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**NiCoLe**
Regular Member


Date Joined Jan 2008
Total Posts : 39
   Posted 5/2/2008 5:20 PM (GMT -6)   
So, it wasn't until I started using this site that I realized just how serious our disease is. My question is if everyone is suffering so much, why don't we all just have the surgery??? I realize that there are risks, and some people can't afford it, but for the people who have had the disease for years and can't even work . . . why not?? I'm going back to school in Jan (after the birth of my 2nd child) and once I finish my degree, I would hope that I would be able to work. It never even occurred to me that I might now be able to. I'm just really depressed reading all of these posts. It just seems like never ending suffering. I'm only 27, I can't imagine living this way for the rest of my life.

Any opinions, experiences, whatever are welcomed!
Diagnosed in 2007, but had bowel issues for years

Sulfasalazine - 4 pills 2x a day

Hospitalized for 9 days in Feb 2008 (IV steroid)

Was using VSL #3, but it made me throw up (I'm pregnant and nauseous)

Hydrocortisone and Rowasa enemas when needed (which is usually ALWAYS!)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/2/2008 6:48 PM (GMT -6)   
Nicole, most people with UC at any given time are in remission and living normal lives. It's just that when people are in flare and struggling, they're much more likely to come here for support and information. So you do get a skewed view of things.

As to why we don't just all have surgery, I'm sure there are lots of reasons. Surgery is final and can't be undone, so we tend to chase remission and have surgery when we just get sick of chasing. The more we're in remission, the less we think about surgery. There really aren't any "useless" organs in our bodies, even the tonsils and appendix have a function. So removing the colon can be fraught with its own problems, even though it does cure the UC by removing the colon.

I've had UC for about seven years now, and have worked at a highly responsible professional job throughout. Sometimes it was hard, but it was something I wasn't willing to give up. I assure you, if I hadn't been able to continue working I'd have had surgery.

Everyone's disease course is different, everyone's perception of how they feel is different, everyone has different priorities and needs in their life. Most of us are able to meet those most of the time. For the past two years, I've been able to do whatever I want and haven't had to think much about the UC. So don't be discouraged or depressed; if what you're reading here is overwhelming for you, you can always take a break and come back later. Remember that most people come here when they're at their worst.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Great Eastern Sun
New Member


Date Joined May 2008
Total Posts : 3
   Posted 5/2/2008 9:01 PM (GMT -6)   
I was diagnosised in 86 but with no period of relief for me, I had my colon removed in 91. I was so happy after the surgery... no more pain, no more running to the bathroom and sometimes not making it.  After surgery I have had several blockages sending me to the emergency room but overall I had been happy (a bit low on Iron) and very active (even traveled around the world.) In 2006 I ended in bed and going to the bathroom every hour, not even having a decent nights sleep. My pouch and connecting small intestines are flarred, inflammation, ulcers, bleeding. The M.D.s think it is because the small intestine was not equipped to deal with stool as the large colon was designed to do and after 15-20 yrs some get these flare ups. I have to put my 'regular' life on hold to deal with this now. Antibiotics have not worked, anti - inflammations drugs have not worked. Now what!!!
When i had the operation I spoke to 4 M.D.s they all told me there was no choice. But there are choices, i know people who have their colon and did not go through the operaton. I know someone who has controlled their UC by practicing Macrobiotics way of life - food and life style.
I can not go back and if there is no choice then yes do surgery, but I agree the large colon is there for a reason and just because the M.D.s do not know all the functions it does not mean that it should be cut out. So I don't recommend surgery since there are lot of risks when you go under and there is no going back.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/3/2008 12:50 AM (GMT -6)   
well i have to say that i don't understand why people dont' just have surgery either, but i didn't have it for along time either, i don't know why, i just didn't want to.
But after being sick for 8 years, and missing alot of my son's life, and losing jobs and just basically being miserable, i decided something was going to change! i didn't want to spend anymore time trying new meds, because even when i was in remission, i was always waiting for the other shoe to drop, always waiting for the meds to quit working, or worrying i would have to take an antibioitc, or get a stomach flu, which would start me up all over again. And so i decided surgery was the best thing for me, and it is so great, i can do whatever, whenever. I have had my ileo for over a year now, and i still find little things everyday that make me glad i did it. The other day, it was being able to mow, today it was having plans with friends and knowing i wouldnt' have to miss them because my stomach wasn't doing good. Somedays it's just being glad i can eat whenever i want.
It is permanent and a really hard decision, i looked at it this way I KNEW i hated my life with UC i KNEW i was miserable, and i realized i MIGHT be miserable with an ileo, so i chose to take the chance, after lots and lots of research, and it was worth it.

**NiCoLe**
Regular Member


Date Joined Jan 2008
Total Posts : 39
   Posted 5/3/2008 6:11 AM (GMT -6)   
Thank you for all of your replies. I realize that the decision to have surgery is HUGE and I do look at it as a last resort. I haven't exhausted all options yet. I have yet to try 6MP or Remicade (which my docs have suggested). Right now I'm pregnant, but as soon as I have the baby, I am going to really start to try to get this thing under control. Thank you again.
Diagnosed in Jan 2007, but had bowel issues for years

Sulfasalazine - 4 pills 2x a day

Hospitalized for 9 days in Feb 2008 (IV steroid)

Was using VSL #3, but it made me throw up (I'm pregnant and nauseous)

Hydrocortisone and Rowasa enemas when needed (which is usually ALWAYS!)


tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 5/3/2008 7:20 AM (GMT -6)   
I have had UC for 6 years and am flaring at the moment did get better but now tapering off steroids and things seem to be getting worse ( those 2 days I experienced with a fully formed BM and no pain were bliss ) trouble is it only lasted for 2 days. My brother had UC although was much worse than me and didn't really get much of a break between flares and he had surgery 10 years ago (before I was diagnosed), I look at him now and he is in fine health playing sports again doing all the normal things and can't remember what it was like to be ill and then I look at my life I never feel like  I can plan ahead, sometimes I wish they would just rip my colon out as it only seems to cause problems for me. I know it is a last resort but something that as the years go by sounds better and better to me. I have just started azathioprine so hopefully I will feel the benefit of that soon.
32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 50mg started 4/08
Steroids 40mg per day


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/3/2008 8:14 AM (GMT -6)   
Tums, if you truly believe you're ready for surgery, get a consultation with a good colo-rectal surgeon. Them just "ripping it out" isn't the way it works, unless you're in a life-threatening situation. It's your body and your decision, ultimately. Medical doctors such as GI's will typically want to try all possible medical treatments before talking surgery, but you don't have to do that if you don't want to.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 5/3/2008 8:43 AM (GMT -6)   
My family keeps asking the same question. Answer: I'm not ready.

I've had UC ten years and had a fantastic 5 yr remission. I know i can get there again. But after that if I flare I will probably have surgery. Maybe.

My GI has yet to even mention surgery even though i have exhausted most meds. My husband and I do discuss it often.

For me, I want to wait until I am done having children (hopefully). I have learned that with a j-pouch there is a higher chance of rupture while pregnant. Jpouch also means csection.

Also I am a bit of a freak about needles, knives, ect. I hate having my skin punctured. The idea of having a stoma even for a little while still freaks me out. I can't handle a papercut let alone a hole in my side. Once I can wrap my head around that I will consdier surgery. If it comes to HUmira and having to give myself injections I would probably choose surgery. I am that big a freak about needles. There is no way I would inject myself, weekly/biweekly or even monthly. I would flare instead. I can handle the remicade needle every eight weeks (though i have been known to hyperventilate).

Surgery is always at the back of my mind but its a big life changing decision.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 150mg Imuran, no more pred after two years!!!!
Prontonix once daily for acid reflux, zofran twice daily for nausea
Remicade started 3/1/08...just had 3rd infusion


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 5/6/2008 10:07 PM (GMT -6)   
Surgery in my opinion should not be the option of last resort and should be suggested to UC patients before recommending them for Remicade and Imuran after Asacol and Prednisone fail to induce/maintain remission. Remicade and Imuran can permanently damage your otherwise healthy organs/systems and can affect your offspring if you want to have children. Also I didn't like the instant cancer to death "side-effect." They are chemotherapy drugs as aunt who is a pharmacist told me.

Check my postings and you can get my story with surgery and my case with UC. To me, after battling with UC for a year...I was the one of the 20% who never went into remission after the initial flare. I got osteoporosis from the prednisone and wasted a year of my life feeling like crap with the medicine route. I got my defective colon removed in February and feel 100% normal again (8-10 weeks to fully recover from surgery 1 of 2 maybe 3. If you can get over having a temporary (for 3 to 6 months) or permanent ileostomy (if J-pouch fails only 5-10% chance) and 2 to 3 surgeries...then go for it. In my opinion, if you can accept the surgeries...then go for it...nothing to be afraid of. I didn't have to do any arm twisting to get it done once I left my stupid local GI doctor. Got mine done at the Cleveland Clinic and would recommend it to anyone with UC who doesn't like the medicines, food restrictions, bathroom confinement, sleep deprivation, feeling like crap all the time, etc.

The big secret that GI doctors won't tell you is that even if you find the right pill/herb/food combo that knocks you into remission and you feel normal, your colon cells are still inflamed and mutating, therefore your risk for colon cancer is 30 times normal 20 years after the initial diagnosis. So why wait 30 - 40 years if your going to lose your colon anyway due to colon cancer and ruin the rest of your healthy organs and keep the pharmacies happy with 20+ years of medicines. I would rather do the surgeries while being younger and have my otherwise healthy organs preserved. That's what made surgery a no brainer for me.

Unfortunately, like me, I only stopped by this forum by chance to give an update on my stage 1 surgery experience. People with the surgery generally do very well and get on with the rest of their lives and leave these forums after feeling normal again...therefore, you don't hear from them that much unless they have complications. I don't think of UC anymore...which is great after it being on my mind 24/7 last year.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily Iron Pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds except Actonel and feel normal again
Aug. 2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 5/7/2008 10:34 AM (GMT -6)   

GISGuy31 I would have to agree with you.  Even though surgery is permanent and not reversible it is not any worse in my eyes then the other options.  With everyone's different state of this disease surgery may not be a proper option because they are able to achieve remission or their symptoms may not be as severe as others of us.

When I was diagnosed five years ago the doctor did mention surgery but just as he was explaining all of the different types of treatments in general.  After that point none of the many GIs I had seen would bring it up and would dismiss that I wouldn't want it because I was too young or that since it was permanent it needed to be a last resort.  But what they fail to point out is that since the medicines only treat the disease the disease is permanent and like GISGuy31 says continues to do damage even if you are in remission.

I am one of the unfortunate people who have never experienced a true remission in five years.  I may get one or two days off without numerous BMs but by the next day it is back in full swing, D and B.  It has progressed over the last five years to a point where I can no longer work.  It is impossible to find an employer that is willing to put me on payroll but allow me to stay at home for the first six hours of work.  I haven't been to one of my children's school events in so long that it is pathetic.

Now the next thing I noticed is that the risk with the medical treatment is something the doctors don't like to discuss.  If they are willing to point out the permanent change with surgery then why are they not willing to let you know the risk with all of the medicines.  One they fail to point out that is associated with this disease is sepsis.  Because of the very nature of UC sepsis is more common.  In my case when the infection started I was on prednisone that had shut my adrenal glands down so my adrenal glands failed to step up and fight the infection.  The infection was more then likely caused by my UC.  Now the problem I had was that all of my systems went into shut down.  I was life-flighted, intubated and knocked out for five days (total of 11 days in hospital then returned the next week with complications).  The doctors only gave me a 10% chance of making it and because of the medicines used to try and increase my blood pressure I have an IV infiltration on my left arm that caused necrosis.  I have to spend time at a wound doctor trying to get the underlying tissue to regenerate and will probably have to have a skin graft at a minimum to fix it.  My hospital bills are approaching $250,000 just for this incident not to mention all the stress that my wife, four children and the rest of my family have gone through.

There are many other problems that a UC sufferer can have also but most people will only find it out through their own research not the GI doctor.  I realize that some people, if given the option, would choose the surgery since it is the only true "cure" without factoring in the complications that surgery can bring.  It may not be right for everyone but it should be out there to weigh the risk against the drug risk.  I have spent some time now researching people who have opted for surgery and have found only one person who seems to not like the choice.  The situation seems to be that of wanting to "cure" it without understanding the consequences.  The person later found out they were misdiagnosed and had Crohn's not UC so still has the symptoms.  It looked to me like a classic case of rushing into a solution.  It should be thought out and milled over.  I don't understand why we don't use the same approach with the medicines.  When a GI says you need to start using a different med does anyone say to the doctor, "I would like a second opinion" or "I want time to research it"?  I would guess no one does, we either find a new GI if we don't like it or more often we just take the meds on blind faith.

For me surgery seems to be the only solution now, but may not be for many others.  I have spent many years, to include prior to diagnosis making changes in my schedule to put up with this disease.  No medicines ever worked for me, my body became steroid dependant, still am currently, the immune suppressors make me violently sick and with all of the attempts the only thing I can temporarily stop is the bleeding but that is temporary (two weeks tops).  I just wish that surgery would have been considered earlier so I would have had time to weigh all the risks of the different treatments.  Maybe I would have been able to get it done and back to work without all of the drama that my family has been up against since the first of the year.

 


  • Diagnosed with UC 2003 (but had sympoms as far back as1993)
  • Just found to have a large hiatal hernia 5/2/08
  • Hospitalized 3/08 for sepsis, 7 days ICU due to complication brought on by prolonged use of steroids
  • Current status = flair (no remission in five years)
  • Prednisone 30mg tappering 10mg every two weeks
  • Asacol 1200mg three times a day
  • Imuran 100mg
  • Protonix 40 mg twice a day
  • Levbid 0.375 twice a day
  • Calcium 600 mg
  • Asprin 81 mg

 


**NiCoLe**
Regular Member


Date Joined Jan 2008
Total Posts : 39
   Posted 5/7/2008 11:03 AM (GMT -6)   
I have really enjoyed reading everyone's response to my question. Especially the last two responses because they seem to see things the way that I do. I realize that the colon serves a purpose and that having it removed is extreme; however, can't that be said about other organs? What about someone who's kidneys don't work?. They have a transplant because it's what they need to survive and improve their quality of life. In my opinion, constantly trying new drugs, suffering almost everyday and missing out of life is no way to live. In this day and age, with all the medical advances, I think it's ridiculous to think that we have to be so sick that we can't work or we have to miss precious moments with our families and friends. I don't think that someone should opt for the surgery as soon as they are diagnosed; however, I think that after several failed attempts to get it under control, surgery should definitely be considered.
Diagnosed in Jan 2007, but had bowel issues for years

Sulfasalazine - 4 pills 2x a day

Hospitalized for 9 days in Feb 2008 (IV steroid)

Was using VSL #3, but it made me throw up (I'm pregnant and nauseous)

Hydrocortisone and Rowasa enemas when needed (which is usually ALWAYS!)

20 weeks pregnant and counting . . . . . .

Prenatal Vitamin and 5 mg Folic Acid

150mg Zantac twice a day (for acid reflux and nausea)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/7/2008 11:36 AM (GMT -6)   
Nicole, would you mind editing your signature down to ten lines or less? That's the forum limit, and blank lines count as a line also. Thanks!

Surgery is definitely an individual decision. I've encountered people who went straight to surgery, and others who hung onto their colons until they were completly disabled. Most of us are somewhere in between. It's all good, because only you can know what's right for you. Personally, I support each person's right to use whatever treatment they feel is best for them.

If you feel you're ready to consider surgery, I'd suggest a consultation with a good colo-rectal surgeon. There is an ostomy board on this forum where you can learn more about ileostomies, and here is a link to more information about the J-pouch, the most common surgery:

http://www.j-pouch.org/

It's important to know all of your options, I think.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 5/7/2008 7:25 PM (GMT -6)   
Unfortunately, you have to be your own doctor when you develop a chronic condition and do your own research. I was surprised out how our medical profession runs. My neighbor summed it up to me the best...calling doctors legalized drug dealers. I would have to agree after my experiences. They feel happy that you die from the effects of the drugs they prescribe you than if you die from the initial condition you were diagnosed with.

Many of the failed j-pouches are because the people were not properly diagnosed with UC or they had indeterminate UC or even Crohn's. For me, I had a second opinion before doing the surgery route because I didn't want to have my j-pouch fail due to me having Crohn's. The tests done at the Cleveland Clinic were another colonoscopy with biopsy, blood work, and a thing they call the "small bowel capsule,"...basically a pill with a tiny camera in it. You swallow it and it takes several pictures of your stomach to your colon. This way they can see if everything except the colon appears normal. The pill camera transmits the pictures wirelessly to a computer you wear around your waist for about 8 hours. Then you mail the computer back with the stored pictures to the CC, and you flush the pill down the toilet when it exits. Pretty cool. My tests came back clean, and I only had an inflamed colon, so therefore they strongly felt that I only had UC.

Nicole, I agree with you. I think surgery should fall into the treatment recommendation after Asacol/Lialda/Prednisone do not work. The other drugs are really harsh on your other organs and doctors should explain "all" of the complications with each drug along with the ones for surgery. Thank God I had access to my aunt who is a pharmacist and she told me everything drug wise. It's amazing that you can live a perfectly normal life without a colon, that seems to be a point the GI doctors will never tell their patients. I think they are taught to preserve all organs at all cost...or people think they need to keep all of their organs even if their body attacks it and it no longer functions. Look at the long list of drugs some people are taking...it makes me sad to see that or the years of suffering that they go through.

Surgery was a crystal clear choice for me and that was just to get off the drugs. A permanent ileostomy is a small price to pay if the j-pouch fails, but your back to normal other than having a bag hanging off your belly which really isn't bad at all.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds including iron pills except Actonel and feel normal again
Sept. 2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"

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