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Gottagonow
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/3/2007 5:24 PM (GMT -7)   
Hi I'm new to this group, I've had UC for about 5 years, and it is coming to the point I can't stand it any more.  I have a consultation with a surgeon in a couple of days.  Does anyone know or has anyone had surgery?? Susan

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/3/2007 6:30 PM (GMT -7)   

Yes, I had j-pouch surgery 7 yerars ago due to refractive UC.  It was the best health decision I have made to date.  There are several different surgery options, you can read about 3 of them at www.j-pouch.org  If you opt for a j-pouch ask for a CR surgeon has lots of experience.  Expect a long recovery, it takes about a year for the pouch to learn to behave like a colon.  However, without the urgency, the meds, the cycles of illness, it's a good year of health and a return to a full life.

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
 


Gottagonow
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/4/2007 6:01 AM (GMT -7)   
I know I was vaque in my first writing but, here it goes. 
Sorry for being vague... I'm 37 years old and I'm very new to all the lingo and am not sure what/how to write it all down, and how to gather my thoughts. 
I was first diagnosed with UC in 03 during my last healthy pregnancy. (Hayden was born healthy August 21)  That is when I was actually diagnosed but I have always had issues, i can even remember as a child, nervous stomach, diarrhea always needing to go.  So since 03 I have taken many drugs (too many for my liking-I don't like to take anything especially if it doesn't help! And nothing was!)  Prednisone,Asacol, Rowasa enemas, Remicade and as things progressed I tried other alternitives, the natural approach Flax,Proteolytic enzymes, Acidophilis L-Glutamine.  I tried changing my eating habits, drinking more water, drinking less water, excercising, All the while feeling more and more out of control.
 Since Hayden's birth, I have had two unhealthy pregnancies.  Jeb was born too early at 18 weeks gestation Nov. 22 2005 and then Mattew, born 20 weeks gestation Feb. 21 2007.  I also have two other healthy children; Steven is almost 10 and Ava is 5.  Both are/were healthy pregnancies and babies, now children. 
As far as how things are for me, much like I have been reading on all of your chats, miserable!  I am just so tired of having being afraid of leaving the house.  So many times I just find ways/excuses to stay home.  That's the only place I feel comfortable.  I do try to live a regular life, for my children and my husband, but all the while I'm thinking where is the bathroom and do I have everything I need to clean-up with?  I have had accidents in every place imaginable.  I just can't control myself what so ever.  I am most humilated when I have to have my children hide their eyes while I clean myself up.  I don't think I'm alone in what I'm saying!  Actually, reading through all of your messages/chats let's me know that I'm not alone.  I hate to talk to my husband (he always listens when i break down, and i know he does his best to be supportive but it doesn't leave you with the most romantic feelings I suppose...) It even affects our sex life! 
Like I said before i don't like to take meds, but I have always tried and followed what my GI told me to do. And I was even thinking foolishly, that I could handle it myself and trick my body into behaving, I've been humbled into submision.  Surgery is my next step.  I don't even know what/when/how.  I've been reading and trying to understand the types, and what is expected.  My GI Dr. has refered me to a Surgeon at the Cleveland Clinic, we meet this Wed.  One question that my GI always asks is are you experiencing diarrhea?  I have it every day all day long all the time!  It's never anything other than a loose uncontrollable mess.  I'm never constapated until two weeks ago...... 
 I have not had difficult pain other than cramps and feeling somewhat uncomfortable but this paticular day I was doubled over in pain.  I lost my appitite and didn't eat for a week and bleed throughout that week.  My GI was out of town and i was told to go to the ER but I just held out until he was back and went to him.  He put me on an antibiotic and back on Asacol.  The pain was different for me and to be constpated for 8 hours was very difficult.  Usually I go to the bathroom 15 plus times a day.  I never feel full, always going approx. 5 to 10 min after I eat.  And now since I had this last episode I have had pain after I eat.  I'm tired all the time ( I always chalked it up to pregnancies/having kids).  But it hasn't let up.  My UC has just about consumed me!
I want to get my life back, and to be "normal"  not to wear depends, isn't funny, I prefer the Poise.  My Hayden pulled one out of my purse one day and announced to everyone within earshot that "My mommy wears pull-ups!"  I just smiled with pride! 
So, I'm off to the Surgeon to get some answers and to see if this is for me.  After I've spent some time reading thorough all of your thoughts I'm hoping it is for me.  I'm tough, i expect pain, as long as i get to "normal!!!!
 
And I/we would like to try again at another baby.  (We haven't discovered why we lost the babies?  Does anyone know ANYTHING about if there is a connection?  All I know is I should be remission when we conceive.)
 
Any/all thougts would be apperciated!
Thank you!
Susan

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/4/2007 7:12 AM (GMT -7)   

The Cleveland Clinic is one of the best hospitals to have surgery for UC, you will be in good hands.  Many women have had children following j-pouch or osotmy surgery.  Be sure to take a list of all your questions regarding future pregnancies, recovery, etc. to the surgeon.  One of the very best reasons for opting for surgery is a low quality of life.  It sounds as if you might be there.  You will be astonished to find out upon waking from surgery that you no longer have UC.  Although I never had the cramping pain that most experience I always felt awful in my gut.  Waking up from surgery it was immediately apparent that the heaviness was gone and I finally knew what a normal person felt like.  I cried as I could not believe my colon was entirely responsible for that!

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
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 11/4/2007 8:45 AM (GMT -7)   
I haven't had the surgery, but it will be my only option if the Remicade fails me before something newer becomes available. I wish you the best, it truly does sound as if you're a good candidate for surgery.

Your pregnancies were likely affected by your own general health. If you were having diarrhea at that time and sick all the time, your body may just have not had enough resources to support both you and the baby. I'm sure your doctors will recommend waiting at least a year after surgery to be sure you are healed and back in a great nutritional status yourself. Good luck to you, and prayers your way.
Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 11/4/2007 1:19 PM (GMT -7)   
Hi Susan! Welcome to HealingWell :) I'm so sorry to hear that you're feeling so awful and have had such a miserable experience. Many condolences are your lost babies.

I agree with Suebear that it sounds like your horrible quality of life and HUGE desire to be well make you a candidate for surgery. I wish you the best at your appointment!

A list of questions - and a copy for the doctor - would be a great idea! That way, you won't forget what you wanted to ask. Ask those questions - no matter how trivial you think they are.

Hang in there and love those little ones! It sounds like they are the sunshine in your life :)
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Gottagonow
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/4/2007 1:31 PM (GMT -7)   
Just an add on,
I was also diagnosed with Thrombophila (blood clotting disorter) with this last pregnancy. Apparently, I have had it since my birth and never knew of it. My GI Dr. said it can be connected to the UC.??
I have developed anemia and have been on iron for the last 8mths.....I thought taking such a high dose of iron might slow things up a bit but not a chance!
The UC affects my complete colon, Pancolitis. And I don't have anyone in my family with the UC diagnoses.

Gottagonow
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/8/2007 11:32 AM (GMT -7)   
My surgery is set for Dec. 14! I am happy and scared! I feel like how you feel when your in line for the best rollercoaster at the park. Excited and scared!!!
I understand that there will be pain ahead, but I'm willing to get through it to get on the other side of this dreadful disease. I just can't beliveve I won't have UC and healthy by spring!!!!
I'll keep you posted.....
Any advice/trouble shooting would be apperciated!
And I will be getting the "J-Pouch".

expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 11/8/2007 11:46 AM (GMT -7)   
Good luck to you on your surgery! My GI is at the Cleveland Clinic, and I couldn't be happier with him. I know that when the time comes for me to have surgery, I will have it at the Clinic. I continue to be thoroughly amazed by them.
Current Medications:
- Asacol (4 pills, 2x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 11/8/2007 12:03 PM (GMT -7)   
Good luck, Gottagonow. You're getting a fabulous early Christmas present: Your life back!

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri

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