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Posted 1/13/2012 12:15 PM (GMT 0)
I came across this question at another forum and thought the answers were interesting. Paraphrasing:

"Do you regret trying or not trying all of the meds (particularly biologics) before surgery or having gone through surgery does it give you peace of mind that you'd done all you could to save your colon? I know hind sight is 20/20 but are you glad you had surgery when you did?"
Posted 1/13/2012 12:19 PM (GMT 0)
I know, for me, my parents were initially against surgery even after all medical options had been exhausted. They were even prepared to take me to the US and UK (we're Aussies) to see if any new treatments were available there (there weren't and I never did get to go on that trip - but did later on in life with a much more pleasant agenda). "But what if a cure is found, what if she hates it and blames us for having to wear a bag for the rest of her life?" Eventually, they made the hard decision to let me have surgery (I was 10 years old) and I'm so greatful they did. I LOVE my life now :) They don't regret it either :)

Personally, I wish I'd had surgery sooner. Living on 20+ pills a day, not being able to go anywhere for fear of needing a loo urgently, endless doctor and hospital visits, etc is no life for a kid. I know, I accepted surgery a lot easier than my parents did. My only question when told about surgery was "will I still be able to go swimming?" When told I could, I said "go for it!" and have never regretted it.
Posted 1/13/2012 12:33 PM (GMT 0)
Life was easier with a temp ostomy for me. I went into my dx - rectal cancer - w/o info, I was shell shocked, 2 doctors I've seen since my original surgeon operated on me (who did a bang up job I'm told), have implied they would have taken different surgical approaches.

I remember one late-late night, before my takedown, couldn't sleep, hubby still awake and I asked him if he would keep a colostomy or have it reversed. You probably know what his answer was - of course have it reversed. People just assume a bag is a horrible life.

But it isn't. Life was more predictable back then for me.

We have lousy insurance now and I don't want more surgery anyway. So I live w/o my sigmoid and spend a lot of time in the bathroom.

Be proud of your ostomies folks, hard to believe but some of us who had one sometimes miss having this easier way to relieve yourself.

I often joke around too - I know, I'll just give up food! Ach, who needs it....

Of course I am usually joking but there's a voice way, way back inside my head that asks - do you really need to eat that much? I have wondered if I should try liquid meals.....wonder if they would convert to urine? That part of my body works great. LOL

Post Edited (Marsky) : 1/13/2012 5:36:42 AM (GMT-7)

Posted 1/13/2012 12:48 PM (GMT 0)
Well, I tried 3 different biologics, and sometimes I regret that I did that instead of having surgery earlier. But I wasn't ready....

I regret the amount of prednisone I took and the amount of time I spent being really sick.... but again, not too much, as I did the best I could

I tried so many things..... so I don't really regret not trying more.

I think what I truly regret is how mean I was to myself for much of the disease. I didn't accept that I really had a disease, thought it was minor and I should be able to fix it myself, and got upset when I couldn't. I made a lot of things worse for myself ..... but again, there were reasons why I was that way, and all I can do is treat myself better now....

What a huge responsibility your parents had..... so glad that it worked out all around. Like a lot of the parents here (well, I'm more of a step parent), I think it would be so much harder to deal w/these decisions for a kid than for myself..... so grateful that the main kid in my life is healthy....
Posted 1/13/2012 5:15 PM (GMT 0)
I am glad I had surgery instead of graduating from azatheioprin onto the harder drugs. Pred had stopped working and the aza was also doubtful. My case was more complicated than being about drugs, because I had a stricture, which is unusual in UC. It was benign, but my doctor thought it was going to close down on me before becomming malignant. The main factor in my decision to have surgery was that my UC was very clearly becoming worse, not better, and I didn't want to put myself through the next flare-up.
Posted 1/13/2012 8:00 PM (GMT 0)
I wish I had had the ileostomy done sooner even though it was done only 3 years after being dx with the CD when I was 20 yo and am now 40 yo. I still went through 3 years of hell of pred going up and down in doses like a yoyo, trying all the drugs available then and missing out on my teenage years with my friends and looking like walking death I was that pale and thin. I have never regretted the ileo, not even once or after my multiple surgeries since for abscesses around the stoma. For me having the bag gave me back my life and after it was done lived life to the full and glad I did as now it has been somewhat curtailed since developing God knows what (Lupus test came back positive but saw rheumy yesterday and he was a complete ass again and said positive test is no indication and that it was fibromyalgia even though my tender point test was negative he still insists it is fibro but doesn't want to see me again or prescribe any meds! So he basically made me feel like I am making it up as I don't fit his standard and to get on with it on my own, arghhh. Thank God I have a brilliant GP who will do whatever to keep me still able to work, if it wasn't for her think I would curl up in a dark corner and cry. And breath.....)
Posted 1/13/2012 9:20 PM (GMT 0)
     Just returned from Atlantic City a few hours ago.   We love our overnight stays at the casinos.  Before my operation, June 28,2010, our trips were very limited and most were cancelled because of my bathroom "issues".  Not a pleasant way to spend my golden years.  Just this morning, ironically, my husband said to me, "If the subject of having a permanent ileostomy were brought up by your GI doctor ten years ago, you would be horrified."  He's right, I would have been horrified!  However, now I have NO regrets.  I ran the gamut of meds and realized they were causing more harm than good.  If the Remicade continued to work, I most likely would still be on it.  But, it didn't work and neither did Humira.  I suffer with bad pain in my limbs.  I have osteoporosis (thank you prednisone), but often wonder if any of the other drugs I took during those twelve years I suffered with UP contributed to that symptom, probably so.

    :-)

Posted 1/13/2012 9:28 PM (GMT 0)
I have no regrets trying all the meds. It gives me peace of mind that I did all I could before having my colon out. Having said that, knowing what I know now, I wish I would have done the surgery a bit sooner though.
Posted 1/13/2012 10:35 PM (GMT 0)
I think I had mine at just the right time.  I had the disease for 14 years, and although I was on a lot of meds, I did have periods of decent quality of life . . . almost where I forgot I had the disease. 

My last flare was one that I wasn't going to recover from, which is a GOOD thing because there was severe high grade dysplasia in my colon as outlined in the pathology report post-surgery. 

I don't regret my decision to have the surgery.  I enjoy food, and my diet was so limited before. 

They only thing I sort of regret is the permanent ileostomy.  I am now dealing with pyoderma gangrenosum and that wouldn't have to plague me for long if I could have the ileo reversed. 

We'll see though.  The surgeons where I live are not top of the line, so I wouldn't trust them to construct a j-pouch, the ones who are good don't take my insurance, and I don't have thousands to put toward Out of Network costs at my family's expense. 

Ahhh, six to one, half dozen the other.  Most of us were cursed with a crappy disease and all of our options sucked. 

Posted 1/14/2012 2:04 PM (GMT 0)
Christine....hubby's last bone scan (4 years off prednisone and using fosamax, calcium supplements) has greatly improved his osteopena. It is out of that negative range...even though it is borderline it is an improvement nevertheless and hopefully you will find that too down the road.

My husband suffered 5+ years. (Prior to that it was basically manageable) Days after the surgery he was saying he wished he had done it 2 years previously when his Mayo Clinic Dr was broaching the subject. But he was not truly ready and needed to try everything out there to see if he could get into a remission. No success and finally he gave in as he just couldn't do it any longer...sick of being sick and missing out on so much socially. It's been almost 13 months and life has completely turned around for him. (Dealing with a sore/injured knee and seeing the ortho Dr next week but that will hopefully be an easy enough fix.)
Posted 1/14/2012 2:56 PM (GMT 0)
I spent 10 years being sick after I was diagnosed at 18 (and was sick for years before the diagnosis), and tried every drug I qualified for. I literally had no choice when they said I needed surgery, and would probably not have opted for it had they given me a choice. That being said, I never regret my surgery. I now wonder if some of the drugs I took had side effects that haven't shown up yet (cancer, etc). So I'm kind of the opposite...sort of regret the drugs. But at the same time, if I had had the ostomy earlier, I don't know if I'd appreciate it as much now. It's hard to say. The bottom line is, I'm so happy to have this and I try not to worry about the past, since I can't change it anyway.

If it weren't for the complications giving me anxiety (worrying about possible obstructions, complications, adhesions, etc.), as long as my ostomy works right (no leaks!) I'm 100% happy with it. Don't miss pooping at all.

The ironic part is I always distinctly remember when I was 18, right after my diagnosis, and I was having diarrhea like 10 times a day, losing so much blood, on prednisone, etc, and someone asked, "If you had to live the rest of your life like this would you consider a bag?" and I was immediately like, "NO!" But now you couldn't give me anything that'd make me go back to living like I did then.

Good post, Shaz.

Posted 1/14/2012 3:59 PM (GMT 0)
I have just a few regrets. I regeret nost making the doctors listen to me. I kept on telling the docotrs that something was really wrong with me. They would test my blood and things but could never find anyting wrong. Over and over again I went to the doctors. Got to the point of where I thought that I was going crazy. Was tolds that it was all in my head. Lived like that for years. I got married to a wonderful person. He is serving our xcountry in te army. Anyway, after we arrived on base, I started to go down hill. Sick on and off all of the time. I woulld be fine one minute and sick as a dog the next. I finally got one day to the point of where I could not stand up anymore. In so much pain and so sick that it was not even funny. They finally decided to do an x-ray on my stomach. I had to drink this stuff that made me sicker than I already was.So to make a long story short, I had to be admitted to another hospital. They found out that I have diverticulitus and that I had an abcess in my stomach. I stayed in the hospital for 1 week on heavy antibiotics and pain killers. I went home for a week and then the docotr called me to see how I was feeling and I told him that I had nstarted being in pian again and was sick again. He told me to come to the hospital as soon as possible. I went to the hospital and the next thing I know is that they are scheduling me for emergency surgery. My intestins had ruptured . They took out 2 feet of my intestins and put a iliostomy bag in as well. Still hurting from the massive surgery but am feeling better that I have in a long time.
Posted 1/14/2012 4:07 PM (GMT 0)
I'm the one that posted this originally on jpouch.org. Thanks Shaz for reposting it here - it's helpful in some ways to hear everyone's story and to realize that most people are happy with the surgery whether they tried everything or not. FYI, I have a six year old with UC - been battling it for two years and now have to decide on remicade vs surgery. It is a horrible position to be in. And of course, everyone is different and no one knows what our outcome will be.
Posted 1/14/2012 4:48 PM (GMT 0)
I honestly regret trying the drugs I did. I regret that I missed so much of my life and my sons life. Not even because I was scared or didn't want surgery, I just didn't know it was an option. The only time it was ever mentioned to me I was 20 and my gi at the time said, "you don't want a bag, they are for old people". That's all it was ever mentioned. When I got a new gi and found out about surgery from a message board, my gi said yes that's a step you can take or try remicade. Against my better judgement, and what I really regret, is trying remicade. It worked for about 3 months but I was never happy always nervous, then when if failed it was awful! In hindsight I would have had my colon out in may 1999.
Posted 1/14/2012 8:08 PM (GMT 0)

I have no regrets in NOT trying any of the biological drugs.   I had a ''gut'' feeling that they would only work for a short time plus I had a stricture in my rectum that was periodically being streteched.  This lead to increased fecal incontinence every time it was stretched, and I don't think any of the drugs would have helped that.

My ''old'' GI highly recommended Remicade for me, but I refused and opted for surgery.  Turns out, I was correct and my surgeon said that Remicade would not have helped with my badly diseased colon.

My only regret is not getting my permanent ileostomy in 2010 when I had 10 inches of my colon removed due to a stricture.  At that time, I was unable to have a colonoscopy due to that stricture, so we did not know that my colon was in such bad shape on the other side until I healed from the surgery and a colonoscopy was able to be done.  That is when it was determined that I had 2 choices, Remicade or surgery.

At my age of 57, I did not want to risk the side effects of such powerful drugs. I am also Diabetic, my dad died with Multiple Myeloma, etc.

So, on July 14, 2011, little Lillie was born and I got my life back :)   My ''new'' GI says she would have done the very same thing.

I am also relieved to know that I will never have another colonoscopy, barium enema, and never have to worry about colo-rectal cancer ever again. 

Posted 1/15/2012 12:35 AM (GMT 0)
im definetly happy with what i choose but my journey isnt over yet the j-pouch will be the last step if that goes wel i am content with happenies. Buttttttt when i was first diagnose part of me feels i could have prevented what happened i had blood coming out of my stool for 1 good month before my mom realized me pooping 9 times a day for 30 min. i feel like if i had some knowledge about the human body or the whole you can have a period and bleed in the front but not a period in your poop lol i would have probally been able to get treated better without the hardcore medicine but then again it probally would have happened in the near future!!!!
Posted 1/15/2012 2:46 AM (GMT 0)
killcolitis,

I was at the same crossroads you are at back in November, and really had a tough time with the decision. It was surgery or remicade for me, and I was not leaving the hospital until I made my decision (not well enough); I was not even responding to high doses of intravenous salumedrol at that time.

What made my decision was the fact that I don't know much about the harmful effects of remicade on my body, and I knew I had a much better chance of being truly well if I did get the surgery. The other thing was that my doctor told me that the remicade would probably not be a forever thing anyway, and I may be in the SAME (hospital) boat again in another couple of years.

Since I felt like I was literally walking through hell at the time, I decided that I had absolutely had it with the disease. I thought both of my options sucked, and I would rather have not made a decision like that at all, but based on what i know to be true now, I definitely made the right decision.
Posted 1/15/2012 11:59 AM (GMT 0)
Shaz,
At the time I agreed to have surgery, I had no regrets, because I knew I had done everything possible (meds, supplements, and special diets) to try to "save the colon".

Now, looking back, my only regret is that I didn't do any research about surgery or ostomies while I was sick. Had I done that, I would have found this site and your site (www.ostomates.org) and after reading people's testimonies about how much better they feel without a sick colon, I probably would have agreed to have surgery much, much sooner!

Your website was the first site I found when researching ostomies after surgery, and it helped me so much. I'll never forget laughing so hard at some of the names that people came up with for their stomas! It was so healing to find humor in having an ostomy, instead of sadness. Thank you for what you've done to help people from all over the world cope with having an ostomy. If you haven't already received one, you deserve an award! :-)

Cecilia
Posted 1/15/2012 1:58 PM (GMT 0)
GREAT thread :-)

I regret missing so much of my daughter's first 5 years! I did try many different drugs and was in the 1st Remicade study (loved it but developed antibodies) and now those what ifs always go through my mind sad I won't let them take over the awesome life I have today...

My first ostomy was from complications and was emergency. My docs always prepared me that it was probable at some point due to my obnoxious disease and I was so sick I didn't care when it did happen. I was so excited when I had my reversal surgery BUT I was more excited when I elected my second one! I know there won't be a cure in my lifetime (specialized treatment for each patient, yes!) or the magic pill...but we do have this great surgical option.

When I meet patients who are contemplating surgery I suggest a temp ostomy...if they have the time...because it really shows you how amazing life can be. I wish I had found this site BEFORE I had my proctocolectomy...not during my recovery from it cool
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