I had Ulcerative Colitis...

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Cher
Regular Member


Date Joined Jan 2003
Total Posts : 119
   Posted 11/30/2008 6:50 AM (GMT -6)   
Hi All,
 
It's been years since I posted on this site.  I was diagnosed several years ago and, at the time, used this site often to help cope.
 
Over the past several years, I have been on Prednisone for all but several months.  Most recently, I have been on Remicade, mercaptopurine, Asacol, and of course, Prednisone.  I also take Fosamax due to osteoporosis I developed from long-term use of Prednisone.  Anyway, after the second to the last flare I had, I promised myself (and my GI) that I would get the J-Pouch surgery once I flared again.  Well, a few months ago was the final flare I got from UC.  I knew it wasn't good for me to continue to take Prednisone for the rest of my life, and I'm fed up with flaring.
 
November 18 was stage 1 of the J-Pouch surgery for me.  I don't yet have a specific date for stage 2 but it typically is three months following the first stage.  I stopped taking Prednisone yesterday, after slowly weaning off it.  No longer do I take Asacol or 6-MP.  I still need to remind myself after every meal that I don't need to swallow four Asacol tablets.  I can pretty much eat anything but raw, fresh vegetables, nuts, and seeds for now.  I'm just getting used to changing the pouch myself too.
 
It's almost surreal since I never would have thought I'd ever say, "I had ulcerative colitis".
 
Cher

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/30/2008 7:53 AM (GMT -6)   

Congratulations!  Soon you will be enjoying fruits, nuts, and vegetables.  Surgery is live giving, go out and enjoy yourself!

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


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 11/30/2008 9:45 AM (GMT -6)   
We also find it very strange to say "Bratcat had UC." But it is wonderful to see her healthy. And no more meds! She just had her takedown on November 10 and feels wonderful. I am so glad you are adjusting to your ostomy so well. The next 3-4 months will go very quickly.

--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


quincy
Elite Member


Date Joined May 2003
Total Posts : 30406
   Posted 11/30/2008 11:33 AM (GMT -6)   
Hi Cher, welcome back! I'm happy to hear your surgery went well and that you're feeling much better.

Keep us posted as to how you're recovering and when Stage 2 happens.

Be well!!!
quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec 2 or 3  +   1 or 2 Primadophilus Reuteri Pearls @ bedtime
~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 !!!
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 11/30/2008 12:32 PM (GMT -6)   
Welcome to the club Cher. I had the first stage of my j-pouch surgery last October 20. I’m still recovering at home and I have an appointment with my surgeon this Tuesday. I should find out my date for my next surgery at that time.

Take care,
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 11/30/2008 3:31 PM (GMT -6)   

Hi Cher,

I remember you :) (I think, could be another Cher, but probably not) I too came here alot when my daughter was first diagnosed...today is her 2nd jpouch anniversary <cheers from the crowd> and she's doing great digestively.  I just wanted to wish you well and tell you that as a bystander, I really don't know what it's like to HAVE to take all those pills or suffer with the disease, but as her Mom, it's undescribable to watch...from the amount of pills to the number of times the bathroom door would open and close, open and close and just the suffering that I could see in her eyes...AWEFUL!.  It was absolute torture watching her spiral downward into such an unhealthy state and almost lose her from hemorrhaging which is what eventually sent her to surgery. 

But now, disgestively, she's doing so great and can eat anything and everything and takes no medications except for VSL #3 DS to maintain good intestinal flora.  The effects of the prednisone though, will make life difficult for her as you can see from my signature, but I guess it's a tradeoff and could be much much worse.  It's taken me a long time to get to this point of acceptance and not be angry at what Prednisone has done to her, but we're just thankful she's here, she's healthy, back at college and back to really enjoying life again.  

All the best to you as you await your takedown!   Kudos to you for taking control of your life and not letting the disease control you. 

HTH!


20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 11/30/2008 9:54 PM (GMT -6)   
CONGRATS! : )
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


Yujin
Regular Member


Date Joined Feb 2008
Total Posts : 55
   Posted 12/1/2008 12:34 AM (GMT -6)   
congratulations.. Cher... maybe in the future i will also udergo that kind of surgery... :)
Diagnosed with UC on 2007. Undergone Fistulotomy on 2005. Taking Generic Asacol 400mg 3X a day... "HEALTH IS WEALTH"


Cher
Regular Member


Date Joined Jan 2003
Total Posts : 119
   Posted 12/1/2008 9:03 AM (GMT -6)   

Hello again,

I want to thank all of you for your encouraging words and support.

It is a blessing not to have to take any colitis medications, especially Prednisone.  I may also be done with pain meds;  I haven't taken any this morning, and typically I need at least 10mg of Oxycodone at this time.  I guess I should save what I have left though considering I have another surgery coming up.

My gastroenterologist suggested Culturelle probiotics to promote healthy bacteria.  I read that some of you take probiotics now; does a specific brand work best for you or are they all pretty much the same?

Anyway, thank you again for your support and best of luck to all of you!

If anyone has any questions regarding the surgery (1st stage) feel free to ask.

Cher

 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/1/2008 10:18 AM (GMT -6)   
I go back and forth between Culturelle and Flora Q. Both are fine but Flora Q is twice the cost.

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


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 12/1/2008 5:11 PM (GMT -6)   
Cher-
I love reading about success stories. I can hear the joy in your words....
I am at my last straw- the doctors have told me that if this round of 6mp does not work it is highly recommended that I have surgery. In other words, nothing else has worked--- and I have tried all of the medications out there.

I am soooo scared of the surgery: the pain and definitely the ostomy bag. How much time will I need to be out of work? The most troubling question is : Is the surgery worth it?

I wish you the very best. From what I have heard, the worst is over for you. Isn't the second surgery usually easier on the body?

Regards.
Jackie, 43

Pancolitis, DX October 06

Lexapro, colazal 3x3, Sythroid, Protonix, Flagyl

10 infusions of Remicade- doesn't work
tried 6MP - taken off because of health concerns

tapering prednisone at 25 mg
Added 6MP- November 25th


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/1/2008 5:45 PM (GMT -6)   
Jackie, get the most experienced laparoscopic surgeon you can find and go for it. If my experience is any indication, you will not believe the difference in your life.

I was out of work 2-3 weeks both times (hence the emphasis on "laparoscopic"--it's a far faster recovery for most). I had almost no pain (in fact, except for one shot of painkiller after the second surgery, which I took mainly to get the nursing staff off my back, I took no painkillers after either. Again--I credit the laparoscopic nature of the surgery for this.)

The bag was not easy but it was easier than I thought, and way more livable than active UC. At some times I felt very tough and proud--I'd be in a room for a contentious work meeting and think "Probably no one else in this room could deal with this, but I am. Let me at 'em!" You'll adjust to it too, if you need to.

I was lucky that dysplasia finally made the decision for me; I should have had the surgery years ago.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/1/2008 7:53 PM (GMT -6)   

And I would counter by saying get the most experienced surgeon possible; no matter which style they perform open vs. lapro.  I had the open surgery with a surgeon who has done over 2,000 jpouches.  My surgery was 1.75 hours and I was back at work 3 weeks from my surgery date.  I also started driving the 7th day following surgery.  No one can predict your recovery but there are many stories similar to mine.  Research your surgical options and visit www.j-pouch.org for questions and support.

 

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


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 12/1/2008 8:57 PM (GMT -6)   
Sue, I’m amassed that you were able to go back to work after 3 weeks. I was in the hospital for 3 weeks. Today it has been 6 weeks since surgery and I am not ready to go back to work any time soon. Today I went out shopping on my own for the first time since surgery. I visited 3 stores and was gone for 90 minutes. I was totally exhausted and needed a nap when I got back home. Tomorrow I have an appointment with my surgeon and I hope to get a date for my next surgery.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 12/1/2008 9:11 PM (GMT -6)   
Congrats Cher and those of you also in your surgery recuperation period. Happy to hear you are all on your way to a healthier and saner life. I'm sure your upcoming holidays are going to be more enjoyable than others have been in the past.

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 20 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


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/1/2008 11:21 PM (GMT -6)   
I'm a strong advocate for at least consulting with someone who does the surgery laparoscopically partly because the research on it in the last five years has established that there are clear advantages to the laparoscopic version, on average, when it's done by someone who is trained. It's not a guarantee in either case, of course, but there is good data on shorter healing times, less ileus and future obstruction, and better pain control--again, on average. (Obviously there are people outside that average with both approaches; that's how averages get calculated)! I wanted the shot at the lower-intervention option and I was fortunate enough to get it, and highly recommend it.

I definitely agree, though, that whichever you choose, you want the most experienced surgeon you can get. You should have someone who has done many hundreds of these, at a minimum.

(I'd just add, for anyone reading along and trying to figure out how to plan life after this surgery, that although I wasn't on painkillers, I didn't start driving until 14 days out. The hospital had given me directions in writing not to. I could just picture getting through the ordeal of the surgery and then ending up having an accident and ending up in court testifying "Yes, I was told not to drive...yes, that's the document they gave me...yes, I drove anyway...!")

Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 12/2/2008 12:29 AM (GMT -6)   
Cher, hope your recovery goes well and well done for making that tough decision.

Seems like there were 3 or 4 of us who had operations in the 30 days starting from 20th Oct. Is that a coincidence or what!

I know that the recovery time in hospital is about 1 day less if you have laprascopic surgery, but the guy i was in hospital with opted for the incision after consulting 5 surgeons. Laprascopic surgery takes longer and the surgeon doesn't have as much working space. I guess people rank the pros and cons in different order in coming to a decision as to which approach to take. In my case, my colon had a coating of fat which made laproscopic surgery impossible, so mine got converted to an incision.
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/2/2008 12:45 AM (GMT -6)   
"i had UC" is the best sentence in the world, lol.
Jackie, it's def worth it!!! I wish i had done it the first day i saw blood! I have a perm ileo, i chose not to have the j-pouch and i had a open surgery, instead of laproscopic. I just didnt think it made that much of a difference, and there is always the chance that they will start out at lapro and end up with a regular surgery.
To everyone who has had surgery on here, enjoy your disease free holiday where you can eat all of whatever you want!

Cher
Regular Member


Date Joined Jan 2003
Total Posts : 119
   Posted 12/2/2008 3:38 PM (GMT -6)   

Hi All,

I had the traditional surgical incision and was in the hospital for four days.  Right before the surgery, I had a cosultation with the anesthesiologist and he asked me what I feared most about the surgery - I told him my biggest fear was pain.  He reassured me that it was his job to make sure that I felt the least amount of pain and told me that when I wake up, I should feel no pain at all.  So that was comforting; however, I can tell you that the only thing I remember about waking up when it was over was saying "The pain's a 7!!!"  I knew beforehand that they'd ask me to rate the pain I felt on a scale of 1 to 10 (1 being the least amount of pain).  But as soon as they increase the pain medication (given intravenously) the pain subsides.  So it wasn't as bad as I anticipated.  Today is my two week anniversary and I'm off the pain medication.

Right now, I am very low on energy.  I can totally relate to Paul L; I had a follow-up appointment today with my surgeon and had to take two trains to get to the hospital.  On top of that, I left during rush hour and had to stand for 45 minutes on the train.  That was quite exhausting for me.  I took a nap as soon as I got home and feel I could use another.  I have another appointment in about three weeks and then I'll set a specific date for the reversal.

To those of you considering surgery, get in touch with at least two people who had the surgery done by the same surgeon you would use.  That's what I did, and it was comforting.  I would think that most people who have had the surgery wouldn't mind talking to someone else about it.  Ask the surgeon's secretary if you can contact some people who had the surgery.  The two people I spoke to were doing very well now, so it made me more comfortable that I chose the right surgeon.  I also asked both of them plenty of questions so it was helpful.

As far as going back to work is concerned, I am definitely not ready right now.  I get exhausted too quickly; maybe in a few more weeks.  Everybody's body is different though - I heard some people go back to work after three weeks.

The ostomy bag isn't so bad.  It definitely takes getting used to and it can be nuissance.  One of the worst parts about it is the smell when you empty the bag; I choose not to use a deodorant, since it seems a waste of my time to have to use it after every time I empty the bag.  I have visiting nurses to help me twice a week (for when I need to change the bag).  I almost have the hang of it!

I've read that the second surgery is most stressful for people since you're reconnected and your body has to adjust a second time.  Only this time you're wiping your butt about 10 times a day rather than emptying a bag.

Again, I appreciate everybody's support!

Cher


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/2/2008 4:01 PM (GMT -6)   
Cher-the smell wont be as bad after a while, and you will get your energy back soon!

Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 12/2/2008 5:23 PM (GMT -6)   
Hi Cher,
The second surgery for my daughter was much easier than the first. After her takedown, she was going to the bathroom quite alot with only a couple of accidents, but those were while she was still in the hospital. Two weeks later, she jumped in the car and was off to see her friends...living life again and so happy to be on her way to recovery. She too was very tired and napped alot, but allow yourself the down time...you've been through alot and will be back in the swing of things in no time. All the best to you!
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 


Cher
Regular Member


Date Joined Jan 2003
Total Posts : 119
   Posted 12/4/2008 3:06 PM (GMT -6)   
I'm in the hospital right now due to dehydration. No wonder I've been feeling so crappy lately. I've nearly passed out in the shower twice. Lesson learned; drink aplenty and eat even with no appetite.

Paul had mentioned his lack of energy too; Paul did you get your blood pressure checked? I wouldn't have known I was dehydrated had my visiting nurse not checked my blood pressure.

Cher

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 12/4/2008 5:05 PM (GMT -6)   

Thanks to all for your advice--- and Cher--- I hope you recover very very quickly from your dehydration....

 

Down to 20 mg prednisone and 50 mg 6MP-- one week. Still bleeding and having some urgency -- down to 6 bloody bm's (mostly diarrhea) YEAH!


Jackie, 43

Pancolitis, DX October 06

Lexapro, colazal 3x3, Sythroid, Protonix, Flagyl

10 infusions of Remicade- doesn't work
tried 6MP - taken off because of health concerns

tapering prednisone at 25 mg
Added 6MP- November 25th


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 12/4/2008 5:19 PM (GMT -6)   
Cher, sorry to hear you are in the hospital. Dehydration can be serious. I became dehydrated when I was in the hospital after surgery. It happened before I went home. As a result they kept me in the hospital for a total of 22 days. I have not had my blood pressure checked since I have been home.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


sparkle20x
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 12/11/2008 12:49 PM (GMT -6)   
I have a suregon visiting me in hospital tommorow,i have tried all medication and currently on steriods!going through yet another flare up!and its christmas great.well am scared about surgery it's something ive left at the back of my mind,what if i regreted it or something went wrong and i definetly dont want a bag am 19 and love my body and want to wear bikini's etc on holiday and not to be self consious!anyone got any advice as i feel so alone on this subject!!!!! x x x
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