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I am scheduled for a consult with a surgeon at Cleveland Clinic in two weeks to discuss and schedule the surgery.
I am fully on board with having surgery. Let me explain how I ended up with making decision to have a consult for surgery:
I was diagnosed 2002. I took Asacol for a few years (slowly had to increase the amount). It stopped working while I was at 3 pills, 3 times a day. Doc then prescribed prednisone to see if we could achive remission again. In 2007 I started Lialda. It worked for a bit but was never totally in remission. Always had flares (not daily, but maybe twice a week). I'm always anemic and tired and most of all, worried about 'accidents'. By August 2011, I was put on Prednisone again which didn't put me in remission but did assist in that there was less blood, more formed bm's, less mucus, more control over accidents.
After the Prednisone attempt, I started back up with the serious flares. Very bloody, not able to hold bm's, couldn't make it to the bathroom alot, when I did make it, I was in there for sometimes 25 minutes, and worse than that was the pain from what felt like spasms in my colon. She prescribed something for the spasms but it didn't make the other symptoms any better.
June 2012, doc recommended Imuran. Was good at 1 pill a day for two weeks, but when I started on the 2 pills a day, I immediately starting having serious pains in stomach. Doc immediately stopped the Imuran and the stomach stabbing pain stopped in two days. I was off Imuran for about 3 weeks then started it back up (this was my doing because I noticed a SERIOUS DIFFERENCE in my UC symptoms. Symptoms were resolving! I wanted to give Imuran another try but once again, after taking 2 a day for two days, I was in so much pain I thought I would have to go to ER. I went back to doc and she recommended Biologics (Remicade and some others). I don't want these. Nonetheless, she explained that it stops working in 2/3 patients in short period of time. Regardless, I do not want those types of drugs in my symptom. It was bad enough to allow Imuran.
Now, with all of this being said, am I really ready for surgery? I've read stories of some seriously sick people. They have it sooo much worse than I do. To top it off, after I refused the Remicade and told the doctor that I just wanted surgery, she told me "I have alot more patients that are worse off than you". So that has me wondering now. Does she mean that I should not be considering surgery? Does this mean she feels I should try the Biologics? That I'm not bad enough internally to require surgery. I do know that my UC only affects the lower left side of my colon.
Please give me your thoughts... Should I be embarrassed to be seeing a surgeon when I'm apparently not suffering as much as other patients or that my colon isn't in as horrible condition as others?
Thanks for any input....
Original Post
quote:
Should I be embarrassed to be seeing a surgeon when I'm apparently not suffering as much as other patients or that my colon isn't in as horrible condition as others?


Absolutely not. Most people that have not experienced rapid deterioration do not know how quickly you can go from being as you described to being deathly ill. It can happen in two months. You want to have surgery when you are still healthy, not when you are on death's door. Your chances for a good surgical result are much better if you are healthy. Too many people wait until they have severely deteriorated before having surgery and as a result, experience a much rougher recovery than they otherwise would have experienced.

In my case I went from being in decent shape to a severe deterioration in a matter of months and when my colon finally came out, my surgeon told me it was practically dissolving in his hands and could not have waited any longer. I would have had a perforation before I ever got cancer, even though I had dysplasia on my last colectomy and this led to my ultimate decision.
Well it's good you are not on death's door. You want to be as healthy as you can be going into this surgery. You will have a much easier recovery. I WAS on death's door going in. I had complications after my step 1 that I bet I wouldn't have had (well who knows) if I was healthier. As hard as my recovery was, I'm sooooo glad I had this surgery done.

It's really easy to second guess yourself if are not feeling poorly. It was a no brainer for me since I was so sick. I couldn't wait to get my horrid colon out of me.

I do not have much faith in the biologics. They seem to work at first but then quickly lose their effectiveness. Remicade failed on me. In my opinion, when you have exhausted most of the drugs, surgery is the better option. No more UC and no more drugs. And you can actually enjoy eating again! Definately go for the consult and good luck with your decision. Smiler
quote:
I do not have much faith in the biologics. They seem to work at first but then quickly lose their effectiveness. Remicade failed on me.
Neither do I, nor do I have much faith in what they'll tell you to do next when it comes to J Pouch surgery. It's a big gamble and quite a compromise too. While you still have your colon in you why not try some alternatives. You've got nothing to lose, since J Pouch surgery is your final and last decision. Check this thread out for example.
FECAL TRANSPLANT
I kind of agree with exhausting all other alternative options. Although surgery was highly recommended for me (I was hospitalized with a severe flare and I am steroid resistant), I always wonder what if. I'm actually doing very well post takedown but it's still overall a pretty traumatic journey. I was just so sick of being sick and felt like UC had robbed me of so much of my life. I hated living in fear of another flare and the hospital stays were so emotionally taxing.

A major factor in my decision was being absolutely terrified of the risk factors for the harder drugs. My best friend is a nurse practitioner at Sloan Kettering. While it is indeed rare, she has cared for several patients with immunosuppressant drug induced cancers. I have small kids, lost my mom to cancer and it was a risk I was just not willing to take. But these are my own fears and TONS of people do well on these drugs. As I see it though, when you are that small percentage, what difference does it really make.

My advice is to take your time making this decision. Yes, meet with the surgeon but also try everything out there that you possibly can so that if you do decide to go the j-pouch route, you are very confident in your decision.

Good luck!
Casie130,

I agree with Marianne. I had UC for over 8 years and like you, I would feel good for a small period of time, but then unbearable. I couldn't stand it As time went on, my symptoms got worse and worse. I couldn't hold it in either. There were many times just driving home from work, I had a problem trying to hold it in before I got home. I would go just before I left work, drive for about 20 minutes or so, then would have to stop at a gas station or a restaurant just to use the bathroom. I am surprised I was lucky enough to hold it in before I got there.

For the last 6 months, my surgeon tried to tell me that surgery would be my best option. But I was afraid. So he sent me to a GI who scoped me and said that I would have to be hospitalized for at least a month on a high dose of Prednisone (and I hated that drug) and other drugs. I said will that cure it? He said no, but it MAY put it into remission for a period of time. So when I got home, I took stock into my life and told myself that going to the hospital with all these drugs will just delay the Inevitable.

So I called my surgeon to schedule my 1st surgery. After going through pre-testing, and being now psyched to get this over and one with, my surgeon called me to delay the surgery which really ticked me off as I didn't want to wait any longer but the reason he told me that is because I had lost so much blood, I would require a blood transfusion of 2 pints, that is how sick I was.

That being said, Marianne is right when she said you should be as healthy as you can going into this surgery. I wasn't. I was a very sick person and my recovery was longer. I do get my flare ups with Pouchitis which seem to take a long time to get under control, but it was better then going through the time period when my UC was out of control.

Its your decision to make, but I would ask myself a question, "Do I enjoy living my life the way it is with my UC out of control?" "How is my quality of life?" For me, the answer was the same. "NO!"

Being scared is normal and it is a big decision to make. I pray that you are guided by God to make the decision you need.

Rocket
DJBHusky- Yes, that's what I worry about... I know how quick illness from UC can come on. AND, now that I've I take all medications (other than the transfusions of Remicade) and find that none work, I feel this is my only choice because it's just a matter of time now. Sadly, I've read about too many people who've waited too long or actually never had a chance to choose because they were just SO ILL. You made the decision just in the nick of time! UNREAL! Thank you so much for the information and helping me get over my worries.

Marianne- I worry that I will be so sick that I could have horrific outcome if I do have surgery. I definitely am going to the consult. If he lets me, I'm going to schedule the surgery for early November or possibly late October (before I start getting sicker). I just wasn't sure if my GI doctor was trying to tell me that I should be embarrassed since my colon is apparently not in as horrible of condition as some of her other patients. I don't know... my mind just goes. All I know is that I am a peace with my decision to schedule surgery. I'm tired of UC determining what I will and will not do that day. Just today I was in my closet deciding what to wear. I grabbed my white pants but then put them back because I know in the back of my mind that today could be another day where I don't make it, or a little 'stuff' escapes before I get into the bathroom.
Thanks so much for your input.

DogDay- I think my decision is made. It's J pouch surgery for me. I'm done with drugs and all of the experimental stuff.

vstRN- I'm so glad its been good for you since the takedown. I know it will be a traumatic journey. But it can't possibly be more traumatic than having my life be ruled by UC. I'm so tired of being afraid to leave the house or afraid of 'accidents'. I feel confident in my decision but am still understandably nervous.

Sue!! You helped me on the Healingwell forum ;o) I took your advice and posted some of my new concerns here in the j-pouch forum. AGain, I think surgery is my only option as I'm out of options on drugs. AND, I will NOT take Remicade or those other biologics. I just believe it is inevitable so why not do it now while I'm still young and hopefully healthy enough. In my mind, I'm still aiming for late October or early November if he (Dr. Stocchi) will have me! This will also help me out with my job. As I will have more leave built up by November AND in January will roll over with more leave to use.

Rocket- I agree with Marianne too!!! Driving home from work is the absolute worse time for me. I don't know why, but that's where I get caught too!! It's like whatever I had for lunch is SCREAMING TO COME OUT by about 4:15pm! This is where most of my accidents happen! I'm glad your surgeon told you it was your best option. That's where I think I'm having issues is the fact that my GI said "I have patients who a worse off than you". I just can't figure out what she meant. It was as though she was saying that I should be embarrassed asking for surgery rather than trying yet another experimental drug!! It's easier when everyone supports your decision. I too hate prednisone. It's never put me into remission but it does help me with 'accidents' and lessens the stomach cramps and pain.
I worry about pouchitis and all of the other complications but I'm ready for it.
Thank you for your words of encouragement. I agree with everything you said ;o)
Casie130,

What actually happened is that I made my decision to have surgery after meeting with the surgeon. At that time (early 1992) I was still in good shape. He did not want to cut me until I lost 10 pounds. He was at that time the best colorectal surgeon or one of the best in the USA. And certainly the best in the northeast USA where I lived. He had done hundreds of J Pouches as well as the very 1st K Pouch in the USA in 1970, and he actually studied in Sweden under Dr. Nils Kock (after whom the K Pouch is named).

So I had to lose 10 pounds while taking 60 mg Prednisone because there was no way I wanted anyone else to operate on me. It was not not easy to do, losing that weight. By the time that happened and I could schedule the surgery with his permission, I had deteriorated very badly. I in fact had the surgery "just in the nick of time." He told me it could not have waited and told me my colon "dissolved in his hands" as he took it out of me. He was not a dramatic kind of a guy, more of a just the facts kind of guy. I knew I was flat out lucky.
Laurie-LOL Thanks and will do... ;o)

DJBHusky- so you still have problems with pouchitis? What are the symptoms of pouchitis? Like how would you know if you have it? OR, do you end up at the hospital (in pain) and they do imaging to diagnose? The more I talk to people, it seems the more questions I have.
You seriously had a good doc but darn,,, I'd be a little pissed (LOL) that he risked your life (not knowingly of course) for you to lose a mere 10 lbs! Nonetheless, how did you lose weight on prednisone??? I SERIOUSLY gain while on it. My face alone gains 10 lbs while I'm on it! LOL LOL

new2thisstuff- I don't think I will ever question myself about not taking the biologics. The side effects are quite a bit more serious than even Imuran. Since it is an infusion drug, you can't quickly 'undue' a side effect (like vomiting, abdominal pain, headaches, chest pains, itching, etc... I've watched many medicines slowly destroy my mother. She developed pulmonary fibrosis from taking methotrexate injections for rheumatoid arthritis. Basically I feel, why take a chance on giving yourself another illness?? Especially if there is a better than 70% chance that the medicine will stop working after a short period of time? That's just my thoughts. If I have surgery I could possibly get off all of these useless medications and all of the supplements and all of the side effects that I get from them as well.
Just a thought....
I have to agree that I don't have much faith in biologics. I tried them because I felt that they could help and was okay with the risks, but they did nothing. They do work great for some people, but it seems to me that many cases just don't respond to anything. That's why we have to have surgical options.

Don't be embarrassed about going to the surgeon! I'm sure they have patients like you all the time. If your whole colon is not affected, I'm not sure I'd get rid of it but see what they saw, as I'm no surgeon!
Casie-

I have had pouchitis since 1995, treatable with antibiotics, and basically kept in check. I can't get off the antibiotics and have to rotate them, but as long as I take them I am essentially symptom free but we have seen some inflammation and ulcers in the pouch (I posted pics of these in another thread).

My surgeon wanted me to lose weight because he told me that a colectomy is easier to perform and more likely to be complication free if the patient is not carrying around extra weight. I was about 162 pounds when they cut me, lost 10 pounds to get there which with Prednisone was very hard. I was weaned off Prednisone but after surgery had some complications and went all the way down to 135 pounds but I have since gained all the weight back.

I don't really have any complaints because I had no choice but to have surgery. I had dysplasia, and as we later learned, my colon was about to perforate. Even with the 17 plus years of battling pouchitis the 20 years I have had with the J Pouch were WAY better than the prior 20 years with UC. Pouchitis is a different disease and seemingly more treatable, although I should add that I have some issues in my ileum above the J Pouch which have led to a suspicion that I may have Crohn's Disease. However, this has never been unconfirmed and my official diagnosis is pouchitis.
quote:
Don't be embarrassed about going to the surgeon! I'm sure they have patients like you all the time. If your whole colon is not affected, I'm not sure I'd get rid of it but see what they saw, as I'm no surgeon!


My entire colon was not affected; only a patch in the rectum about the size of a quarter. That small area put me in a severe flare for over 2 years. Don't underestimate the misery one can have from limited patches of UC.

Sue Big Grin
"DogDay- I think my decision is made. It's J pouch surgery for me. I'm done with drugs and all of the experimental stuff."

I wish it were that simple. You may very well not be done with drugs if you get a J pouch. It is always a tough call but I would exhaust all the options I could tolerate before giving up my colon. I agree that biologics may not be the way to go, I dont think I would have taken them. But sometimes it takes weird combinations of more normal drugs to put one into remission. When you go to CC I would consult with a top notch GI, as well as a surgeon. Even a good functioning J pouch is not an equal replacement for a colon, it will not be the same as having a decently functioning but imperfect colon. That said most people are satisfied with their J pouches. Good luck whichever way you choose.

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