Surgery for uc, yeah or nea

i know this is random, but i was thinking that i wish all the people who are so anti surgery, or even just all the people who still have UC, would sit down and make a list of all things they missed out on that day or that week because of UC, even the small things. Grabbing a quick snack in a drive through, jumping up in the morning and leaving, going out with a friend. The very small things are the things i am most grateful for, i actually cried with joy when i stopped at McDonalds on the way home from surgery, lol. Just because it was so amazing for me to get to do that.
I think that would help them see we aren't just justifying our decision because we can't go back, or trying to push it on people because we think we are "right" and they aren't, just that we want people to be happy and healthy.

summerstorm said...
i know this is random, but i was thinking that i wish all the people who are so anti surgery, or even just all the people who still have UC, would sit down and make a list of all things they missed out on that day or that week because of UC, even the small things. Grabbing a quick snack in a drive through, jumping up in the morning and leaving, going out with a friend. The very small things are the things i am most grateful for, i actually cried with joy when i stopped at McDonalds on the way home from surgery, lol. Just because it was so amazing for me to get to do that.
I think that would help them see we aren't just justifying our decision because we can't go back, or trying to push it on people because we think we are "right" and they aren't, just that we want people to be happy and healthy.

Amen to that!!!!!

I'm the same Summerstorm. I can't understand why people are more willing to take umpteen tablets a day, try a very restrictive diet, always be on the lookout for a loo wherever they go, be in constant pain and, in general live a miserable life revolving around their illness than to consider surgery when their life could be so much easier if they just got rid of that rotten colon!

Shaz032 said...
I'm the same Summerstorm. I can't understand why people are more willing to take umpteen tablets a day, try a very restrictive diet, always be on the lookout for a loo wherever they go, be in constant pain and, in general live a miserable life revolving around their illness than to consider surgery when their life could be so much easier if they just got rid of that rotten colon!

I think it's just fear of the unknown. I know I was scared to death about having surgery. That's why I come here and to the UC forum to try and help people and maybe offer some assurance that surgery can be such a blessing. There are just some who are so close-minded and they are the ones who will end up suffering the rest of their lives needlessly.

     Hindsight is always 20/20.  If I only knew back when I was diagnosed with ulcerative proctitis in 1998 what I would be going through for all those years I would have had the surgery back in 2000.  The surgery is certainly NOT a minor one and the thought of having a major organ removed from your body is very scary.  But, you reach a point where you have to decide whether it is better to have the surgery or trudge on living with a poor quality of life.  I reached the point last year.

     My only regret is procratinating so long.  I have my life back but my bones are so bad from taking that darn prednisone.  Hope the other meds didn't do harm to my system....seven years on 6MP and ten years on Colazal..ugh!

I think the best thing when we see those threads might be to invite the person over here to start a thread for a different perspective. I feel like trying to argue it over there is wasted energy.

I have tried to help out on the UC forum and a certain few over there come along with their wonderful wisdom of "Only have surgery to save your life" and outdated polls from God knows how long ago. It's very frustrating when you are trying to help someone and give them info and real life experiences.

One thing I would like to quantify here, is that people keep mentioning surgery as a "cure", it isn't.You cure an organ by making it function normally again, not completely removing it. I'm not saying that an Ileostomy isn't the way forward for yourself, or many others, but just be aware it is a compromise, with it's own issues, it most definitely isn't a cure.
To my own end, I successfully kept UC at bay for almost 15 years with meds, and it was only in the 12 months or so leading up to my surgery that they stopped working completely. There was some doubt whether or not I could use Remicade, as an x-ray of my lungs showed a possibility of prior TB, and I was assured that Humira would not work. I am still struggling to come to terms with my "new plumbing", and my head is spinning over whether or not to opt for further surgery for j-pouch construction, or continue with the Ileostomy.
To be blunt, I wish I had demanded further tests, to determine for sure if I could use Remicade or not, and if not, tried Humira. I'm now spending the rest of my life thinking "what if?". That's why people on the UC forum urge others to continue down the med route, I'm testimony to the fact that not everyone is happy that they had surgery.
I'm not saying that surgery isn't for you, and I hope you make a choice that's right for you and brings some relief. But I have to interject when I hear people here claiming that it's only those still living with UC that feel that surgery is a bad thing. For me, it was, and I should have exhausted my med options first. So please just be aware that regret can be a possible outcome and be 100% you won't be thinking "what if" after surgery.
If you feel that surgery is for you, then I wish you all the best, UC is a miserable disease and backs many of us into a corner at some point, fraught with tough decisions.

Enigmawrap:It's not generally in my nature to antagonise, but to quote "Wow! Well, I've read on these posts the side of ostomy surgery you usually don't hear about..the BAD side". That being the case, have you not read the MANY posts here on sore skin and leakage? I'm not comparing those particular issues to those of active UC, merely pointing out that there are many posts here that highlight the BAD side of life with an ostomy.
As for Remicade, I know someone with Chrohns who has been given a new lease of life on Remicade, so it does have it's success stories.
However, I will own up to some ignorance, after now reading Allwell's story more closely, I think surgery does look inevitable, as the 6mp/Remicade options have now been exhausted. I did well on Azathioprine for some time, and thought it might have been an option for Allswell, before trying Remicade, but obviously not.
I would still stand behind the view, that for those that haven't tried these drugs, they are the logical step before opting for surgery. Still, we're all individuals, and some may think the risks inherent with these drugs are not worth it. I can respect that, but it wasn't the case for myself.

Blueglass, just to clarify, I did indeed have some of the co-morbidities associated with UC, including eye inflammation and, near the end, excruciating joint pain, in my knees, ankles, elbows, and wrists. I also couldn't hold down food, or even water, and became bed bound before Hospitalization. I STILL wish that I had continued with meds.
My posts aren't dissing surgery, nor are they promoting it. I just thought that they would bring some balance to this thread, and make it clear that not everyone is overly happy after surgery. I guess what makes it difficult for me, is the number of years I had where the meds worked. When they stopped, it was hard to accept. I also believe that I was pushed towards the surgery decision, as living in the UK, the biologicals are a prohibitive cost to our NHS. So I have a suspicion that the advice given to me in Hospital, was as much (or more) to do with cost, than it was my overall outcome. However, that's enough of my rant, as it's somewhat political, and doesn't help the original poster.

Silent Lucidity, that's awful that you were pressured into surgery, understand why you're resentful. Sorry you were so sick too, I know how awful that is.

I think this thread started because people were frustrated w/posts on the UC list where people bring up outdated and inaccurate articles to try to scare people who are maybe interested in surgery before they've even thought about it much .... sort of like what happened to you, but in reverse.

One thing that really helped me was seeing a picture of my colon -- it just looked so horrible, it was hard for me to imagine that it ever could have gotten better w/any med or diet or whatever..... the whole transverse part was shrunken and just kind of dead..... I just felt like it was too late.

I think there's an awful lot that's political and relevant -- who has access to what treatments, what gets researched, what kind of care people get etc.... what frustrated me the most is that so much of the research is on drugs only. I was interested in the fecal transplant and my gi doc was supportive and eager to do research on it, but there's no way he could get it past the IRB at his hospital (and then I got too sick before I could try DIY)..... and forget getting access to the worms.... and researching diet ....and stress.....

For me, I feel like I did the best I could, as did my doctors..... if I didn't feel that way about my doctors, I'd probably be in a similar place as you are..... How long ago was your surgery?

Blueglass, my surgery was in February of this year. Summerstorm, I understand where you're coming from; removal of the Colon does indeed cure the comorbidities. However, and this is IMHO, it does not leave a normal, functioning Colon, hence is not a cure for the UC itself.
I thought I was coming to terms with it all, but have recently been experiencing some depression again, and this thread touched a bit of a raw nerve. I don't know why I'm getting down again, I'm not having any big problems. I think maybe it's just starting to sink in, that I really don't have my Colon, and further surgery for a j-pouch, still won't ever mean "normal" toilet visits again.
Maybe I should be starting a new thread, or hunting out prior threads, on whether to stick with the Ileo, or pursue j-pouch construction. I must admit, I'm starting to seriously consider some sort of therapy to come to terms with it all, as I don't seem capable of dealing with it on my own.

The decisions IBD forces us to make are so incredibly difficult. I have always felt strongly about that little voice in my head that tells me what I should do. It is always the thing that speaks the most clearly about what matches with my personal values. I had not researched much about Remicade or surgery before I was forced to make a decision. I knew a little bit about Remicade from my doctor talking about the general disease progression and treatments, and I had a friend/acquaintance with an ostomy, but I never thought my UC would get to the point of needing either of those until I was lying in that hospital bed and the GI Doc said my options were "Remicade or Surgery". I did not have time for anything else. The exact second that my brain comprehended the words my doctor had just said... that inner voice said "you want the surgery". I was 38, and the thought of getting an infusion of such a strong drug every 8 weeks for the rest of my life felt more daunting for me than the surgery. I didn't think it was worth the risks. However, when my doctors told me surgery would be extremely difficult considering how sick I was and that I should consider 3 infusions of Remicade to heal me up for the surgery I wanted, that did seem reasonable. I thought that small amount was worth the risk. We all have different ideas about what we want for our bodies. Someone else's inner voice in my same situation might have said "No way do I want surgery! I want to try Remicade". I think our biggest regrets can stem from situations where we don't follow our inner voice and are pushed into a decision by someone else. Someone might also have a hard time if they find themselves in an emergency situation where they did not have the opportunity to make a decision at all.

I will add that it was difficult when I had done done my research, made peace with my choice for a permanent ileostomy and was excited about surgery and then people tried to make me second guess my decision at the last minute. That annoyed me to no end, but I always reminded myself that they were just trying to help and had my best interest in mind.

Silentlucidity- I would highly recommend therapy. I had been excited about my surgery, so I had a really hard time making sense of a period of depression that hit me at about 5-6 weeks post-op. I was really sad and couldn't seem to stop crying and feeling completely overwhelmed and down about everything. I was not myself and decided to go to a therapist. I needed to talk to someone who hadn't been through it and who wasn't a friend or family member and could provide a totally new perspective. The therapist taught me some relaxation, anti-anxiety exercises etc. that were very helpful. After the initial visit, the therapist felt I didn't need a second appointment. Within a month, I was feeling much better, but if I hadn't been, I would have gone back to see her again in a second. The emotions that can come with this surgery are intense and sometimes one just needs some help from an experienced therapist to help sort them out and put them in perspective.