Doctor says it like pulling teeth???!

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WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 1/24/2009 8:31 AM (GMT -6)   
I got released yesterday from the hospital on 40mgs of prednisone, 50mgs of 6MP, and 12 asacol pills. NO RECTAL MEDS. Which I find strange. Anyway, I was told that my proctitis has moved into my sigmoid and I have Proctosigmoiditis. I just spoke to the on-call Doctor because my pain is still pretty bad and I have been trying not to take the percecet. Anyway I said what is the difference between Proctosigmoiditis and left-sided colitis....and he said it's basically like pulling teeth. Anytime the disease spreads past the rectum it is considered left-sided colitis. But when I read...
 
it clearly states there is a difference.
 
Anyway, I am pretty miserable and sad right now. And the ladies out there who know I have been ttc (trying to conceive) know that this has def. put my baby plans on hold....
 
Any advice? I am just surprised that it spread. I guess I always thought I would just have proctitis. My last scope was in October.
severe ulcerative proctitis - march 05 diagnosed
proctosigmoiditis - january 09 diagnosed
hospitalized - 3/08 for 6 days of IV steriods
hospitalized - 1/09 for 5 days of IV steriods / put on 6MP (50 mgs)
past meds: colozol, sulfasalzine, hydrocortisone enemas, canasa and prednisone 
current meds: asacol - 12 pills, 4 pills x3, nightly rowasa enema, Primal Defense Ultra Probiotic, fish oil, calcium w/ vitamin d 2x a day, prenatal vitamin & extra vitamin c and b12
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/24/2009 8:56 AM (GMT -6)   

Wishful - I am truly sorry for what you are going through.  I feel you will get that baby you want - patience!

Anyway, your link did not work for me but I found this info on same website....

 

  • Proctosigmoiditis: Colitis affecting the rectum and the sigmoid colon (the lower segment of colon located right above the rectum). Symptoms include bloody diarrhea, cramps, and tenesmus. Moderate pain on the lower left side of the abdomen may occur in active disease.

  • Left-sided colitis: Continuous inflammation that begins at the rectum and extends as far as the splenic flexure (a bend in the colon, near the spleen). Symptoms include loss of appetite, weight loss, diarrhea, severe pain on the left side of the abdomen, and bleeding.
  • My doctor referred to mine as left-sided after first scope in May - I had no loss of appetite/weight loss or severe pain.  I definitely had the symptoms of proctosigmoiditis.  That is what he called it in November scope report - "confined to rectum".  However, I still have bleeding and slight "discomfort" left side - definitely tenesmus at times - maybe once a week.  I cannot take 5 ASA medications so trying the steroid enemas right now.  Seems you should be on rectal medication of some kind.  I have used the enemas for a week - no significant change but can take longer so trying to be "patient"!!

    Good luck to you - ElaineNY


    68 yr. old granny
    New diagnosed with proctosigmoiditis - 6/2008
     Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
    Probiotic Align, Prilosec for GERD
    Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
    January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
     
     
     
     
     


    notsosicklygirl
    Forum Moderator


    Date Joined Dec 2008
    Total Posts : 16038
       Posted 1/24/2009 9:51 AM (GMT -6)   

    Sounds like my symptoms. I hope you're feeling better soon. I am so sorry you're so down. I always thought I would just have proctitis too but I recently got much worse. I am sure it has spread past my rectum at this point. I can't even get a colonoscopy because I don't have insurance. Honestly, I wouldn't go to the hospital unless I was literally dying because id almost rather deal with death than debt at this point in my life turn It could be a lot worse hun. Get some rest and take the pain pills if you need to. You will be better soon and back to planning your next little one. I have my period and had bad BM this morning. I am feeling sort of down too. I don't even know if I have period cramps or gotta poo cramps, hah.


    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)


    Red_34
    Forum Moderator


    Date Joined Apr 2004
    Total Posts : 23551
       Posted 1/24/2009 3:12 PM (GMT -6)   
    I am confused, what does he mean it's like pulling teeth? I don't get 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-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
    To help Healingwell - click here: DONATE
     
     
     
     

     
     


    kops2da
    Veteran Member


    Date Joined Jun 2008
    Total Posts : 2865
       Posted 1/24/2009 4:47 PM (GMT -6)   

    "like pulling teeth" is called an idom - means very difficult - hard to do/determine!

    ElaineNY


    68 yr. old granny
    New diagnosed with proctosigmoiditis - 6/2008
     Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
    Probiotic Align, Prilosec for GERD
    Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
    January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
     
     
     
     
     


    Old Hat
    Veteran Member


    Date Joined Feb 2007
    Total Posts : 5165
       Posted 1/24/2009 10:31 PM (GMT -6)   
    And he picked a strange idiom at that! What he probably means to say is that from scope to scope, your results can vary-- so try not to obsess on the location of inflammation he just described. A UCer can be miserable due to severe proctitis, finally get it under control after some time, & then later have a flare that extends higher up. That's the unpredictable nature of UC. We learn to accept that. You will, too. Just try to take it one day at a time. Many members taking 6MP report that it takes a few months to kick in-- so give yourself time to recuperate. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

    WishfulMA
    Regular Member


    Date Joined Jul 2008
    Total Posts : 197
       Posted 1/25/2009 6:26 PM (GMT -6)   

    Thank you all for your advice and care/concerns. I just got so confused because one Dr. said left-sided colitis and one Dr. said it was proctosigmoiditis. It really looks like anytime inflammation passes the rectum it is on the left side.

    I am more alarmed that I am not on any rectal meds. I have an appt Friday as a follow up so I will ask. So far still no appetite from the prednisone.  smilewinkgrin  I am keeping my fingers crossed. Last time I was on steriods I gained a TON of weight!!!

    I had a bowel movement this morning and there was blood. I know I have to give the 6MP time. I still can't believe that regardless of where it is located, I need such a powerful drug to get me in remission. I tried rectal meds for the past year with asacol and a few doses of prednisone. I become resistant to pred and I had to choice but to take an immune sup. drug. I tried to avoid it sooo badly. I was so scared and I stil am.

    Elaine - I saw your post and will comment on that thread...but your case sounds a lot like mine. I tried the enemas for MONTHS and MONTHS and no improvement. Obviously taking 12 asacol as well and canasa with the enemas did not put me in remission. So I had to move on. I know your concern with your husband though and I would not wish prednisone on anybody. I am coming out of my skin right now. I have to take SLEEPING PILLS with klonopin to even sleep. I am wack job! Anyway, I wish you all the best and thank god everyday that you are all here!!!


    severe ulcerative proctitis - march 05 diagnosed
    proctosigmoiditis - january 09 diagnosed
    hospitalized - 3/08 for 6 days of IV steriods
    hospitalized - 1/09 for 5 days of IV steriods / put on 6MP (50 mgs)
    past meds: colozol, sulfasalzine, hydrocortisone enemas, canasa, rowasa and prednisone 
    current meds: 6MP (50mgs), Asacol 12 pills,  Primal Defense Ultra Probiotic, fish oil, calcium w/ vitamin d 2x a day, prenatal vitamin & extra vitamin c and b12
     


    emory
    Regular Member


    Date Joined Aug 2008
    Total Posts : 327
       Posted 1/25/2009 9:04 PM (GMT -6)   
    Hi Wishful,

    I haven't been reading the forum for a while, so just learned of what you've been through lately, with the hospitalization and 6MP. What a start to the year! I hope things will only improve from here. Sending you hugs, and wishing you sleep (I hate insomnia!) --

    emory
    40, female
    Dx ulcerative proctitis, 3-5 cm, June 2008. Still flaring? Not sure.
    Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
    25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
    Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg and Trazodone 75 mg for sleep/anxiety
    2.5 mg methimazole for thyroid
    Had some success with acupuncture
    Osteopenia and other assorted ailments


    Kiss520
    Veteran Member


    Date Joined Jun 2008
    Total Posts : 742
       Posted 1/25/2009 9:59 PM (GMT -6)   
    My prayers are with you and your efforts to conceive. I'm sorry you're going through such trouble, and I hope it gets better soon!
    Katie, 30.   Chicago 'burbs.
    DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
    Current Treament:  Spinach/Sunflower Seed Diet
    Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron, Zoloft, Acidophilus.
    Status:  Remission
     
     
     
     


    WishfulMA
    Regular Member


    Date Joined Jul 2008
    Total Posts : 197
       Posted 1/26/2009 10:13 PM (GMT -6)   
    Emory - i missed you!! how are you feeling? still flaring? have you changed anything up?

    Kiss - i still can not believe you are in remission!! how much inflammation did you have? i remember when you started the diet in september. I was a major lurker on the forum. what does your doctor say?
    severe ulcerative proctitis - march 05 diagnosed
    proctosigmoiditis - january 09 diagnosed
    hospitalized - 3/08 for 6 days of IV steriods
    hospitalized - 1/09 for 5 days of IV steriods / put on 6MP (50 mgs)
    past meds: colozol, sulfasalzine, hydrocortisone enemas, canasa, rowasa and prednisone 
    current meds: 6MP (50mgs), Asacol 12 pills,  Primal Defense Ultra Probiotic, fish oil, calcium w/ vitamin d 2x a day, prenatal vitamin & extra vitamin c and b12
     


    emory
    Regular Member


    Date Joined Aug 2008
    Total Posts : 327
       Posted 1/26/2009 11:24 PM (GMT -6)   
    Wishful, I'm feeling alright. (I hate even typing that -- don't want to jinx myself!) I've almost tapered off the hydrocortisone suppositories, and have tapered off klonopin. In mid-December, I started taking magnesium citrate (Natural Calm) hoping it would help my migraines. Not only has it seemed to help there (again, knock on wood), but it seems to have improved UC stuff as well. And it definitely does help with sleep/anxiety. I can only take a little bit, though, about 100 mg, or stools get loose. And none of us want to go there on purpose! (I've also been eating a lot of sunflower butter, thanks to cfromutah and company, so getting a good dose of magnesium that way as well.)

    Katie, I'm so glad you're in remission! I also remember when you started the diet; I keep reading all the spinach/sunflower posts but haven't buckled down and really gone for it, although I've always eaten quite a bit of spinach anyway.

    Wishful, I hope and pray this year will bring a baby into your life...

    emory
    40, female
    Dx ulcerative proctitis, 3-5 cm, June 2008. Still flaring? Not sure.
    Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
    25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
    Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg and Trazodone 75 mg for sleep/anxiety
    2.5 mg methimazole for thyroid
    Had some success with acupuncture
    Osteopenia and other assorted ailments


    kops2da
    Veteran Member


    Date Joined Jun 2008
    Total Posts : 2865
       Posted 1/27/2009 8:28 AM (GMT -6)   

    emory - also missed you and happy to hear of your improvement!  I have used the hydrocortisone enemas for 10 days - last Friday off because the symptoms were getting worse.  BUT - using them again for two nights have improved everything - yes, hoping by typing this I am not jinxing myself!

    Just seems like so LONG to try to get in remission - maybe it will come with Spring.

    ElaineNY


    68 yr. old granny
    New diagnosed with proctosigmoiditis - 6/2008
     Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
    Probiotic Align, Prilosec for GERD
    Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
    January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
     
     
     
     
     


    WishfulMA
    Regular Member


    Date Joined Jul 2008
    Total Posts : 197
       Posted 1/27/2009 9:30 AM (GMT -6)   
    Emory - where do I get the natural calm? did you first try it for your headaches or for your UC? I have 2 jars of the sun butter in my house. I have not buckled down to start the diet. right now i dont feel like eating anything. i dont know if i am scared to poop or i just want to keep the area as calm as possible.

    Elaine - i am following you very closely. Hoping and praying the enemas do the trick.

    I just can't believe I am where I am right now.....it makes me sad.
    severe ulcerative proctitis - march 05 diagnosed
    proctosigmoiditis - january 09 diagnosed
    hospitalized - 3/08 for 6 days of IV steriods
    hospitalized - 1/09 for 5 days of IV steriods / put on 6MP (50 mgs)
    past meds: colozol, sulfasalzine, hydrocortisone enemas, canasa, rowasa and prednisone 
    current meds: 6MP (50mgs), Asacol 12 pills,  Primal Defense Ultra Probiotic, fish oil, calcium w/ vitamin d 2x a day, prenatal vitamin & extra vitamin c and b12
     


    kops2da
    Veteran Member


    Date Joined Jun 2008
    Total Posts : 2865
       Posted 1/27/2009 9:59 AM (GMT -6)   

    wishful - do you know use any rectal meds now?  I am sorry how you feel and certainly can relate!  Good luck to us both - all of us here!  I know there are much worse diseases and conditions but we have this one - so hope we can all find what works.  My husband has lung cancer but at least he has been in remission for 9 months with treatments.  This is discouraging at times!  I OFTEN feel like just going back to NO medications for UC - stick with my IBS meds (prilosec, xanax, etc.) and Align and see what happens!

    ElaineNY


    68 yr. old granny
    New diagnosed with proctosigmoiditis - 6/2008
     Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
    Probiotic Align, Prilosec for GERD
    Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
    January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
     
     
     
     
     


    emory
    Regular Member


    Date Joined Aug 2008
    Total Posts : 327
       Posted 1/27/2009 9:28 PM (GMT -6)   
    Hey Wishful -- I got the Natural Calm at a local vitamin shop. I think it's pretty common; you can read about it and find it for sale online if needed. I tried it first for headaches, but had UC in mind as well because of the spinach/sunflower seed discussion. If you decide to try it, start really small -- maybe half a teaspoon a day at first -- and maybe check in with your doctor first, especially since you're on a new med regime.

    The sunbutter tastes really good, by the way! You should try a spoonful if you haven't already. It's very smooth, so I don't think it would cause any problems on its way through. I understand where you're coming from, but try not to let yourself go too long without eating...I got into kind of a vicious cycle this summer when my flare was at its worst where the less I ate, the less I felt like eating, to the point where I was losing weight like crazy and had to force myself to eat tiny meals every two or three hours to help regain my appetite.

    Elaine, my fingers are crossed that things keep improving with the cort enemas!

    Hang in there, both of you --
    emory
    40, female
    Dx ulcerative proctitis, 3-5 cm, June 2008. Still flaring? Not sure.
    Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
    25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
    Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg and Trazodone 75 mg for sleep/anxiety
    2.5 mg methimazole for thyroid
    Had some success with acupuncture
    Osteopenia and other assorted ailments

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