New member/New diagnosis/another flare!!!

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New Member

Date Joined Sep 2008
Total Posts : 1
   Posted 9/8/2008 4:49 AM (GMT -6)   
Hello all!

I see that everyone seems to have experienced almost the same things. Well here is a little history sorry if I get a little winded, just trying to find some answers.

I was just diagnosed last month. On my 40th birthday in April I started having more stomach issues, these have actually gone on quite a while, but after being in the hospital many times and many times telling me nothing is wrong. This new doctor I have finally said you have all the symptoms to UC. Put me on Azulfidine 500 mgs. 2x daily for two weeks then 1000 mgs. 2x daily. I started doing much better until the other day then my stomach problems started coming back. Severe pain in my upper left quad down my left side, some chest pain last night and today. Back pain, from what feels like the swelling. I have painful bowel movements with what I call fluffy stool that is sometimes yellow. Lots of mucus stools too. Sometimes that is all that I do. Some of it is blood tinged or seems to be, last month she said that I had a small GI bleed and put me in the hospital, that is kinda how they found it but at my two week check up I still had blood in my stool. (positive Hemocult) Now I just want to crawl in a hole and die. My stomach is having lots of pain, some crampy some just sharp pains. The terrible bowel movements, my whole body hurts when that happens. I haven't had one since about 11pm now and its 6am now. I don't know if I should call my doc or if I should just let the medicine work its course, she really didn't say what to do. Usually by this time I am in the ER, but since I work there I really hate to go in and I have to work tomorrow at 4:30 so I really don't want to go everytime I go I usually get admitted. I hate being sick and I hate being in the hospital, its all getting pretty tiresome you know. How on earth with all those problems do you stay out of the hospital? Am I just being a whimp with the pain? Anyhow, I had a blockage due to adhesions 2 yrs ago, and ever since then I have had these problems with my upper left quad, and only now have they diagnosed UC. I had an upper GI when I was in the hospital 5 wks ago. Maybe my last flare just really never got resolved is what I am kinda thinking. I also wonder if the adhesions may have caused all this, I keep getting a partial blockage but it goes away, they really hate to do anymore surgery on me because I have had so many already.
I have had the following:
appendectomy 1984
c-section 1991
c-section 1989
tubal ligation 1993
donor nephrectomy 1997
lap cholecystectomy/hernia surgery 2003
Hernia repair with mesh 2005/total blockage later had illius
Hernia repair/adhesionlysis 2006

so as you can see I have had some extensive surgery, so therefore they don't want to go in again. I guess I have really had symptoms of UC for a long time like since I was a late teenager. But, these symptoms I have now are closer to the blockage that I had but with constant nausea. Lots of cramping, the pain. It's just awful.
I take the following meds:
112mcg synthroid
40mg protonix, the only med that truly works for my gerd
2000mg of azulfine.
Darvocet for the pain usually once a day

All my labs always come back normal, my body acts as if nothing is wrong but yet I feel miserable. When my gallbladder quit working my labs were perfect no infection and my gallbladder was infected, no idea why that happens, but my doc said my liver enzymes should have been thru the roof, my gallbladder wasn't working except for like 16%.

I know I am bouncing all over the place. Forgive me I am also ADD. So lets recap. I have had 8 surgeries, I am on 4 different meds, I have chronic stomach issues like adhesions and colitis. I have constant pain in my upper left quad, sometimes more sometimes less. Lots of gas some high pitched sounds some gurgles, some very loud deep rumblings. And I feel like I am going to throw up. It used to be sometimes now its all day long. The doctor doesn't want to leave me on the Azulfidine for long because of only having one kidney. Actually when I donated that kidney they said that I had a positive ANA, with Rhumatoid athritis, I have since had two tests that say my ANA is neg. I don't understand that either. University of Baltimore is who ran the first one, and said that I could possibly end up with LUPUS, one day. Maybe I need to check into that further. But anyway, any advise is appreciated. I am looking to feel better and not have the stomach pains anymore. I think once in a while I can deal but this has pretty much been ongoing since April now, I am tired and frustrated and I feel like crap. My bum hurts really bad and I cringe at the thought of needing to use the restroom. I call it the call from you know where. I was in the restroom tonight and someone asked me if I was alright. I lied and said sure. I really am starting to think one day I am gonna die on that toilet. My whole body seems to be involved from the chest to the toes.

Ok, I think I am done going all over the place with this, I hope you can make sense out of this and can help in some way. Oh, and calgal you seem to be very educated. And, I want all you to know I am not a nurse all I do in the ER is register patients. So I see it all but I don't know it all thats for sure.
Thanks for your time.

Forum Moderator

Date Joined Apr 2004
Total Posts : 23551
   Posted 9/8/2008 6:15 AM (GMT -6)   
Hi and welcome :) Wow, what a history you have! For one thing, the rectal pain can be tamed by being placed on a rectal med such as Rowasa or steroid enemas. Many docs don't prescribe these for some reason. Also, if you have cramping you can ask the doc for anti-spasmodics to help relieve that as well as using a heating pad. I personally love a good hot bath but I never seem to get in there because the kids always need something! :) I am not quite sure about being placed on other Uc meds because I don't know the correlation between them and kidney functions but you can always ask the doc to see if you can start on Asacol or Colazal.
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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Elite Member

Date Joined May 2003
Total Posts : 30212
   Posted 9/8/2008 11:28 PM (GMT -6)   
Hi...welcome to the forum! Wow, just a few surgeries under your belt..whew!!

I definitely ditto Sherry regarding rectal meds to help with rectal inflammation (for it will be so no matter how high/extent your UC is and will be the last to heal)

I also ditto Sherry's suggestion for antispasmodics....I use dicyclomine. Still works for me 19+ years.

*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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