New member, 6yr battle w/ UC, surgery soon.

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78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 4/3/2008 8:37 PM (GMT -6)   
Hello, I am a 41yr old woman who was diagnosed with UC in late 2001.  (5'4", 125-130#)  I was able to continue working for almost 2yrs after diagnosis, but my symptoms became debilitating and I would have flare-ups that lasted between 45-60 days.  According to my current Doctor, I had not experienced any proper remission since diagnosis.  During the good periods, I have as few as 4-8 bowel movements (BMs) a day.  On my worst, it has been up to 28 times in a 24hr period.  On average, I run to the bathroom between 14-20 times a day.  Diarrhea like water.  Blood.  Mucus.  Cramps.  Urgency/Incontinence.  Accidents when I don't make it in time. 
I hate my bathroom and the amount of time I must spend in it.
*I keep a BM chart where I mark down every bathroom trip in 24hr periods, AM and PM, that requires me to have to wipe my bottom.  I write the time of a BM, use "+" marks to denote 'more' of a BM (though not enough quantity to be an actual BM, but still requires attention) and M/m for mucus and B/b for bleeding.  "A" indicates an accident that required cleaning of either me or clothing.  I use underlines, dashes and dots to denote diarrhea, loose and firm-ish stools.
I have been keeping this chart since 3mo after my diagnosis so I have an accurate picture of my bowel health and can accurately report my sympms to my Dr and track patterns to plan daily outtings.
 
I have tried colazal, asacol and balsalazide disodium.  Enemas; rowasa and a cortisone one.  Everything has proven to be largely ineffective in controlling my symptoms.  I was being seen by the Doctor that founded the Georgia Colitis Foundation and he referred me to a specialist at Emory Clinic in the summer of 2005 when I weighed 111#.  This new Dr is the head of her department and she started an aggressive approach to my treatment.
We first tried 60mg of prednisone, which worked wonderfully! ...but I gained 50# in a short amount of time and as they were stepped down, by 5mg at a time, my symptoms would come back at the lower (<10mg) doses.  She would bump me back up to high doses (50, 40, 30, 20mgs) and work our way back down.  Symptoms always came back and responded less dramatically with every bump in the steroids.  She tried steroids with 6MP (mercaptopurine) and I appeared to do well.  She doubled my dose of 6MP and I had fabulous results.  It was like I was normal again!  But...as the steroids decreased, symptoms returned, nausea was present and it resulted in me crashing into a bout of acute jaundice.  I didn't think anyone could feel that bad and still live. 
Her next step was to put me on Remicade, which I've been on for just over a year, with no appreciable results at all.  I have been off of steroids since December of '07.  We tried entecort with no changes so we halted that, too.  I am currently dealing with severe nausea every afternoon/evening and was holding steady at just over 130#, but have now dropped down to 126#, and fear I may lose more.  I have a call in to her office requesting to halt the 6MP.
 
After having a terrible experience with having a BM accident while driving to my last (Feb) remicade appointment, I made the decision to go forward with surgery to remove my colon.  Hey, if it isn't going to work for me I'm gonna toss it out!  Surgery is set for May 6th.
I have the support of my husband, family and good friends.  Arrangements are made to care for me (house & hubby) in addition to farming my horse out until I can care for her myself at home.
I am frightened, because this is a major, irreversible, surgery.  However, I feel very confident that I've made the correct choice to take control of my health away from my unreliable colon and finally feel like I am in charge of my future.  I've PM'd with a few people who have had the surgery, and the recurring theme among them all, while they are now enjoying a normal life...is they wish they had done the surgery sooner.
 
I want to be able to go out with my husband at the drop of a hat.
I want to ride my horse away from home.
I want to drive my sportscar and not catalog every bathroom along the route and count the miles in between bathrooms.
I am looking forward to being able to do all these things I've been denied for the past six years.
 
I am pleased to have found this site, I only wish perhaps I had found it sooner in my illness.
78Silver

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/3/2008 9:21 PM (GMT -6)   
It sounds like you have thought a lot about surgery. I hope it goes well and that you can get back to living life outside of the bathroom. Are you going to get the J pouch eventually or the illeostomy?
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/3/2008 9:24 PM (GMT -6)   
Hey 78 -- sounds like you have been through the wringer for sure. Your decision sounds like the right thing. It is time that you get your life back. With all that you have been through and dealing with I think the surgery and the after care will be a walk in the park for you!!! Best of luck and let us know how May 6th goes for you. I know you'll be in the thoughts and prayers of many here in the forum. All the best!!!

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema every other PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 4/3/2008 9:59 PM (GMT -6)   
Well, I've never wound up in the hospital, though I've felt awful at times from sleep being constantly interrupted to run to the bathroom and the jaundice bout that was like hell on Earth.  I think it is the lack of response I am having to treatment and the severity of my symptoms that have caused me to throw up my hands and say "Yank it all out!".  Any change will be welcome relief, even if it is exchanging one set of problems for something different. 
I just don't want to be tied to my toilet any longer.
 
I will be having a two-step J-pouch surgery.
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
UC is pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 4/3/2008 11:09 PM (GMT -6)   

You seem to have tried the whole range of meds. My daughter is similar to you. Nothing is holding her in remission for long. Remicade is her next step. The doctor started to talk about surgery because he was worried about dysplasia he saw. But for now it doesn't look too worrisome (so she will try Remicade). We have talked about going to see a surgeon in the near future (even if Remicade works) just to have a starting point. She is starting to feel that even though surgery is scary and serious and permanent, living in the bathroom for the first 4-6 hours of the morning each day is no picnic either.

Keep us posted on how you are. We would be very interested in hearing about your experiences.

Feel better.


--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 60 mg prednisone
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/4/2008 8:07 AM (GMT -6)   
You were me or I was you! The only difference in our disease history is that you opted for Remicade. Remicade wasn't developed back when I was in a 2 year flare. I had jpouch surgery 7 years ago and have never regretted the decision. It will give you your life back. You will be able to go anywhere at the drop of a hat, you will be able to ride your horse. You won't be needing to know where every bathroom is in every city. You will be free from obsessing on this awful disease.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


blue85
Regular Member


Date Joined Mar 2005
Total Posts : 62
   Posted 4/4/2008 8:49 AM (GMT -6)   
Your story sounds very similar to my own.  Just reading it made me tear up because I've been there and I know excately what you are going through.
I opted for a permanent ileosotmy in June of 07' ( I was 39 y/o) and I have never regretted it for one moment. 
It is a very hard decision, the hardest one I ever made in my life.  I kept thinking somethings going to work, they will come up with  cure, I put it off longer than I should. 
I just want you to know that I will be thinking of you and I know that everythings going to turn out great.  Before you know it you and husband will be going for long drives, walks, horse riding and you will slowly start to forget how the bathroom held you hostage for all that time.  Good luck and if I can answer any questions that you might I have please don't hesitate to ask.
Dx: with Crohns in 10-2003 then changed to Ulcerative Colitis 1-2007
 
Proctocolectomy with Ileostomy June 19th 2007 - Doing great.
Prednisone 60 mg (currently tapering by 10 a week until zero), 6MP 125 mg po qd, Pentasa 500 mg 3 po tid, Calcium 400 mg with D tid, Iron po tid, Vit C po tid, Tylenol #3 prn, Multivitamin, Remicade - Quit working, Asacol, Colozal, Abatacept Study
 
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/4/2008 9:46 AM (GMT -6)   
Silver - sorry that you had to find us, but we're glad you did!

It sounds like surgery is the best choice for you - and as others have said it should give you a LIFE!

I'm very interested in hearing how your surgery goes - please keep us up to date!

Heal well!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 4/4/2008 2:13 PM (GMT -6)   
Any chance you were ever tested for c.diff? It might be a long shot but your symptoms sound like mine when I'm in a horrible c.diff flare. Has your GI ever done stool tests?
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema 2x daily
 


Harpo
Regular Member


Date Joined Jul 2007
Total Posts : 262
   Posted 4/4/2008 2:17 PM (GMT -6)   
Let us know how it works out... Good luck
Male 36yrs old. Indeterminate Colitis 6 yrs.


Pro-bio

Protonix
multi vitamin


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 4/4/2008 2:42 PM (GMT -6)   
sorry to hear about your struggles, it seems as though there is a light at the end of this tunnel for you. I wish you the best!
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
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 - partial remission since 03/08
Prednisone 25mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 4/4/2008 5:16 PM (GMT -6)   
I don't know what c.diff is.
I have been tested several times (3 seperate times) for parasites, infections and bacteria. All tests were negative.
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
UC is pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/4/2008 9:01 PM (GMT -6)   
C diff is a NASTY infection in the colon. Best to google it for more info. If they've tested for infections, they've probably tested for it.

I LOVE your sig! It's so true that if you can't look back and laugh then you'll cry - and that's not fun.
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

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