HealingWell
Search Close Search
☰

Bette quality of life after surgery?

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/28/2016 3:17 AM (GMT 0)
From my previous post about regrets or no regrets after surgery, it seems the answer to that depends on whether there is an improved quality of life after surgery.

If you are at rock bottom - 15 or more BMs a day and all the ramifications of that - then the surgical outcome is likely to improve quality of life.

But what if you're going to the toilet 6-7 times a day (in other words, not the worst case scenario yet), can't work, no social life and you have reached the threshold of medication you're willing to take ....... would surgery improve quality of life?
Posted 5/28/2016 11:32 AM (GMT 0)
I had no social life due to being confined to my house because of countless accidents and wearing diapers all day. I was scared to leave even for the shortest errands. I ran out of medications so I had no other choices. My quality of life was crap and surgery gave me that back
Posted 5/28/2016 11:54 AM (GMT 0)
When you go to the bathroom your 6-7 times a day, do you have pain and urgency? Is the disease the reason you can't work and the reason you don't have a social life? If so, I think you've answered your own question.
Posted 5/28/2016 12:16 PM (GMT 0)
Blk, I left you a question on my last post about regrets/no regrets if you get a moment to look.

Caren, I get cramps and urgency - urgency to the point where I'm practically housebound because of the unpredictability and it's also for that reason I cannot work at the moment.

I read an interview recently with a surgeon who was asked when the best time would be to decide on surgery. One point made was someone who had not been on steroids or the whole range of immunosuppressants / biologics would be in a better condition to recover from surgery and avoid complications like problems with wound healing.

Of course the decision of when is the right time is up to the individual. On the UC forum someone commented that the best quality of life is achieved in remission and that all drugs should be tried. The same person has now entered a flare out of nowhere and is in a miserable way. They're now unable to work because of the flare. Even their remission was not a perfect time. To live this roller coaster for another 20, 30 or more years doesn't seem to provide much stability or quality of life.
Posted 5/28/2016 4:35 PM (GMT 0)
I wasn't going to the bathroom a ton when I had surgery. I was actually controlling it pretty well by eating very small meals infrequently. Of course, that is no way to live. I wouldn't give up my ability to work, support myself independently, or enjoy a meal. I wouldn't give up my ability to leave the house comfortably. I wouldn't wear diapers. I think there are different types of people, some would do anything, including wearing diapers on a daily basis, and they consider that better than surgery (they have no idea of course because they have never experienced life after surgery). Then there are people who have had surgery and accept their "new normal". Sure, remission is great, but not everyone has it as an option. Some people are resistant to every single medication available. I had great luck with prednisone, but with nothing else. I refused prednisone and opted for surgery. Sure, I could have prolonged things, but what's the point? I didn't want to put anymore toxic drugs into my system. Pred specifically.
Posted 5/28/2016 11:17 PM (GMT 0)
I was going about seven or eight times each morning, but the urgency was severe. I also had bleeding. I missed out on important events, grandchild's 1st Holy Communion, funerals, weddings, etc. The disease was paralyzing my life. I was prednisone dependent and it was killing me! Blood pressure which was out of control and prednisone induced diabetes. So, yes, the answer is the operation, even with the disease now in my anus, gave me back my life. Hopefully, with the help of Cort suppositories (Canasa was irritating me, I will be able to get the disease under control. I really do NOT want another operation if I can avoid it.
c
Posted 5/29/2016 12:11 AM (GMT 0)
Urgency sucks, but apart from that I have never found the number of BMs to make much difference to my life. For years I was going 5-8x a day with the Crohn's, but if that had been literally my only symptom, I would have been absolutely okay with that.

But it wasn't my only system. I had fevers, anaemia, and severe pain. I also developed a stricture and had partial obstructions. Was in and out of hospital in the last two years and became completely steroid-dependent. That all told, I managed for the first 10 years of my disease and wasn't really doing any worse than I am now, although my disease was more severe/extensive back then. Unfortunately it took a turn for the worse in 2011 and surgery virtually became an inevitability from that point.

I had it, but can't claim to be glad about it. The bowels were designed to work as a whole entity; not be chopped up and rearranged about. It's amazing to me how well they do actually adapt in most cases, but not everyone has perfect health or bowel functioning afterwards. Crohn's folks in remission often have trouble with loose stools, gas, pain, etc. for years after a resection.
Posted 5/30/2016 5:31 AM (GMT 0)
I have to draw a line in the sand with this disease and make the right decision for the long term.

I understand that life is best with a colon - but only if it is not chronically diseased. The day I was diagnosed with UC was the day i was officially declared not to have a normal colon and never will. The reality is no drug will change that.

Assuming that I find an immunosuppressant that works and I live for another 30 years into my 70s, the balance of probability is that drug will not last me a lifetime. At some point, UC will flare and it's back to square one. The medical side of that is more time suffering as trial and error of drugs continue. The personal side is more time lost from life with my partner and daughter. And not to mention the side effects of medication over the course of a lifetime.

I have drawn the line in the sand and will not take steroids, immunosuppressants or biologics. I cannot handle the roller coaster ride that would be ahead with taking these drugs for a lifetime. And I draw the line at holding out for a miracle cure.

My symptoms have virtually made me an invalid stuck in my own house. With a baby daughter, I need to be as active as possible and able to plan ahead with some degree of stability rather than worrying that UC might interfere.

Being virtually housebound, unable to work, unable to enjoy time with my partner and daughter, and unable to enjoy the small things in life are distressing. The inability to predict if I can go to the local shop without the sudden urge to go to the toilet is demoralizing.

All of this has not only created instability and a loss of quality of life, but it has stripped my self-confidence. Hopefully life post-surgery provides stability, a capacity to enjoy the small things in life and the confidence to again work and socialize.

My partner has been amazing and supportive. Apart from her days at work, she too is housebound looking after our baby and preparing me special meals. Above all else, I hope surgery provides not only a better quality of life for me but (above all else) the life and future that my partner and daughter deserve. That is my main aim.

I realize a period of adjustment after surgery is inevitable. But I hope the outcome will give me the confidence and capacity to achieve my main aim.

Post Edited (GC4249) : 5/29/2016 11:34:59 PM (GMT-6)

Posted 5/31/2016 3:53 PM (GMT 0)
It sounds like you are in a quandary regarding whether or not to have the surgery. Is that it? Only YOU can decide that. Personally, I think I was in denial just how bad the toll of the disease was taking on my life. I had a GI doctor who would not even discuss the matter of surgery with me. All he wanted me to do was try more and more drugs. I was 52 yrs old when I was diagnosed. Before that, even in my youth, I believe I suffered with IBS. The IBD manifested itself after I was on that Adkins Diet for two weeks. My GI doctor said it was just a coincidence, but no one can make me believe that diet didn't contribute to my symptoms. Well, that is water over the dam. We all reach a point of no return...do we want to just exist or do we want a better quality of life. To live with a bag, or try the j-pouch? Since I was already in my mid 60's at the time of my operation, I wanted the least amount of time under the knife as possible. My surgeon told me I was not a candidate for j-pouch anyway. My only gripe I have about my surgeon is that he left the anus. In his behalf, I did suffer some complications on the table and maybe he just wanted to get out of there ASAP. I have no rectum, which was badly diseased. My colon never had anything more than minor diverticulosis! He took the colon and the rectum because he explained if they just take the rectum the disease will travel into the colon anyway. Well, the disease traveled downward into the anus rolleyes . Oh well, it is what it is. Hopefully, the cort suppositories will get it under control. In the meantime, my quality of life is excellent, I am not in discomfort and I don't use the anus anyway.
Posted 6/1/2016 11:32 AM (GMT 0)
I love my life since I've had my ileostomy. Pre Ileo: I was running to the loo at least 15 times a day and hoping I made it on time, at the doctors at least every couple of weeks, in hospital several times a year, several blood transfusions, restricted diet, umpteen dozen pills a day, colonoscopies, you know the drill. Post Ileo: none of that rubbish :)

I've travelled the world (I'm an Aussie), eg Thailand, Singapore, Hong Kong, UK, all over the USA and most of Australia without a problem. I went to the UK and USA by myself for two months visiting ostomate internet friends. I've finished school, worked full time, ridden elephants and camels, been rapelling, camping, etc and now am the clinic manager of a not for profit hearing clinic. I very much doubt I could have done most of that comfortably without my ileostomy.

Only you can know when you have reached your limit. When UC rules your life and makes you so miserable that you have no life, then you're probably about there.
Posted 6/1/2016 2:58 PM (GMT 0)
I cannot speak for jpouches, as I opted for ileostomy, but I can say that my QOL is the same as life *before* I had UC, not lower. I am completely unrestricted in diet and physical activities now. Biking and playing a lot of tennis for example. Convenience issues regarding changing my appliance and emptying the pouch are, for me, so inconsequential as to be negligable. I certainly do not go to the bathroom any more than a "normie." surgery recovery was a tough few months because of one re-opened wound and an infection at that wound, but the relief from UC type pain was immediate. I thought of myself as some sort of hero for resisting surgery for ten years or so but in hindsight I feel that I was a fool living in denial. Have had the new plumbing for over 3 years, it is very liberating.
Posted 6/1/2016 3:01 PM (GMT 0)
Shaz...YOU GO GIRL!!! You are a living, breathing testimony for ostomates. While, not quite as active a life as you have lived, I feel I have been given a second lease on life. Who would have dreamed our youngest daughter would have ever married at age 35 and given birth to our youngest grandson at 37! We watch our little 21 month old Santino four afternoons a week from only 2 to 5 pm, but OOOOOH those three hours. He is a joy and the light of our lives. Had I not had that operation I know for a fact I wouldn't be able to babysit him OR if I would even be alive today!
Shaz, I have a friend from my school days (over 50 yrs out of high school) who lives in Bathurst. She moved there shortly after marriage to a man from London. Whenever she would visit the states in recent years I would kid her that she gave up her Joisey accent for that of an Aussie.
Posted 6/12/2016 2:56 AM (GMT 0)
GC4249 - Well.....my surgeon asked me about my BM's, and I said 4-6 a day..and he said "well, I don't think I can improve your quality of life with surgery...." DOH! After we talked, he realized life wasn't so good after all - 20 mg/day prednisone, cataract surgery, osteopenia, rosacea, ...you name it, prednisone gave it to me good....I won't say your life will be like it was before you ever had a UC symptom, but it will be much improved, hence higher quality, after surgery....it will take getting used to...there are some logistics to it (I don't know if your getting j-pouch or permanent ileo). For those that had surgery when they were kids - ala Shaz - they are used to it as adults...I'm still getting used to it to be honest (5 years on)...but, I can work, enjoy the little things in life, and only worry about the toilet when the bag reminds me it's there.
Posted 6/12/2016 3:11 PM (GMT 0)
GC, how are you doing these days? I am wondering if you've taken steps to meet with a surgeon. I think you should, even if you decide not to go that route, it's good to get some perspective. It sounds like you're pretty dead-set against a future of uncertainty, which UC was for me, though it isn't for every UC-sufferer - so I do not want to get that into your mind. People with very mild cases sometimes have long-term results with medication. Mine was always very virulent and unresponsive. I had a little birdie in the back of my mind that led me to believe surgery was in my future early on. Sometimes I regret not doing it way in the beginning when I originally began struggling with medication "not working". Back when I had the king of insurance plans and a very lenient schedule... Things have worked out for me fortunately. Yesterday I was out and about all day, no need for the toilet. I am no longer chained to the toilet.
Posted 6/13/2016 1:05 AM (GMT 0)
Nssg, thanks for checking in. I actually have surgery scheduled for next week on the 23rd. At the end of the first meeting with the surgeon, he admitted that he first thought I was of potentially unsound mind because I was asking for surgery without first trying all the medications! After a lengthy consultation he could see the reasonableness of my choice. Of course, he mentioned that there's no 100% definitive way of ensuring UC isn't Crohns .... he explained that the appearance and pattern of the disease as well as histological features leads to a diagnosis of UC. Even the lack of granulomas in biopsies was no guarantee it's UC - apparently about 70% of Crohns patients don't present with granulomas in biopsies. Something to keep in the back of the mind, he said!

In any event, the frequency, urgency, cramps etc. are disabling. Apart from visiting the doctor - which runs the risk of an accident - I'm housebound because of the disease. I have zero quality of life now. I cannot say I'm looking forward to surgery but even if I can get out of the house after surgery that will be an improvement.

Maybe I would be lucky enough to take the first immunosuppressant drug and it works for the rest of my life, giving me a good quality of life and no side effects. But given I have another 3 or 4 decades of life expectancy, that scenario seems improbable. What is more likely in that 30-40 years are the ups and downs of the disease itself, a slippery slide from one drug to the next as each flare becomes more resilient, and a lifetime of suspended terror (even during remission) always concerned by the sight of the first soft stool or spot of blood. And that's assuming the drugs don't have any side effects and I avoid the risk of colon cancer over such a long period of time.

For me, that is too much uncertainty. My life would essentially be controlled by UC, so I've drawn a line in the sand and - fingers crossed - I hope surgery lets me regain control of my life!

Post Edited (GC4249) : 6/12/2016 7:08:14 PM (GMT-6)

Posted 6/13/2016 9:53 AM (GMT 0)
GC4249-
Good luck next week.....Wishing you a speedy recovery!
Posted 6/13/2016 10:44 AM (GMT 0)
Thanks for the warm wishes.
Posted 6/13/2016 11:09 AM (GMT 0)
GC - looks like you've made a decision - good for you! Give yourself time to heal after the surgery - lots of time.....

w/regards to your post about your Dr. saying "could be chron's..could be UC..."...I had a genetic test way back when, it could be better now but I just don't know. Anyway, my GI told me the test stated "..you have a 70% chance that it's UC you have..." Not exactly perfect, or even confident with those results. basically, the colonoscopies and visual/lab tests of samples strongly indicated UC. There are folks on here who have been misdiagnosed, and others in the world misdiagnosed because these two diseases represent themselves with similar symptoms, though causes are completely different - that's a story for another day.

Again, best wishes and blessings on your surgery.
Posted 6/13/2016 1:06 PM (GMT 0)
You paint a very grim picture of life with meds but if it was that bad for everyone, don't you think almost everybody would be choosing to have surgery?

I'm not trying to change your mind - your decision is absolutely none of my business. But I don't agree with the grim picture you give of IBD unless you have surgery. It wasn't that bad for even me until one or two years before my first surgery and I really was a severe case.

Post Edited (NiceCupOfTea) : 6/13/2016 7:09:16 AM (GMT-6)

Posted 6/13/2016 1:22 PM (GMT 0)
Best wishes with your surgery, I hope it gives you your quality of life back.

I understand you wanting to take control. I tried many more drugs than you did but we all hit our point. When I requested my ostomy back I was of similar thought as you, I was done with the ups and downs. Even if the xeljanz worked for 5 years I couldn't deal with another flare whether it was in 1 year or 10 years I was done!

Good luck next week!
Posted 6/13/2016 2:14 PM (GMT 0)
I wish I would have had my surgery much sooner. I suffered for a long time, and tried all the meds I could. I had no idea how great I would feel and how wonderful my life would be, disease free. You're right...UC did control my life and in many ways, the lives of my husband and children. NO MORE!!! 😀

Wishing you the best of luck with your surgery, and a fast and easy recovery.
Posted 6/13/2016 2:42 PM (GMT 0)
Thank you to everyone who has sent me their good wishes!
Posted 6/13/2016 8:48 PM (GMT 0)
I am scheduled for surgery this Wednesday, June 15th. I think either decision surgery vs medication is a risk. You are taking a risk on quality of life. Sometimes, medication works really well. However the reality, for me, is that for the last 4 years I have tried medication after medication with no sign of remission. I have tried every diet under the sun with no sign of remission. I could for the next 4 years yo yo in and out of mild time and severe times. And, I would live in constant fear of when will my next emergency be, am I going to make it across the grocery store to the bathroom, and missing every moment of my friends and families lives, because I am trapped in my own home.

My life IS grim with UC and I am only 25. That is my reality. I think everyone has their own choice to make. I think surgery is a great option for those who see a grim future with medication. You can take the risk of trying a new medication, but the side effects alone are sometimes worse than the disease itself. Or, you can take the risk of surgery which is a big step. You can't just grow a new colon, or put the old one back.

For those people that are struggling in the beginning with medication, I think are most likely going to continue to struggle with medication. And, surgery is a GREAT option for those people. So, many times you hear that someone wishes they had done it sooner. I am listening to those people and am trying to learn before I get into my thirties and have missed out on so much. I want to live my life!

GC4249- I wish you so much luck and healing with your surgery! I'll be right there with you!
Posted 6/13/2016 10:41 PM (GMT 0)
I just see the other side of surgery with Crohn's. Nobody I know with Crohn's who has surgery ever really waxes lyrical about it, and now I know why. Very obviously, Crohn's comes back, I know, but I'm talking about people who were, or who still are, in a surgery-induced remission.

I've also seen some people with UC have a bad surgery outcome. I'm not saying it to put anybody off, I'm saying it to be realistic. It happens. It probably won't happen to you, but it will happen to somebody - it has to. Not everyone can have a fairytale outcome.

If you do, you ought to appreciate it because the other side of the coin is hell.
Posted 6/14/2016 12:04 AM (GMT 0)
Imadcock42,
Good luck to you as well Wednesday. Be patient with yourself during the healing time. It will be my 6 year anniversary on June 25th of my j pouch surgery. I'm so happy I had this procedure done.....I'm one of those people who say I wish I did it sooner. Hope you have a speedy recovery!
✚ New Topic ✚ Reply
123