have as much blood as I'm having now.  EVERY SINGLE BM.  I'm going (or attempting to) about 8 times a day.  Anything that goes in my mouth - i get pain/rumbles/urgency & head for the bathroom.  I'm tired.....just POOPED out! Literally!!!  smhair Not sure if I need a referral but I'm finding out today.  I'm really not wanting to go back on Rowasa suppositories - I remember them from before & they were so gross.  Foul-smell, discharge...yuck!!  Is this my only hope?

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/9/2009 1:42 PM (GMT -6)   
I doubt it is Crohns, that involves the small intestine.
I don't understand, you wrote your doctor? You mean e-mail, I hope? You should be able to call and leave a detailed message/demand, and expect someone to get back to you and get things happening.

Well, it's Friday already. When is your appointment next week?

That blood and urgency is sign of flaring, it sucks. The suppositories or enemas are good because they don't give you the side effects of an oral med, but can reach that area affected. Are they more gross than all that blood? It's really best...
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 


MommaDi
New Member


Date Joined Aug 2006
Total Posts : 16
   Posted 1/12/2009 10:18 PM (GMT -6)   
OK...i just saw my doctor at the evening appt tonight. This is the fam pract dr. Still having all the terrible symptoms. I "go" about 8-10 times a day/bloody/mucous (tissue-looking most times even). Anyway - she called GI - apparently there is a 3-4 wk wait to get in there (figures!) & he (GI) looked at my colonoscopy while talking to my fam pract dr. He said since its in the end of the ascending colon - that he would like a CT scan (barium) (NUM!)...and that he wants me to do Entocort(Sp?) enemas - 1 a day x 4 wks. Hopefully by then I would get in to see him for further treatment plan. He said he thinks its Crohns. I had to do 5 more viles of blood -so now I feel like a slab of meet. So is it crohn's? Is it UC? I had to run to the bathroom at the appt & 'go' mid-appt. How lovely! I'm sorry - I'm just so frustrated, PMS time & confused!!!!!! I'm sooo thankful to have this site though!!! You all are such God-sends!!!!!!!!!!!!!!!!!!!!!!!! Thank you!!!!!!!!!!!!!!!!!

UC in Memphis
Regular Member


Date Joined Jan 2009
Total Posts : 67
   Posted 1/12/2009 10:36 PM (GMT -6)   
bougiebaby said...
OK...i just saw my doctor at the evening appt tonight. This is the fam pract dr. Still having all the terrible symptoms. I "go" about 8-10 times a day/bloody/mucous (tissue-looking most times even). Anyway - she called GI - apparently there is a 3-4 wk wait to get in there (figures!) & he (GI) looked at my colonoscopy while talking to my fam pract dr. He said since its in the end of the ascending colon - that he would like a CT scan (barium) (NUM!)...and that he wants me to do Entocort(Sp?) enemas - 1 a day x 4 wks. Hopefully by then I would get in to see him for further treatment plan. He said he thinks its Crohns. I had to do 5 more viles of blood -so now I feel like a slab of meet. So is it crohn's? Is it UC? I had to run to the bathroom at the appt & 'go' mid-appt. How lovely! I'm sorry - I'm just so frustrated, PMS time & confused!!!!!! I'm sooo thankful to have this site though!!! You all are such God-sends!!!!!!!!!!!!!!!!!!!!!!!! Thank you!!!!!!!!!!!!!!!!!
I can't blame you for your frustration.  Like I have said before on here, I didn't realize how good my doctors are until I read others' stories on here.  Are there any other GI facilites around?  The GI I go to has 10 or so other GI's in the same group/building and my PCP got me into see him ASAP (the next morning, 8am).  The following morning (Christmas Eve!), I was in there for my Cscopy/Endoscopy and got meds that day and had immediate relief.
 
Good luck to you.
Male, 30
Dx:Moderate-severe UC 12/24/08
Lifelong GI issues including an intesusception at age 4
Current meds: Lialda; Prevacid; Prednisone 12/24-01/05 (40mg) 01/06-present (20mg) 
 
Hoping to never have to resort to rectal meds due to traumatic enemas as a child.


MommaDi
New Member


Date Joined Aug 2006
Total Posts : 16
   Posted 1/20/2009 5:41 PM (GMT -6)   
Well my doctor got me in ASAP to the GI dr....guess when my appt is??? MARCH 3RD!!!!!!!!!!!!!! Wow....thats really nice to know. Thats how backed up they are & I'm talking Minneapolis not some little town in the country!!!! Great!!!!!!!!!!!!!!!!! The family pract dr who knows nothing about this disease it seems....had me in her office & waiting while she was paging a GI physician for 'what to put me on for the wait.' Nice! she prescribed Entocort 3 pills a day but a)I have a huge phobia of swallowing pills, and Entocort you cannot crush or split. & b)I'm afraid to take them because they are a steroid & I refuse to be on a steroid. I just really want to talk to the GI physician about this whole thing!! guess - i will....IN MARCH!

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/20/2009 10:55 PM (GMT -6)   
The fact that the GI doesn't have time for you now is a good indication of how the GI will treat you in the future. Maybe it's time to look for someone else on your own.

A similar situation happened to me when I was in my second flare. (My first flare was so short-lived that I didn't even know I had Colitis and didn't see a doctor.)

I saw my PCP. He said my symptoms (blood, diarrhea, blood clots) sounded like Colitis. He referred me to a GI.

Bad mistake. After the initial consultation, they penciled me in for a colonoscopy when I was in no condition to get a conoscopy. Luckily, they did not take the type of coverage I had.

I then tried the clinic I usually go to. They couldn't get me an appointment with a GI for at least a month. It did not matter that by this time I was bedridden.

I then tried the emergency room. They gave me an IV for dehydration and sent me home. Although I was quite anemic, I wasn't anemic enough to be admitted.

I then gave my older daughter the Web site address for my insurance company and asked her to find a GI for me. (I was too sick to call around by then.) Using the insurance company's Web site plus bios and reviews on the Internet, she called around and found a GI for me that would see me right away. I then told my doctor that this was the GI I was going to see and asked him to faxed a referral to that GI.

It turns out I made the right decision. My GI always makes plenty of time for me. He prescribed medicine for me right away when I needed it. I've been told he is very good at giving colonoscopies and doing surgery if needed. My only complaint is that he doesn't know much about alternative treatments, but then that's not where his training lies.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners

Post Edited (subdued) : 1/20/2009 9:58:30 PM (GMT-7)

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