Need Help, anyone there?

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abw1001
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 10/5/2008 9:28 PM (GMT -6)   
I was diagnosed with uc proctitis in May, currently on canasa and sulfazine, my symptoms are getting worse. blood and mucus, going to the bathroom up to 7 times a day, and a lot of pain on left side and cramping in lower abdomen. I just switched docs, he did a sig and said that it did not look that bad to him. I am at a loss, just because it does not look that bad does not mean that it does not feel that bad, I do not know what to do, I can't function like this.

abw1001
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 10/5/2008 9:39 PM (GMT -6)   
Also, what is the advantage of being hospitalized with this condition, can they get the symptoms under control quicker? I am up for anythiing at this point. I have been off work for three weeks, andhave not been paid due to the fact that my GI did not think that this qualifies as a disability and refused to fill out my self pay insurance paperwork...I need to get better fast, I need to get back to work.

Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 10/6/2008 2:44 AM (GMT -6)   
I am so sorry for your pain - it's no fun. If I were you I would fire my GI doctor - he has alot of knowledge obviously, but no compassion whatsoever. Let him be the one w/ UC! I am new to this disease as well and have learned alot from this forum. My best advice? Read, read, read and keep on those meds!

Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
 
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/6/2008 8:55 AM (GMT -6)   
Hi ABW,

Welcome to HealingWell. This is a great place to learn about your condition and get feedback from others who understand what you are going through.

Everyone has different thresholds for pain and discomfort. Despite what your doctor says about it not looking bad, if it is causing you that much distress that you are unable to work, maybe you need to get a second (third?) opinion. Find someone who will be willing to treat it more aggressively. I can't say anything about being hospitalized because I've never been for UC, but I would think that is the last alternative.

Are you taking any probiotics? If not, you might want to look into trying some. For most UCers, probiotics provide some relief.

Good luck, and I hope you can get back to work soon. It is no fun being laid up and not working. Time off is supposed to be used for fun stuff, not staring at the walls in your bathroom.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (trying to taper down)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/6/2008 9:24 AM (GMT -6)   
I do my best to stay out of the hospital, because it gives you the opportunity to be exposed to so many resistent bacteria. Generally hospitalization is done only when you're losing a lot of blood or having so much D. that you're becoming dehydrated.

It sounds as if your medication regimen isn't working well for you. One thing you might ask the doctor about is using a mesalamine enema rather than the suppositories. It will reach higher in your colon and may help more. Assuming that you've been taking your meds regularly (a lot of people don't, at least at first) you've given them a fair trial and it's time to try something else. Other oral meds that could be considered are Asacol or Colazal.
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.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


abw1001
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 10/6/2008 12:36 PM (GMT -6)   
Thanks for the support! I just feel so helpless. It is hard to feel this way and try to justify yourself to others who think you are overracting and don't understand how horrible this is. Sometimes I feel like I am being a baby and I should just suck it up, other times I feel like I am going to die, or this is never going to end. I did switch GI's, I see my new doc on Wednesday, and I saw a doc at my family practice today. I don't understand how one doctor can be so sympathetic and understanding, and another be such a jerk, especially someone who deals with these issues daily.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/6/2008 12:52 PM (GMT -6)   
research, research, research! Go in with a plan on how you want to proceed and discuss w/your Dr.. Bring a notebook, print stuff from on-line, make your case.

Dr's are people too and some are jerks, sorry you had a bad experience, not all are like that.

Wish you the best! It is very scary and you can do it!!!! Pred is horrible, but you need to work, ask about that, may help jumpstart your remission.
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07. Close to remission since 9/08.
Prednisone 5mg/2.5mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


abw1001
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 10/6/2008 1:01 PM (GMT -6)   
Did pred last month, NOTHING changed, still all blood and mucus. I will do more research before my visit on Wednesday, but I honestly think there is something else going on, I have a lot of pain on my left side. Thanks for your help, I really appreciate it.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 10/6/2008 3:50 PM (GMT -6)   
     I was hospitalized twice for UC.  First time ten years ago when I was diagnosed and last time this past May for ten days.  My UC is located in the rectum, although my CT scan showed inflammation throughout the colon when I was admitted.   At first I was on a liquid diet in the hospital, but not getting enough nourishment.  They then put in a PIC line and I received my meds through it and they could do the blood draws.
     I'm STILL in this flare and not able to get off the prednisone.  Saw my GI doctor today.  I am tapered to 25 mgm of the pred and he increased the 6MP to 75 mgm.  We'll see how that goes.  I too was told my UC was mild!!! LOL!! Easy for them to say huh?  Prednisone does keep it at bay but it has bad effects on the system.  I have terrible insomnia.  Even the Ambien doesn't work for me anymore.  I also have high blood pressure, which increases with the use of pred and osteoporosis.
     The bleeding stops about the second day I take the prednisone.  Unfortunately, I have only been off pred for a grand total of four weeks out of six months, not consecutive either.  You can see my long list of meds at the end here.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/6/2008 4:38 PM (GMT -6)   
Have you been tested for bacterial infections? Before my UC dx, I had a c diff infection that confounded my doctor for a month. He thought it was either hemorhoids, a delayed negative reaction to Wellbutrin (which I had been taking for years), or something I was eating. I eventually wound up at an urgent care clinic where they got a stool sample and discovered the infection. After that, my doctor at the time was very sympathetic for having totally dropped the ball.

It really is quite terrifying when your body quits working the way you expect it to. It makes it even worse when a doctor with poor bedside manner basically tells you to get over it, it really isn't that bad. Do some research, make a comprehensive list of your symptoms, and then do some more research. Look through past threads, many have great advice on questions and concerns that you should take with you to a doctor appt.

Keep taking your meds regularly. Maintenance meds don't do much good if only taken sporadically. Have you looked into probiotics? Good luck with the new doc on Wednesday.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (trying to taper down)


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 10/6/2008 11:12 PM (GMT -6)   
uhhh have you tried canasa, imuran, lialda, colozal, asocol, or remicade? You could take gas-x and imodium
15yr old male
diagnosed january 04
4pills of lialda a day
canasa
worm therapy every 2 weeks
remicade (taken about 10 times or more)

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