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Posted 3/1/2013 1:54 AM (GMT 0)
Some of you may remember, I was here a few weeks ago asking about questions to ask at a surgeon consult, and about how sick you were at surgery time (sorry for all the trouble THAT ended up causing!) I'll try and keep this brief....

about a week after my surgery consult, which went very well, I was diagnosed with C Diff, and everything was put on hold. After a 2 week course of Flagyl, I feel a bit better than I did, but no better than before the infection hit. Last Tuesday would've been my 3rd Remi infusion, but GI said to hold off at least a week since I had just had the infection. The next day I spoke with him and he said he honestly thinks I should not do anymore infusions and seriously consider surgery. In many ways I agree with him.

My reservations come in that I know I haven't tried every med, no alternative treatments or diet mods. But I also know that I am sick to the point where I really feel like I don't have the time it would take to experiment with treatments....especially if nothing works, and I just get sicker and then still have to get surgery.

I am also trying to make my final choice between end ileostomy and jPouch. For me the pouch would be 3 surgeries. I am leaving VERY heavily to the end ileostomy for many reasons. I would much rather only have one surgery, feel like there is the possibility of less problems both long and short term, and really feel like I could handle it day to day, even with my active lifestyle.

I guess what I'm looking for is anyone with advice, experience, the interest in playing my devil's advocate or giving me a reality check. Am I giving up on treating my UC too soon? What are some of the problems, or day to day limitations with an ileostomy that I may not be thinking of? Once totally healed will I be able to do most anything I can now? Even simple things like house work, and mowing the yard. What are the benefits to JPouch I may be overlooking? Really...ANYthing you can think of to tell me, I'm a sponge right now and just praying I make the right choices.

Sorry....guess that wasn't very brief!
Posted 3/1/2013 3:41 AM (GMT 0)
You want me to play devil's advocate? I will.

I'll address this first.

"Am I giving up on treating my UC too soon?"

Yeah, probably. According to what you say, you were diagnosed last year, June. So not even a year. You've seen my posts on the UC section. I don't fare too well myself, and it's been 2 years. I still have to try some more stuff. There's people that have been suffering way longer than us and still have their colon.

But this is a choice you have to make, how much can you stand suffering. For me, at least, I have to feel that I tried absolutely everything before I make the decision. The final decision will always be there for you. However, once you make it, there's no going back, at least not in this century anyways.

"final choice between end ileostomy and jPouch"

My answer to this will be biased. I also base my answer on what Suebear or ByeByeUc have stated time and time again, that they love their J pouch. What I envision life to be after the surgery is to be as normal and look as normal as I was prior to having a disease. Let's face it, having an appliance glued to the stomach, imo, is not as normal as it can be. Also I'm not the best at maintenance, I don't think I'd be a great candidate in taking care of the bag, so it doesn't leak, powdering, cutting, adjusting...oyyy.

Also, what is the point of a J pouch if we're just going to not go with that procedure. Why was it invented.

By the way, most likely you'll probably going to get biased answers. Post the exact same thread in the UC section, I'll bet the answers will be quite different.
Posted 3/1/2013 4:21 AM (GMT 0)
Thanks, Dude! I knew if you saw this post you would be happy to play my Devil's Advocate role :) And yes, I have NO doubt I would get very different answers if I asked these questions on the UC forum, though some there had said if they were as sick as I seem to be, they would probably be at their breaking point too.

And that, is my biggest problem. I am 40 pounds under a healthy body weight for my height at this point, have had NO appetite for 3 months now, but do eat what I can....I'm a skeleton. I haven't slept for more than 2 hours at once in 3 months and that is getting worse. The doctors say before long I'll end up in the hospital just because of all of that. I worry that if I take the time to experiment with other options I will have to quit working (which I may have to do soon anyway), burn up all my leave time and then REALLY be screwed if I end up needing surgery anyway. The whole thing is a gamble either way I suppose.

And the J pouch was invented as a medical advancement, an option for those that want it, but not something everyone that can get it has to take.
Posted 3/1/2013 1:40 PM (GMT 0)
UCwhat,

It's a tough decision for sure but after having suffered with UC for many years (25), I wish I'd gotten it removed many years sooner. I was always underweight and never felt 100% in terms of energy which was directly related to nutritional absorbtion etc. I had the ileo procedure in May 2011 and I have never felt better. Another appointment with my surgeon in early April will determine if I can move forward with the jpouch. I have had constant issues with the remaining stump and if he's not 100% confident with how successful the surgery may be, I'll elect to keep the ileo on a permanent basis.....

I wish you all the best in whatever decision you make but as others will tell you, life with a successful ileo is much better than life with an unhappy colon.....

Bruce
Posted 3/1/2013 6:35 PM (GMT 0)
I think you're a candidate for surgery now; I wouldn't wait. I also think you have made your decision, it sounds as if you would prefer a permanent ileostomy, which as A-OK. Only you can make this decision.

Sue
Posted 3/1/2013 8:02 PM (GMT 0)
I think it sounds like you are ready, you have said you are ready. It is common to second guess yourself and that's what you are doing. I did the same thing, we all did!
Surgery is NOT giving up, never think of it as giving up! I can't stand to hear it put that way. I don't see how getting your life back and getting all those dangerous drugs and diet restrictions away is giving up! You don't have to try everything, you don't have to suffer for years so you can feel better about surgery. Somedude asked what the point of a jpouch was if you don't choose it. In that respect, what's the point of an ileo or jpouch if people with uc don't choose them to be healthy?
As for the choice between the 2 surgeries I chose a permanent ileo, for basically the same reasons you stated. There is nothing you won't be able to do after your healing period. You should be able to eat and drink everything after a while also.
You do not want to end up with emergency surgery, and the sicker you are the harder surgery will be. So if you feel like you are ready then go with your (no pun intended) gut instinct.
Good luck!
Posted 3/1/2013 10:23 PM (GMT 0)

ucwhat,

I'm going to put my two cents in here because I had to make the same decision 2 years ago.

I know your uc diagnosis wasn't so long ago, and that most people have surgery after suffering for years. Some people got a diagnosis and the suffering began immediately with a rapidly spiraling disease. But I don't think that length of time since diagnosis is necessarily a factor when considering surgery. It depends on how bad the uc is right now.

Regarding alternative treatments and diet: Diet, for me, had absolutely no affect. I had also treated the uc for years through a homeopath. This was at the time when my flares were very, very mild. If I'd known better, I would have started taking an asa-5 therapy immediately. Apparently there was low-grade inflamation at the time which resulted in a fibroid stenosis at about 27 cm, which was threatening to shut down completely (and then I'd be rushed to the ER for a colectomy by a surgeon who may or may not have had much experience with colectomies) or could possibly become malignant (whichever happened first, but according to my GI, it was going to shut down in a matter of months). The homeopathy did nothing when the flares became worse and worse.

You are being treated with remicade now and the treatment does not get much more radical than that, as far as I know. My decision was made on the realization that my UC was going to get worse, not better, and it was resisting pred and azatheoprin. My GI said he thought it was bad medicine to keep treating me with harder drugs, particularly in the face of the stenosis, which is very rare with UC.

I think the questions you need to answer are, can you stand more of how it has been, will you be able to stand it if it gets worse, what will happen if the remicade stops working?

I'm tempted to encourage you to have surgery, but this is a decision you have to make.

If you have three surgeries, the first stoma will probably be an end stoma, which is changed to a loop stoma with the second OP. I understand how you feel about having to have three. I was overwhelmed with the idea of two and was absolutely freaked when my surgeon said it would have to be three. But even with three, these are three operations and hospital stays that you can plan at your convenience, when it works for you. My first two were 9 months apart, and the 3rd was three months after the 2nd. The nine months were enough time to start a new job and get settled, I did the 2nd over Christmas vacation, the next 3 months were simply more life with stoma and I was readying and raring to go for the take down. That was one year ago this month and I haven't had any complications, although I admit I complained a lot when I wasn't having any bad problems. I think that if you are considered a candidate for the jpouch, go for it. It made a tremendous difference to how I feel, and I'm very happy to be able to go out my bottom and very happy to never see blood in the toilet.

So I'll just end by saying that surgery is not giving up. No way. It is a form of self-determination and after recovery you will be living life totally - with or without a jpouch and with or without a stoma.

Posted 3/2/2013 12:08 AM (GMT 0)
Thanks to everyone for their input, it really means a lot to me. I've been feeling quite rough the last few days....and as I read your responses I had tears in my eyes...just overwhelmed with everything I guess. And also grateful there are folks out there who understand.

@Alive and Well~ It's good to know the ileo has worked out well enough for you that you won't be disappointed if the jPouch isn't an option. My surgeon said I am so sick that even with the ileo, she likely wouldn't sew me shut, but leave a small stump. Apparently that wound is a very tough one to heal, and she fears I may be too sick to handle it. I have A LOT of inflammation in that area though, and hope it doesn't cause me problems if left open.

@ Suebear ~ Yes, if I'm going to do it, the sooner the better, I'm in bad shape. The surgeon was out of the office this week and will hopefully get in touch with me on Monday. We had one consult, so hopefully things can get rolling quickly from here.

@Summerstorm ~ You are totally right, I AM second guessing myself. Worrying about the little things that have a small chance of going wrong. Worrying about having a troublesome stoma, or limitations on what I can do with and ileo. But you are right, anything has to be better than life with UC. Taking nasty drugs, worrying about food, always waiting for the next flare....it's no way to live.

@ B'Dereh ~ All of your points are great ones. I am in pretty bad shape now, and don't think I could go on like this or worse much longer....would likely end up in the hospital. My disease progressed VERY quickly, even shocked my GI. It is completely prednisone refractory, the first 2 infusions of Remi brought very little relief. I would try one more, but if it doesn't work, surgery is only riskier with the Remi in my system. I think I know I want the surgery, it's just so easy to be unsure once it becomes a reality. Thanks for sharing your story!!
Posted 3/2/2013 10:22 PM (GMT 0)
ucwhat,
You just confirmed what I was thinking. Your uc spiraled at dizzying speed and now's the chance to nip it in the bud and not let it continue to ruin your life. My medical reports state that surgery was done because I became pred refractory. When the remicade is only helping you very little, the situation is very clear.
Now, ask yourself:
1. Do you have a feeling of trust for the surgeon?
2. Do you like him or her enough that when they make the daily rounds in the hospital, you will feel happy to see that person?
I trusted my surgeon implicitly and thought he was a wonderful, loveable person. These surgeries are major watersheds and positive feelings for the surgeon will make things that much easier for you.
Personally, I would skip the remicade experiment. If it hadn't helped much so far, the uc will probably get worse even if the next infusion helps more than it did earlier. How long do you want to keep going with remicade?

That said, just know that the worst part of it all is the fear you are having now. There was no part of it from the first surgery on that matched up to the terror I was feeling in the weeks leading up to the collectomy. So the really bad part was all in my head.
You are going to feel so much better after surgery and your life after recovery is going to be so much better!
Posted 3/3/2013 8:09 PM (GMT 0)
UCWhat, a key for me was deciding that I was at peace with not having tried everything.... I did try most of the drugs, several diet things, alternative thing etc, but there are always more to try. I got to a point where I just was very clear that I was done.... maybe I missed something, but I tried, my doctors tried, but I was done trying things.

I asked what if they cured Crohn's in a year, and thought that I'd be thrilled, but I couldn't wait that long (and sadly, it's been more than a year, and Crohn's remains uncured....).

Because I was so clear, I've had no regrets, despite many complications. I was sick for a long time, and had totally lost perspective on how sick I was..... day to day issues w/the bag are nothing compared to the way I was sick.

There's a lot to be said for not putting all those drugs in your body too -- they have consequences. One of my biggest IBD related worries now is my bone density due to all the pred I took. I got a very high, very scary fever while I was on cimzia that was terrifying.... thought I was going to die..... so there are costs to waiting too.

Good luck deciding.... not simple, that's for sure.
Posted 3/3/2013 8:41 PM (GMT 0)
UCwhat, you know how I feel... I was diagnosed a month before you, tried similar things, had a similar experience with disease refractory to practically everything... There's no shame in choosing surgery even if you haven't tried every treatment. I myself never tried most of the 'alternative' treatments like LDN, FT, slippery elm, glutamine, sunflower seeds and spinach, etc. I don't deny alternative treatments and diet mods help some people, but I really believe in situations where you're extremely ill, like I was and like I suspect you are, the likelihood of having significant relief from those treatments is very low. Furthermore, I had the experience of weakening myself and probably hastening my hospitalization because of stubbornly trying a diet mod (SCD). As my GI said, "I have nothing against trying dietary changes to see if they'll help, but every time my patients go on SCD they lose weight, and none of them have weight to lose."

I don't think you should look at surgery as "giving up." Surgery is just another treatment in our arsenal of treatments for IBD. When you consider its success rate and side effects, if you compare it alongside the medicines we put up with (Remicade, pred, etc), it sounds like a miracle treatment!

I'm still way too new to this to give you great perspective about limitations of life with an ileostomy (or benefits of a j-pouch). I suppose I miss lying on my stomach, though longer term ostomates tell me it can be done. I was an avid weightlifter before becoming ill and it's my understanding that although it can be done with a well healed stoma, there will always be a significantly increased risk of hernia because of the split in the abdominal wall to bring the stoma through. I won't have my stoma long enough to need to worry about that, but it's definitely something I would be concerned with if I were going to make my ileo permanent. I haven't had this issue myself (touch wood) but an ostomy can be a nightmare if you have sensitive skin that doesn't play well with the various appliance materials and adhesives. Again, longterm ostomates will tell you you WILL eventually find an appliance that works for you, but the adjustment period should be noted.

Since your surgeon said she wouldn't 'sew you shut' during the first procedure even if you intend to do a permanent ileo, I wonder if there's a way that you can do the first procedure without deciding yet if you want a permanent ileo or the j-pouch. I'm on the way to making a j-pouch, but I believe it would be pretty straightforward to switch to a permanent ileo at this stage if I wanted one. That way you could test drive life with an ileo before making the final call.

Recovery is no walk in the park but I have never for one second regretted my decision to have surgery. There's no rule that says you have to suffer X amount before you can have surgery and there's nothing noble about holding on to an organ as long as possible. Don't sacrifice everything else for your stupid colon!
Posted 3/3/2013 9:55 PM (GMT 0)
Liz, fyi, my surgeon said that her weight lifter patients NEVER get hernias.... you get them more when you're out of shape and flabby, strong abs are protection .... of course, you need to take appropriate precautions ....

I like your description of surgery as one treatment in the arsenal. I think one of my problems was thinking of it for so long as giving up.

Also agree that you can be too sick to have the diet and other changes have much chance of helping... perhaps at another point, but sometimes the disease just has momentum and runs faster than the modifications....
Posted 3/3/2013 11:22 PM (GMT 0)
Just to throw in points as a devils' advicate- I keep thinking I am ready to throw in the towel on surgery but in the end I keep chickening out... It is not an easy decision, partly because there is no guarantee that the surgeries will end dependence on drugs- or even on prednisone. Around 10% of those with "positively confirmed" UC turn out, post ----surgery, to have crohns. Granted, jpouch.org, like these boards, is skewed to patients having problems, but still, that forum is loaded to the gills with people chronically on antibiotics, immune suppresants, and even prednisone after having had their colons removed- scary stuff. When one is suffering so horribly 90% odds sound pretty good, but compared to most things- say driving through an intersection in your car, or taking an airline flight, a 1 in 10 chance of disaster would be unthinkable- almost on par with playing Russian Roullette. And for me, my UC is somewhat indeterminate.

Reversing a jpouch to a permanent ileostomy is apparently a bit of a surgical nightmare with a high complication rate. And if one does get a perm ileo and wins the lottery on getting crohns-like disease around the skin at the adhesion site, there are few medical options and they seem to be the same old same old IBD meds again. Anyway, these things have kept me baulking at surgery for years even after several surgical consults. I know I may eventually - possibly soon (have said that for years lol) throw in the towel myself nonetheless- and then hope for the best- and I totally respect everyones individual decision. It is ultimately the loneliest decision in the world, methinks.

Post Edited (Probiotic) : 3/3/2013 4:26:06 PM (GMT-7)

Posted 3/4/2013 12:21 AM (GMT 0)
My reservations come in that I know I haven't tried every med, no alternative treatments or diet mods. But I also know that I am sick to the point where I really feel like I don't have the time it would take to experiment with treatments....especially if nothing works, and I just get sicker and then still have to get surgery.

I had exactly the same reservations, but the thing is: it is almost impossible to try every med, every alternative therapy and every diet modification. You could spend a lifetime trying out different stuff and still not have exhausted all the possibilities. Each new thing takes at least a few months to really try out properly. In my case, I could have tried anti-MAP therapy, adacolumn apharesis, plus a few really obscure meds such as thalidomide and tacrolimus. At various points, I discussed all of those options with my GI. He did not have much faith in the MAP theory, but was willing to let me try a course of anti-MAP antibiotics.

In the meantime, I could have tried diets like the SCD, Paleo, GAPS, low-FODMAP, Japanese semi-vegetarian diet, etc. I have done liquid diets (elemental and non-elemental) and gluten-free, but not gone all out with SCD et al. I also could have tried faecal bacteriotherapy, helminth therapy, and god knows what else. There are loads of alternative therapy regimes out there: there are folks who join HW specifically to let us know all about their miraculous healing regime. At least with conventional treatments you will reach an end eventually; with alternative treatments there is no end that I can spot.

The key is not whether you have tried "everything" or not, but how ill you are and how likely you are to ultimately end up needing surgery regardless. Emergency surgery is not the best way to have surgery by a long shot. You'll end up with a general surgeon who probably won't have had much experience in the way of colorectal surgery. It increases your odds of post-surgery complications. If you must have surgery, make it an elective one that you can prepare for, where possible.

I booked surgery once it became obvious that I was Pred-dependent - and even that drug was controlling my disease increasingly less well. I did not want to wait for Pred to fail entirely, so I made sure I had surgery before I could.

I guess I am biased towards you having surgery, but that is mainly because it seems to be on the cards anyway and I suspect/hope you will feel miles better afterwards. I'm sorry I can't help with what type of surgery to have: that particular agonising choice was removed from my hands, as I was not a suitable candidate for a j-pouch.
Posted 3/4/2013 1:41 AM (GMT 0)
Wow!! I haven't logged on for a couple days and am overwhelmed with the continued responses and input. Thanks to each on of you for taking the time to give me so much honest insight and information, it means a lot to me.

I definitely want to get the surgery, and will go with the permanent ileostomy for all of the reasons I mentioned before. Of course, nothing can be easy for me though. I'm pretty sure that even after 14 days of flagyl, the CDiff infection I had may not be gone. Apparently since I was on antibiotics, they can't really retest for CDiff right now because the meds in my system don't allow for accurate test results. So now I am worried that the possibility of ongoing infection would delay my surgery, but I'm not sure. I can't imagine waiting much longer, I'm so sick and weak already....ugh.
Posted 3/4/2013 3:24 PM (GMT 0)
This is such a tough one overall as each and every one of you have differing opinions for very many good reasons.

So since you are asking for individual responses and opinions I will share my husband's experience, opinion and outlook.

He suffered for 5+ years.  Found a way here and there to just "deal with it" while trying so many different meds.  Failed remicaide.  Got to the point he was under the care of a pain management specialist as well to get through the days.

He just got sick and tired of being sick and tired and living a reclusive sort of life as it was easier to stay home and have the bathroom nearby and live in sweats or athletic pull on shorts.  While surgery was suggested and recommended he just wasn't ready.  I never pushed as it had to be his decision.  Living with this situation was a very tough one and broke my heart and I was so relieved the day he decided "it was time".

Now initially a j-pouch was his preferred surgery of choice and we both had hoped and anticipated this would be the case.  Since he was off the prednisone for so long it would be a 2 step process.  The CR surgeon had his doubts and expressed them and also recommended the one step permanent ileostomy.  However, his surgeon only scheduled his surgery for that day.  Long story short...7 1/2 hr very tough surgery and the j-pouch could not be performed for good reasons.

Initially the day of the actual operation I think I was more disappointed than he was.  He accepted it immediately and I did also because we had the utmost confidence in this surgeon from Mayo Clinic and his indepth explanation was all we needed to understand the reasons why.

Now in retrospect and it being 2 yrs last Dec that he had the surgery I can say for the both of us it was a life saver in many ways.

Yes there was the initial trial and error and finding which appliance was best for him and his sensitive skin.  We got excellent training from the WOCN's at Mayo Clinic so  we had a good foundation from the outset.  The Healing Well forum and the UOAA site helped supplement with questions here and there to help "master" this new lifestyle.

He was fortunate in that he healed well and no complications.  Also having the one surgery and permanent ileostomy he is very content and happy with.

He does a full change on Wed and Sun and has a product that works perfectly (so far) for him.  I know there are situations that can occur down the road but I/we do not obsess over it and live in the moment and have made up for lost time....BIGTIME.

To no longer have that constant urgency, frequency and pain is just wonderful.  His life is so much more predictable and manageable now.  He is 66 and we have been together 44 years so we obviously do not have some of the challenges others may face.  So what works for us may not necessarily work for others.

We were out at a dance last night and it was close to 3 hours since we left the house and I whispered to him if he needed the men's room and he didn't.  Matter of fact he didn't need to use one until he got home and we were out a total of 4 1/2 hrs and we danced a lot last night too....lol.

We vacation in ARuba for 2 weeks every year and while he was ill it was very tough to travel....you just never knew what kind of day the travel day was gonna be and very anxious.  A few of them were the "travel days from h$ll".   Now we travel a lot more, day trips, extended drives, cruises etc. 

For him because he has done so well with his recuperation and adjusted easily to the pouch process he does think the j-pouch might have required too much effort overall.  I can certainly understand the desire to be able to have a j-pouch and not deal with the equipment but for him the predictability of the pouch turned out to be the better situation.

Good Luck...whatever you decide I truly hope your healing and recovery goes smoothly and you have an easy time managing everything.

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