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....
Casie, while I still recommend taking your time with this, it was a REALLY great feeling to go home from the hospital with all of my drugs discontinued - no more IV cyclosporine, Imuran, Apriso, Colozal, Canasa, Cortifoam and a fast taper off Prednisone.
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.
Having pancolitis is not a requirement for colectomy (definitely not at the Cleveland Clinic...and I've seen people who had really bad proctitis post about having colectomy).

My understanding is that they take out the entire colon regardless of the disease extent as otherwise there's a risk of UC attacking the remaining colon tissue.
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.
vstRN- Yes, that's the way I'm thinking. I just wish there was a guarantee that there would be little to no complications.

ke353- Right.. it's not my entire colon. It's my lower left side of the colon and GI told me it's diseased for about a 6" span. Surgeon will hopefully see that in what my GI sent to him.

DJBHusky- I will pray that it is not Crohns!! I've read where there were misdiagnosis' in many cases where the patients were diagnosed and treated for Colitis but it was really Crohns. Not good. You have been through it! 17 plus years of pouchitis- Have you thought about getting a new GI who will determine whether you have now developed Crohns? If you current doc can't confirm or deny, I'd see someone else. Just my opinion.

ActiveUC'er- This is my understanding as well. From everything that I've read over the past few years, that UC will likely come back if the entire colon isn't removed.

Sue- Thank you! It affects my lower left side about 6" moving upward in the colon. My entire problem (hence my original post here in this forum) is that my doctor confused me when she said she has patients worse off than me. So I started to think that maybe she meant that if only a portion of colon is affected that I'm not as bad off as others who's entire colons are infected. I was thinking to myself, well if I'm in this much pain and having flares of this magnitude on a regular basis, people who have entire colon infection must be near death. The fact (so I'm finding) is that Ulcerative Colitis is Ulcerative Colitis and regardless of how extensive injury to the bowel is, if medications are no longer working and I've depleted all medication options, then I can either continue to live with it (and possibly prednisone) or have surgery.

chiromancer- One thing my GI did say was that if biologics don't work for me, there are no other medications to try but prednisone (which doesn't put into remission in my case) mixed with some of the drugs that stopped working in my past. I DO have another appt with her for the week after I meet with the surgeon. I will ask her again if there are any other options (besides any experimental surgeries) that might put me into remission. I would love to hear if you know something more...Please let me know if you know of any and I'll definitely speak to my GI about them. I haven't even read of any other options.

Thanks to everyone for all of your ideas and information!!
quote:
Have you thought about getting a new GI who will determine whether you have now developed Crohns? If you current doc can't confirm or deny, I'd see someone else. Just my opinion.


It is not so easy to confirm or deny as you seem to think. I changed pouch experts in 2010 strictly for insurance reasons and both new and old pouch experts have come to the same conclusion: Crohn's can be suspected but not confirmed. I have had 3 diagnostic tests as well as my routine scopes and they have all been inconclusive. The pattern of inflammation that exists in my ileum is inconclusive and may be due to a narrowing/segmental thickening of the ileum above my J Pouch that has caused "fecal stasis" or pooling of the feces above the J Pouch with resulting inflammation. Therefore, structural rather than systemic issues may be causing the inflammation being seen in my ileum, although they are puzzled by it because the structural theory does not fully explain what they are seeing.

It should also be noted that there was no inflammation seen in my ileum until 2008, meaning I had absolutely no symptoms or signs of Crohn's Disease for a full 16 years after getting my J Pouch.

I am of the opinion that my diagnosis is irrelevant, because we have been using some medications that are indicated for treatment of Crohn's, and in any event I have responded to the traditional treatment of pouchitis: antibiotics. Way too many people are caught up in the significance of a correct diagnosis as opposed to finding a proper treatment. If the treatment works the diagnosis is not important.
I would say yes, you are ready. It seems like you have tried a variety of treatments and given everything a fair go. Despite everything that has been done, you still haven't achieved remission and you are continuing to have flares. It's unlikely your UC will improve with the current course, and I would say you will probably only get worse, considering your system is no longer responding to treatments that worked in the past. In my own situation, I deteriorated in matter of weeks, to the point that my surgery ended up being on an emergency basis. Believe me, you do not want to go that route if you don't have to. You have a far better chance at a quicker and more successful recovery if you go into your surgery relatively healthy. So, I would say if you are at the point that you are considering it, then you already know the other options have failed or are likely to fail. You're also saying to yourself that you've had enough. So why not go for it? You could have a whole new quality of life waiting for you.
"Please let me know if you know of any and I'll definitely speak to my GI about them. I haven't even read of any other options."

Years ago when I was in the midst of a very long flair I was put into remission with hydrocort enemas and sulfasalazine. This was before may of the newer treatments. For years I was in remission or low level disease with VSL#3 and sulfasalazine. I lost my colon to cancer not because of direct effects of UC, but the indirect. Someone suggested the fecal transplant this has become much more main stream
and is being used to treat C diff infections.
My main point was it is likely but not certain that you will use less medications with a J pouch and you cant go back.
Oh yes.... the GI's still use those enemas. Hydrocort worked really well in conjunction with the Prednisone I was taking last October... at least for awhile. By November, I started with a flare so bad that it wouldn't allow me to hold it long enough to have an effect on me ;o( I was very upset about not being able to hold it. I even thought this time around that I would try to use it again when/if I go back on Prednisone after I meet with the surgeon. I am alergic to sulfa drugs, but I also took the non-steroidal enemas (Rowasa??) a few years ago. They didn't do anything for me but it was worth a try. NO to the fecal/bacterial enemas or capsules. I do currently use VSL#3 (one in a.m. and one packet in p.m.). But VSL#3 (introduction of the bacterias does not put anything into remission). I can't see where it's done anything positive or negative. I mix it with applesauce or yogurt!! Good stuff.
Thanks for the information though. Keep me in mind if you hear of anything else please. That fecal transplant just doesn't even sound right. I read somewhere where a guy went to another country and ate a certain type of worms for a week!! This type of treatment wouldn't sit well with me either!! LOL However, he swears it puts him into remission and he flies out on a regular basis. I will try to find that article again it was quite odd... but if we could fly those worms in and put them in a pill form, I would consider it!
Casie, I only wish I was in your boots now, so I could give all these alternatives, no matter how odd they sound, a try, fecal transplants included too. There's just no turning back after surgery Frowner I really wish I could now to try these alternatives. You see the internet wasn't even around when I pulled the trigger and got my pouch. It's been an annoying experience for me, including this morning when gas woke me up and would not let me get a full night's sleep Frowner
I don't know...maybe its just me but the thought of putting worms and someone else's fecal matter in my body just totally grosses me out! Eeker And there is no guarantee that it would work or stay working in the long run.

I can only tell you, Casie130, that I do not miss my rotten colon one bit. I never have to worry about flaring again, colon cancer, restricting my diet, or taking drugs ever again. Now that's a wonderful feeling. Smiler
quote:
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.


Oh no, that's not what I meant! I just miss having a colon and didn't want to get rid of it, but I had no choice. I know others don't feel that way at all though.
Casie, glad you found yourself over here. I felt the same way as you do about being embarrassed when I first was going to the CC. The surgeon told me what Sue did. Just because it doesn't affect your entire colon doesn't mean it doesn't make you very sick. The drugs aren't working anymore, you don't want to try biologics and you want your life back. Sounds like you are ready for surgery. You will feel so much better once you go for your consult.

I have to tell you that my new job is going well and the irony is that for many years I have wanted a private bathroom and have been so embarrassed because I have had to share a bathroom and have often times thought I wasn't going to make it. Well, now that I rarely have to go during the day (literally I have gone once during my workday since starting 2 weeks ago) I have a bathroom about 8 feet from my desk. It is a private women's bathroom and the only office around is mine and a hallway. So, so funny!

I'm so happy for you, I just wish you were going in earlier. The waiting and worrying is the worst part.
Disneynut- NOW THAT IS TOOOOOO FUNNY! Unbelievable ;o) The bathroom on my floor only has 3 stalls (sp?) and it serves the entire floor PLUS if conferences are going on the in the conference room they use it too! If I have to run upstairs a floor.... I won't make it. Thank God I've always lucked out over all these years.

ke353 & Dogday - I'm so sorry you guys didn't have a choice. I do feel better knowing that I've tried all medications and supplements that my GI instructed me to try. I am truly sorry that they stopped working and some didn't work at all. Remicade is out of the question for me as well as the fecal enemas and worms. That's where I draw the line. But yes, I have a choice.
Dogday- I'm sorry that your pouch surgery is so bad. I wish you well. I have no clue about these things, but is it something you can maybe have re-done now by a surgeon who may know the surgery better than yours did way back then?

mgmt10- LOL LOL yes, I have to agree with you... fecal transplant just isn't going to happen. I just don't think I could eat worms either!! Both of those are as bad as having chemicals injected/infused into my system.

DJBHusky-
"Crohn's can be suspected but not confirmed."
Are you referring to only your case/issue or are you saying that doctors can't diagnose Crohns period?? I had a friend back in college whom I could've sworn told me he was diagnosed with Crohns. I thought that if it could be properly diagnosed, the doctors could do a proper treatment and/or surgery for it.
I did read on one of these forums that someone was misdiagnosed as having UC when it was actually Crohns and it caused problems with her pouch after surgery was done. But, like I said, I don't know much about Crohns. I'm so glad that you are fine with the antibiotics for the pouchitis.
My UC started with just the sigmoid colon and rectum being involved before spreading to the entire colon. I tried the biologics, but to no avail (it was determined my colitis was refractive). The thing with biologics is that they are purpose-grown antibodies and, as any other foreign protein, your body will eventually reject them. I had started to produce anti-Remacaid antibodies by the time I elected to have the surgery.

Sometimes I wonder if I could have tried something else, but then I go and look at the success rates for some of the more interesting treatments and they just aren't very encouraging. It sounds like you're in the same place I was in about a year ago: The treatments aren't working and you're fed up with feeling awful. If you decide to have the surgery, I wish you all the best.
quote:
ke353 & Dogday - I'm so sorry you guys didn't have a choice. I do feel better knowing that I've tried all medications and supplements that my GI instructed me to try. I am truly sorry that they stopped working and some didn't work at all. Remicade is out of the question for me as well as the fecal enemas and worms. That's where I draw the line. But yes, I have a choice.


It is what it is! Remicade wasn't really a question for me, the doctor told me I needed it so I agreed to it blindly. I didn't know enough of the side effects at the time and thought it would definitely work and felt it was my only hope. If I had had the disease for longer and researched all possibilities I may have refused it as well. This is a very tricky situation. You never know what will work or how much the disease will spread/worsen. I'm under the impression that our fate is decided right when we get the disease. If it's going to be moderate-severe and not respond, it will progress no matter how early you catch it and now matter what you do.
quote:
mgmt10- LOL LOL yes, I have to agree with you... fecal transplant just isn't going to happen. I just don't think I could eat worms either!! Both of those are as bad as having chemicals injected/infused into my system.

Casie the truth is those are just minor inconveniences compared to living with no colon for the rest of your life. My lord if I could only take my decision back and get my diseased colon back I'd be more than happy to try those alternatives and begin to feel normal and whole again and even more importantly put a end to the hell I'm living now.
I would try the fecal transplant and worms in a second (and I'm a vegetarian too)! I'm pretty fresh out of surgeries but I really really wish I had waited on this and exhausted more options. It does sound like you are emotionally ready for this and I think it is wonderful that you are confident you want this done. I made the decision because I was scared, felt guilty and was just so emotionally beaten down from a 2 week stay on a med/surg floor with horrendous room mates. When my kids would come to visit, they would push my IV pole down the halls and I just never wanted to be in that situation again. I don't want to be terribly pessimistic here because this is obviously a forum for support, but things are different after surgery. And they haven't been good different (mind you it hasn't been that long for me). I would also take my diseased colon back any day. I certainly hope I won't be saying this in a few months from now. But again, I really do wish you the best with this. So many people are thrilled with their results. I'm actually doing pretty well but I'm definitely mourning the old way.
I'm sorry Dog Day and vstRN, I didn't read your whole stories, but were yours emergency surgeries? Where were your surgeries done? I know the success rate is much higher when it isn't emergency surgery and when done by an experienced surgeon. She needs to make her decision based on comparing apples to apples. I hope I didn't offend, because I feel very bad for your situations.
It is good to be skeptical when making this huge decision. I had conscious sedation over 14 years and saw my colon sick and then bounce back. I knew what it looked like inside. During my last test I saw that part of my colon was BLACK and dead inside. The rest of it didn't look well either and my GI took around 30 biopsies. I didn't have any polyps, just one ugly mess of a colon. I'd been in the flare from hell for 6 months.

My GI set up for a CTscan 2 days later. When I had my follow up appointment, to evaluate all, he suggested prednisone or biologics. I said no. If I was 24 instead of 54 I might have tried them in hopes of a cure coming, but at 54 I was tire of waiting.

I wish I'd had the surgery years ago. I'm having problems with my J-Pouch 19 months later but would still make the same decision. The big majority of people having the operation are doing great and they usually do not use support groups like this one. Someone has to be in the 10 in 100 that have problems, percentages vary, I'm using this %age for illustrative purposes only. I just happened to be one of the 10.

My GI took a deep breath and said when he brings surgery up patients don't accept it very well. He was glad I'd done my research.

We are all different and are here to give you any support we can. I'd read a book on prednisone and researched Remicaide. If you have any doubts I suggest you do the same.

Take care and please keep us posted.

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×