My apology to you guys....

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kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/11/2009 8:17 AM (GMT -6)   
In several posts here I have stated that I have not had your kind of urgency, never had an accident home or away, etc.  I sometimes sounded like I had no respect or empathy for what you all are going through.  I want everyone to know that is not true.  I AM feeling fortunate that it has not happened to me - yet!  I am also 68, newly diagnosed which is unusual.  I have had IBS for years so the doctors say - diagnosed with an upper GI test years ago.  My GI doc now says I may have had IBD for years - just mild and no bleeding (which took me for the colonoscopy last year).
Last night I was remembering living in Germany in 1961, young, new mother, sharing a bathroom (had to go downstairs from our apartment) - sharing with 9 people.  Just could not imagine what it would have been like to have UC then. 
Please accept my appology if I sounded insensitive.  I wish you all the best - some of my methods of "holding it" work for me - that is all I am thankful for.
I am praying for a cure or at least better medication for this DD for my grandchildren, etc.  Hang in there!! Thanks so much for your info and concern for me on this forum.
Prednisone is working for me now and 6MP is ok - going for blood tests today - hoping all is ok so I can continue to take it.
Hugs, ElaineNY

 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/11/2009 8:24 AM (GMT -6)   
Yes you are very lucky indeed! I wished I could say the same :( I've never had an accident nor had I have had to go in unusual places. I can hold it to an extent but if I am flaring and I hold it, I am in so much massive pain that I feel like I'm going to pass out. I get all shaky, cold, sweaty - not fun.

I for one didn't think you sounded insensitive but rather the fact that you weren't quite aware of what some of us have to go thru? So even though I don't feel your apology is necessary, thank you anyway :)
 @--->--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
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IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 3/11/2009 8:35 AM (GMT -6)   
I haven't thought that any of your posts have been insensitive. At the same time I think that we're all entitled to a little bit of leniency. We're all dealing with a chronic condition and sometimes that plays with our emotions. We can be cranky one minute and apologetic the next. I have found someone else on this forum to be a bit irritating lately, but I have found this person in the past to have been very cordial so I just take them with a grain of salt.

If we can't put up with each other then we're all in trouble right? Who else will listen to us describe what our excrement looks like in great detail and have advise on it? wink
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 3 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)
- Canasa 1000mg @night. Started Oct. 23, 2008
- Niferex-150 Forte 1 capsule 2x Daily


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 3/11/2009 9:23 AM (GMT -6)   

Not to steal your thread, but I think the post I left on that thread was too sharp and I was over-sensitive.  So I aplogize as well.  That kind of urgency is a relatively new development for me and I haven't accepted it well.

I also did not find your posts insensitive.


UC diagnosed 10/05, first symptoms 1983
6mp * asacol 12/daily * rowasa pm * cortifoam am 
 Culturelle Probiotic - prilosec - metamucil capsules
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/11/2009 9:44 AM (GMT -6)   
I didn't find you insensitive at all...you didn't suggest that those of us who have urgency should just "hold it." But thank you anyway!

I just hate the urgency because it makes it so hard to go do things and I feel like a prisoner. It's not fun being afraid to be more than a 15 second dash from a bathroom. :(
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/11/2009 12:31 PM (GMT -6)   
I didn't find you insensitive either, but I sure am jealous that you can hold it LOL...just goes to show how we do differ with our symptoms, even if the majority do have issues with holding it sometimes the majority forgets that it's not exactly the same for everyone when it comes to holding it...you were not insensitive Kops2da, supersaw was.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16277
   Posted 3/11/2009 12:45 PM (GMT -6)   
Elanie - you are extremely sensitive. I am happy that your UC is not too severe. You have to focus on getting healthy so you can manage your other problems. You shouldn't feel bad, you have your experiences and others have their own. I literally can't hold it when I am in a bad flare. I have to run for the toilet and if I run too fast, that might cause an accident, tongue . I shouldn't laugh, it's really not funny but I have a sick sense of humor. I am lucky that I have been able to hold it the few times I was cramping in my car, feeling like I wouldn't make it to a bathroom. I wish urgency wasn't one of the issues I dealt with. It's probably the worst of the bunch. I also hate going to the bathroom 5x in a row and nothing much coming out. I hope there is better treatment for us in the future and for our children and their children. My heart goes out to young people dealing with this disease. It has been devestating for me and I was diagnosed in my twenties. I can't imagine people living through their childhood inflicted with such an awful illness. It's not just physically draining, it is emotionally painful and embarrassing. I wish I could turn back the clock and never end up with UC. I think about that all the time... 
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/12/2009 5:20 AM (GMT -6)   
Kops, while I didn't read the thread you are referring to, I think it is important for people with different severities of disease to post. It helps push each of us to do all that we can do and not be held back by this disease!!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/12/2009 8:16 AM (GMT -6)   

Thanks everyone!  After many years of health care problems and options - and my husband who has many health issues - I have learned YOU have to be your best advocate for YOUR health - YOUR body!  No one knows it like you do.  Don't let anyone tell you different.  Yes, this is a DD but there is a lot of ways to "live with" it and have a normal life.  Look at the people in wheelchairs, etc. etc. who do so much!  My son is a research scientist and now working on a cure for Alzheimer and MS.  I pray every day they find a cure for UC and Crohns also.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 3/12/2009 11:06 AM (GMT -6)   
Elaine.....we cannot be everything to everyone, and the fact that we all have different treatment options plus results is at times very frustrating. It's hard to be empathetic to every situation or claim to know what another is going through, but all we can do is offer suggestions and support.

Not all desire support in all the forms we share/offer....as I can truly attest to.
We're all on here for different reasons.

You're extremely supportive, at times frustrated, but have much experience in your learning to cope with UC. That's all worth sharing. Oh...your optimism always rings through.

No need to apologise.

quincy xx
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 3/12/2009 2:34 PM (GMT -6)   
     I never found you to be insensitive either Elaine.  For those of you who have trouble "holding it"  (been there many times), perhaps  placing a porta pot in one of the rooms would make you feel more at ease?  I have three of them throughout the house...believe me, when you live in a house with one john and ya gotta go...wow...they are a God send!  We used to keep one in our Astro Van but now we have a Ford Expedition....hmmm...that's gonna take some manuevering.
 
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.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/12/2009 3:11 PM (GMT -6)   

Hi Christine - thanks!

I used to have a porta-potty in the house (and we have two bathrooms) because if the power goes out we don't have water.  Always got to be prepared!

How are you doing?  I see doctor on Monday about my blood tests, etc.  Still on 20 mg. prednisone and 50mg. 6MP.  Not sure the next move.  I think if I reduce the prednisone anymore I will be in trouble.  Seeing dark (I assume blood) mixed with stool two days now.  No other bad symptoms but little "discomfort" left side.  I am thinking maybe adding steroid suppositories if doctor will go along since I can't take anything with mesalamine or Colazal.

Hope you are doing well.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 3/13/2009 7:21 PM (GMT -6)   
     So far, so good Elaine.  Thank you for asking.  By all means mention those CBC's to your doctor.  I am very surprised he hasn't prescribed monthly blood tests when you went on the 6MP.  Your white count has a tendency to drop while on it.  They have to make sure it doesn't go too low.  I see my GI doctor on Wednesday.  His office called today to ask if I had my blood tests because the last one the nurse noticed was last December!!  She must have overlooked the report because I know for certain the lab sends him the monthly reports faithfully.
     It sounds like you may have a small amount of blood in your stool.  Are you watching your diet?  Sometimes if you eat something spicy or beets...that could do it.  I remember one time I ate beets and thought I was bleeding. 
     My GI doctor had me on a pretty fast taper last time...40 mgm with a 10 mgm per week taper and the last week 5 mgm.  It took three tries but finally the 6MP must have kicked in with the prednisone.  You may have to start the enemas if you are bleeding.  Let's hope not.  Good luck!
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.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/13/2009 7:33 PM (GMT -6)   

Christine - When I said see doc about blood tests, I meant for the results.  I had them done Wednesday.  I talked with my NP last week and she was surprised he had not ordered them and did so right away.  Sometimes that happens.  Anyway, I will find out Monday.  I usually see the NP but will see him Monday because of the new meds, etc.

I have had a very little blood - not really "bleeding" - just mixed with mucous like in first BM - which are firm, 2 or 3 in morning - pretty normal.  Only thing I have most problem with is butt ache (you know - where you sit) and GAS.  Yes, I have been having problems with KEEPING FROM eating - munchies from the prednisone.  Otherwise, I feel so good - arthritis is wonderful, skin is much better, knees better, more energy, etc. etc.  Can't wait until I am off prednisone and "fall on my face" once again.  LOL

I will write after I see doc. 

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/13/2009 8:56 PM (GMT -6)   
I think we all just state what Colitis is like for us. We don't mean that it's the same for you. While I do have issues with urgency when I'm flaring, I don't have issues with pain. However, I know that some of you guys have unbearable pain when you're flaring.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

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