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Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 8/18/2009 10:07 AM (GMT -6)   
I am looking for people who are thinking of having surgery, are going to have surgery, or have actually had surgery to have there bowel removed.

I am wanting to talk to people about there thoughts feelings and experiences about having surgery, please contact me privately if you want too on the email in my profile.

Thanks

Xx
Ulcerative colitis for around 15 years untreated (Im am 28 years old now)

ASACOL, PREDNISONE, PENTASA do not work for me. Western medicines only suppress the symptoms they do not heal the underlying cause!

Now looking at alternate medicines, diet change and alternate therapies. Jini patel Thompson - Healing the gut is extremely good, as well as Breaking the vicious cycle -SCD

Started george's always active aloe vera juice

Started Japanese Acupuncture, Therapeutic massage and Kinesiology

Calcium 3 x a day for osteoporosis

My biggest concern BOWEL CANCER :O(


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 8/18/2009 10:43 AM (GMT -6)   
Hi. My son, who is 18 is scheduled for surgery this Oct 7, however it may be done sooner. He was diagnosed with ulcerative proctitis 2 years ago and has gone through 3 flares, all of which have gotten worse and worse. His colitis is now through his whole colon and he can no longer find relief with drugs. He has been through 3 rounds of pred and we have gone the remicade route but he has finally decided that enough is enough and he wants to take control of his life again. Originally we were all very scared of surgery, and I have to admit that now that it is approaching very quickly, I am getting very nervous again, but the more reading we have done and the more people we have spoken with, it seems that the major complaint is that they did not do it sooner. Of course we are very worried about complications, but most can be dealt with and I truly believe that just about anything would be better than the way he has lived the last two years. I actually have a question for all you guys out there that have had surgery. Did any of your doctors suggest that you freeze sperm samples? I understand that there is a small, but significant, risk that men can come out of the surgery sterile....something like 1%. Just seems strange that no one has suggested it to us. I am about to ask our doctor, but just wondering what you guys were all told.

I am sure that you will have a lot of people add to this thread and I, also, am very interested in what everyone has to say.

JingleBell
Regular Member


Date Joined Oct 2008
Total Posts : 80
   Posted 8/18/2009 11:39 AM (GMT -6)   
I have a surgical consult on August 28th. I was diagnosed when I was 8 and now am 36. I have tried just about everything from traditional drugs to alternative therapies and just can't seem to get my flaring under control. (I have been in a flare for the past 5 years) My last colonoscopy showed severe scare tissue and narrowing passages in my colon. Which seem to be getter smaller much faster since the colonoscopy (which was on Aug 3). I have had to start taking laxatives to be able to go. Extreme difference from the regular 3-5 per day that I was having. I am excited about getting the surgery. 28 years with this disease is quite enough and although I know that cutting my colon out will only relieve the major symptoms of this disease I also know that I lower my chances of colon cancer significantly. Good luck in your pursuit.
 


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 8/18/2009 5:29 PM (GMT -6)   
I am currently in Rochester, MN being seen at the Mayo Clinic and hoping to have surgery this Friday (Aug 21). I was dx'd in Nov 2007 with severe pancolitis and have been flaring pretty much ever since. I have been on 4800mg of Asacol since diagnosis. I didn't take azathioprene (Imuran/6MP) due to a family and personal history of skin cancer/precancerous cells. I started Remicade in Feb 2009 while in the hospital for severe anemia as I was in a pretty bad flare that wouldn't go away. I have been on 5mg/kg every 4 weeks since the initial doses. It isn't doing anything for me. As of my last cscope my doc confirmed that I wasn't responding to it and due to the severity of my disease and the fact that I only respond to prednisone (steroid resistant/dependent at this point) and am still anemic he recommended surgery - soon. That was July 23rd...and here I am. I currently have D 5-30x/day with urgency and often don't make it to the bathroom.

I'm planning on having j-pouch surgery and am hoping that everything will reach once they get in there as I am willing to deal with a permanent bag, but I'd prefer not to. I'm expecting a 2 step surgery so I will have to come back later this year for takedown surgery. This was a difficult but quick decision for me as the effect that this DD has had on my life this year are such that I am looking forward to getting my life back. I am nervous and scared, but also excited. I know that it will be a major life changing event for me but in a good way. Mentally while I am prepared for this I still have a part of me that asks...what if...and then I run for the bathroom which shuts that little part up. smilewinkgrin

So far my experiences with my GI, my GP, my hematologist, and the Mayo GI have been fabulous. I never felt the need for a second opinion although I am getting one by default while here at Mayo (part of their process). I do wish that I had kept better personal records of my time on steroids, when I took what drugs (I did take Xifaxin a couple of times), symptoms that came and went, and just a basic record of my journey as it would have made answering some of the Mayo GI's questions a little easier. I have to admit that carrying in my book of medical records was a bit daunting for someone who hardly ever saw a doctor until I got UC.

I have tried making modifications to my diet and the removal of some foods has led to an improvement...but my overall quality of life is horrible compared to what it was and as I said, I'm looking forward to getting my life back. yeah

I don't know if you have been there yet but both jpouch.org and jpouch.net are great sites for information on surgery. The information can be a little scary but you have to remember that it's like this forum...people that don't have problems generally don't hang out on the forums...they are out living their lives to the fullest. I will admit that it is nice to be able to read information provided by people like suebear and summerstorm who are both enjoying life and providing information on the forums.

I wish you luck in your pursuit of information and a solution that works for you.

Collicat - I am female so freezing sperm is not a concern for me but I have read on more than one site that people have done it and recommend doing it - just in case...
Ducridr - 35 - female

Diagnosed w/ severe pancolitis 11/20/2007

Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 8/18/2009 7:03 PM (GMT -6)   
To those of you that are wondering about surgery, there are many wonderful people who are more than willing to answer your questions on the ostomies board.  Just go to the board and post your qustion and you will find the most friendly, compassionate, supportive and informative people.  They are always willing to share their stories and to help anyone who needs it.

 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/18/2009 9:54 PM (GMT -6)   
well i had surgery a little over 2 years ago, i have a perm ileo, which means i will always have a bag.
yeah its scary, yeah it hurts and yeah recovery is a b*(^&,
That being said it is SOOOOO worth it!!!
 
I went through 8 years of misery wiht that stupid colon that didnt want me, and then i finally realized i didnt want it either!  and i decided to beat the disease and literally take my colon to the trash!
 
Its awesome now, i can eat anything, go anywhere, do anything, wear anything, and nooone knows!  i promise!!!
 
Can it be a bit annoying sometimes? yeah.  Was it my life long dream to have a bag?  NO, but let me tell you it sure beats UC, and its really convenient, lol.  While other non UC people are in the bathroom missing stuff, im inand out 2 or 3 minutes, lol.  Much easier!
 
I wish i had done it the minute i saw blood, i wish i had just gone and said, just take it out im not wasting all my time on this stupid thing.  but i didnt and i cant undo that,but i can live my life now, to the fullest!!!
 
if you have questions and want more detailed answers come to the ostomy board and read over some of the posts already there and then ask all the technical quesitons you want we will all try our best to answer!

Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 8/19/2009 9:52 PM (GMT -6)   
Where do you go for the ostomy board?
Nutz
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  Currently taking 6MP 50mg, Prednisone 30mg, Lialda 2 tabs/day, Colocort enemas, Canasa suppositories


broadwind
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 8/19/2009 11:55 PM (GMT -6)   
I had surgery on the 28th May 2009. Which removed my colon and i have two more surgeries to go to form a J-Pouch and close my stoma.

It was my first experience of any type of surgery. If you are so sick that you are continually flaring, and tried the strong medications and that is still not helping then i think surgery is a good answer. I kept thinking of the long term damage the medicines do to the rest of your body. I thought why should i ruin the rest of my body for the sake of my colon.

I dont regret at all having my surgery. My body is so much healthier with my colon gone. The body spends so much energy attacking the colon and when its gone you feel so much better.

Surgery is not easy for the first few weeks afterwards you are in quite a lot of pain. I had two complications which were some blockages but they cleared up and i can life a much better life now.
Mental:
OCD/Social Anxiety/Generalized Anxiety since 9yrs old - Took 20mg/day Paxil (2002-2008)
Physical:
Ulcerative Colitis - Took lots of meds but they failed, now living without a Large Intestine and liking it!
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/20/2009 8:04 AM (GMT -6)   
nutz-at the top of the screen, click on diseases and conditions, then scroll down to the section that says "ostomies"
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