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P
Good evening all. I'm in Columbia, SC - and new to these boards. I know this is the "Help! Need Advice Now" forum, and I haven't yet even had my first surgery but, I have to say that the discussion with the surgeon today left me wary of having the two procedures done at all... and I'm really looking for some strong advice...

History: Diagnosed with UC in 2009 (first colonoscopy). Sulfasalazine and Asacol had no impact (actually seemed to make things worse). Major UC flare symptoms for almost the next two years averaging 40-60 mg of pred a day to contain it (gained 60 #). Then my GI put me on Remicade (Lost 45#) Immediate positive results for about 6 months before I started building antibodies to the medicine and having allergic reactions. GI took me off Remicade, and back to Pred for 6 months or so (20mg avg per day). Then onto Humira in 2013 which worked awesome until about January of this year when I took some antibiotics and went into a severe flare. Since March, and the flare settling, things have been up and down... taking Humira bimonthly, and supplementing with Pred (10-20mg). Still on Pred though, I had a second colonoscopy in late June. Moderate UC biopsies throughout all my lower intestine. No evidence of anything in the upper. Doc told me to take Humira every week ($11k a month...)... and still taking 10mg of pred a day. Last appointment in August, doc said that surgery might be the answer. I haven't even reached a point of trying to taper off the Humira and Pred, but decided to consult with a surgeon.. Of Note: Currently things are relatively in control i.e. only going 2-3 times each morning, no blood, mucus, etc... which brings me to today...

Met with the surgeon this afternoon, and he scared the heck out of me. He basically gave me zero reassurance that my quality of life would be any better with surgeries and pouch. He said I was definitely a candidate due to the fact that it seems that my body is steroid dependent, but he also stated that 80% of people who get a Jpouch have some type of complications sometime in the future. In fact, my primary takeaway from the consult was that the pouch and surgery were pretty much going to leave me in the same exact place I'm at now, or possibly worse... The entire consult was pretty damn scary... to the point that I'm second guessing this as even a viable solution to improving my life...

I did some reading tonight through the forums, and it does seem that individuals have a number of issues with a pouch. At this point, I'm clueless, scared, confused, and about twenty other adjectives that have me sitting here feeling completely lost... My wife is an advocate for it (having seen me suffer through flares), my parents called to say they'd support me in whatever decision I make, but none of that is making me feel any better about the fact that I feel like I'm staring more worry, more stress, more anxiety regarding health issues in the face.

Surgery was scheduled for Nov 3. The doc said if I feel I need to come back and talk to him again, I can. I'm pragmatic enough to know that no person is going to have the same response. But I read post after post of pouchitis, and other issues... I guess my question is, "if you were in my situation; if you were currently stable (although taking Humira 4x monthly and 10mg of Pred is terrible for you), would you do it again?" All things considered, am I making the right decision having this surgery? At this point, I'm scared to go forward.

I have plans on relocating for work next year, which has my back somewhat against the wall relative to timeline to get this done (if decided to do so). Totally torn of I should delay it a year or so...

41 yrs old
Scheduled for Surgery Nov 3.

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P PluotMember
I have no idea if the 80% number your surgeon quoted is accurate, but it sounds like he was trying to prepare you (in a really insensitive/boneheaded way) for the fact that colectomy and j-pouch construction are major surgery. I would not be surprised to hear that the majority of people do experience "some kind" of complication, but he failed to educate you on what that means!

"Complication" does not mean a lifelong battle with chronic pouchitis. It can refer to a surgical site infection that is resolved with antibiotics in a week. It can refer to a post-operative stricture that resolves with an in-office dilation procedure (I had this -- I have no problems since). It can refer to an intestinal blockage, a post-operative ileus, or a one time case of pouchitis that resolves with treatment.

My point is, the j-pouch is real life and it's a major part of your anatomy that is built entirely by surgeons. It's *amazing*, but it's not perfect. It's best to go into it with your eyes open that probably something will go wrong along the way, *but* keeping in mind that most of those things that can go wrong can be treated. And only a tiny, tiny minority, less than 1%, would end up on the treatment you're using now.

Since you asked, in your shoes, steroid dependent, I would do the surgery. It's a hell of a lot easier to get a colectomy and a j-pouch than to replace your spine (where I have bone loss due to steroid use). It might not be possible due to your steroid use, but people who are stable prior to surgery are often able to do two steps instead of three, and that's one less surgery, so that's nice. I would not wait until you are in an uncontrolled flare.
P
rachelravenrachelravenMember
My surgery was in 1991.

Back then, they used the word "cure."

My current GI says they never use that word these days. He counsels his pre-op patients that there is a 50/50 chance during the lifetime of your pouch that you will have "some" complication or problem/issue. Maybe a bout of pouchitis; maybe chronic pouchitis; maybe other things... No one can predict this.

However, that being said, life with a diseased colon and amped up steroids isn't good, either.

I had a great run of 20 years with almost zero issues. But, here I am with some now. They're not completely unmanageable, and I have no regrets about having the surgery at 19 (gave me my young adult years "bag free"), so for me, it was totally worth it.

Remember. This site is for those seeking advice and/or those with issues, mostly. When I had no issues, do you think I was on this site? No. A lot of people with pouches are just living life. For what it's worth, I was in full-time nursing school 4 months after takedown, and I never needed BM thickeners or Immodium or stuff like that, and had very little seepage except very early on and at night only. It went away in 6-12 months. I still sleep through the night almost every night. So even with some issues, I'm still blessed with a pretty decent pouch overall.
rachelraven
suebearsuebearMember
I'd get a different surgeon. Fourteen years ago my brilliant surgeon told me that I would be fine post surgery and he was correct; I am fine. I am better than fine as I have had 14 excellent years post surgery.

Perhaps your surgeon's confidence level in his skill is low, or perhaps he really is being an idiot. But I would never have surgery with a doctor who says that 80% of post surgery patients have problems.

Sue Big Grin
suebear
Scott FScott FMember
None of us get to choose perfect health, so we shouldn't, I think, compare our coices to that. Most (by far) J-pouchers are pleased with their result, which is the right question IMO. For you, the question should be what are your risks with daily prednisone and simmering UC? I'd estimate the complication rate from that regimen is *higher* than the pouch complication rate your surgeon stated. On prednisone you may, for example, lose a hip or two, or develop colon cancer from the UC. I'd take a risk of pouchitis over *that* any day!
Scott F
TE MarieTE MarieMember
Dear PSH,

UC is a horrible disease but for most the surgeries do bring about a better quality of life. If I had to do it all over again I would, even though I am one of the unlucky ones that is living with complications. I wish I would have checked out a few other options before my surgeries as follows:

1) I had an open surgery and laparoscopic surgery leaves you with less scarring and internal adhesions. Adhesions can be very painful and in my case are. Patients also recover faster after laparoscopic surgery.

2) Laparoscoic surgery is now performed some places utilizing the da vinci robot and that is thought to be better than plain lapro surgery.

3) I had the most common "double stapled" vs "hand sewn" procedure. The hand sewn is rarely done as there is a greater chance of incontenance than with the double stapled method. In the double stapled method the surgeon leaves approximately 2 cm of the rectum attached to the anus and the j-pouch is stapled twice here to attach it. I read 4% of j-pouchers get cuffitis in the 2 cm of rectum remaining after the surgery. Cuffitis is another word for ulcerative colitis. I was one of the unlucky 4%. I don't know if this is 4% of all j-pouchers or 4% of UC j-pouchers. Some people only have it once or several times and some have it more. I would have still opted for the double stapled as who expects to be in the 4%?

4) There is another option. You can go to a permanent ostomy and wait until your body is healed from the prednisone to make your decision about even having a j-pouch or not. I had a temporary ostomy, which is more difficult to take care of, in-between my 2 surgeries. I've read that our internal organs are softened up when we take prednisone for any length of time.

You can go from a permanent ostomy through surgeries to have j-pouch surgeries.

This website is for people like you that are contemplating surgery, those that have just had it and have questions about it, for people that have problems with their pouches and for j-pouchers that support people with questions etc.

If you have other questions ask away.
TE Marie
clz81clz81Member
I didn't have a choice about my colon coming out. Dysplasia was increasing so needed to come out before cancer. I was living an amazing life in UC remission with only maybe 2 minor flares in 14 years. So from my perspective, yes, life is much more complicated now with a j-pouch vs. a normal working colon. However, when I think back to my days suffering from UC and how horrible my quality of life was, I would so much rather deal with pouchitis issues and partial obstuctions. Yes, I'm frustrated that I still have to deal with issues now that my disease should be gone, but my quality of life is still pretty great. If I were in your shoes, I would likely move forward with the surgery before things get even worse.
clz81
P PSHMember
Thanks all for the input, and you have definitely given me a better perspective on moving forward with the surgery. As SueBear mentioned though, the seeming negativity from the surgeon has me nervous as hell. Of course he made it "clear" that he and his partner are "the only surgeons in 100 miles that do this procedure." I'd love to get a second opinion, but have no clue of where to start or how to get that done with such a short timeline. Sounds like SueBear had a great surgeon, and for me it would just be a little more reassuring for a surgeon to be honest about the potential complications, but also transparent about potential positives.

Maybe she does have a valid point that this guy is just not very good at doing them. I've got a call into him to get more clarification on success rate (a question my mother told me to ask, and one for which I have no idea how you even quantify with so many potential complications)...

Any thoughts or suggestions on second opinions in SC, or anyone have any input on the questions to ask to determine the quality of the surgeon? Of course he's board certified, credentials seem relatively impressive, and he taught for 5 years... I've been spoiled with excellent physicians for years in this town, and just want to feel a little more secure
P
TE MarieTE MarieMember
I know nothing about surgeons in SC but in Florida there are two great places with surgeons I think you could consult with and see soon. The Mayo Clinic has a location in Jacksonville, FL and the Cleveland Clinic has one in the Miami & Ft. Lauderdale area. Both excel in our types of surgeries and care. (Ranked #1 and #2 in the USA) You might want to look them up on the internet and call to see how long it would take to see a surgeon for a second opinion. Both have other locations as well. My experience with the Mayo Clinic in Rochester is that I took my records, actual biopsy slides and copies of the radiology tests via DVD's with me to my first appointment. You already have the tests done so you can order copies of everything and take your records with you. A good doctor has no problem with a patient seeking out a second opinion. You might want to ask your surgeon to refer you to one of these places or some where else for a second opinion. This is a major major major surgery.

You can also ask your surgeon how many j-pouch surgeries he's performed and where he received his training. For example, I looked up my surgeon at my state's medical licensing board and learned that he trained at the Cleveland Clinic.
TE Marie
ElmerFuddElmerFuddMember
While reading your initial post, I had the same thought: "I would find another surgeon." Not that we don't want to understand the facts and risks of this surgery, but you want a surgeon who has an overall positive opinion and perception of the j-pouch surgery as an alternative for UC patients. That Dr. would not fill me with confidence either - I would have walked away feeling like you did.

Word of warning - given your meds and history, please do not put off surgery too long. Many of us landed in the hospital and ended up without a choice (well, unless you consider bleeding to death a choice). I was SO sick by the time I had my colectomy that my recover was difficult. I am happy to say I am doing wonderful with my pouch now, and the statistics on the positive side are this: over 90% of j-pouchers say they have a better quality of life after surgery than before. And you will get off that nasty prednisone.

Another thing to remember - if you can (and you may not be able to), try to get off the prednisone for a month or two prior to surgery. There is lots of research showing that results and post-op complications are higher for patients on steriods. My surgeon would only do the colectomy on my for my first surgery - because I was so sick AND because she will not operate on steroid-dependent patients unless she has to. Made me wait 2 months after weaning off steroids before she would do surgery to make my pouch. Her partners were not so conservative. But it made a difference 5 years later when my daughter had surgery. We were able to keep her off steriods and her surgical results were great.

Anyway - long response. Get the surgery before you have to. Find a surgeon you trust and who has a LOT of experience and a good track record.

Steve
ElmerFudd
J JJAMember
Most people posting on this board are here because they are in the group having "issues"-the rest are off living their lives, and not posting on a support board.

I got my pouch at 19 and had 7 awesome years-occasional pouch it's treated with antibiotics or a course of enemas. Could control my bowels, ate anything, no meds, did anything, enjoyed college life, my 29s, etc.

Even though though developing a fistula and having surgery that compromised my continence didn't get me down and wasn't wnough to make me want to trade those issues for going back to an onto my. I found ways to manage and lived my life-launched a career, got married, started a family.

3.5 years ago I developed chronic pouch it's and failed several treatment options though and currently well mqnag d on more meds.

If I had it all to do over again I'd do it all again. Once IBD runs its course you pretty much have 2 choices-perm ostomy or j pouch. Many have a great and active life it's an osteomy but that road is not hassle free-external appliance, supplies, pastes, leaks, etc. a pouch is not guaranteed worry free either, and if you are miserable, the perm onto my is always an option, but it doesn't work the other way around. Chances are good you will have at least a stretch of good years with a pouch-why not go for it?

Good luck in your decision, but don't be scarred off by the proportion of complications you'll rewd about here vs success stori s-the sample is very, very skewed.
J
MysticobraMysticobraMember
I was going through the same thing you were but longer. I had uc at 40....remission until I turned 50..ten good years. Then the next 8 years I fought it. Good weeks bad weeks. I grew tired of it and talked to a surgeon but she did not scare the heck out of me. I wouldn't put up with that. You need to see someone else. Anyways it is a tough decision especially if you are on a feel good streak but you know deep down it won't last. My surgeon said I was a great candidate for it and we went back and forth so I decided to do it. Now don't take this the wrong way but I had unexpected problems not due to anyone who did the surgery. It's just my luck. But it has been a year and things are definitely getting better. So long because I had additional surgery. I believe if I did not have those I would have only been two three months and I would have been ok. I don't regret doing what I did. It would have only got worse. So now you can take it from there.
Like I said it is not an easy decision. It is a very major serious surgery and things don't always go the way they should.
I wish you luck in the future. Get another surgeon!
Talk talk talk... Get advice. Here and from surgeons.
Richard.
Mysticobra
labloverlabloverMember
My husband had his j pouch surgery 19 years ago after being on steroids which made him sicker than the actual colitis. Having the j-pouch made his life better and he never looked back. Of course, there have been some bumps in the road, but he'd rather have those bumps than the 'crap' he went through with colitis, the drugs etc. Have the surgery (my 2cents)
lablover
skn69skn69Member
I was sick as a dog my whole life...started out as a baby and only got worse...my parents did their best but I lived the best part of my youth in the bathroom or the hospital...I was on pred at 9 (which threw me into premature puberty) and things only got worse...I had a basket of meds by my bedside through my teens and even had a lot of unsuccessful surgeries to fix other related problems...but no matter what, whenever the surgeon mentioned an ostomy my mother screamed No.
I suffered horribly, without a life, til I turned 18, took my health matters into my own hands and contacted a colorectal surgeon.
He offered me a choice of different surgeries, all with total collectomies...it boiled down to an outside bag or a continent ileostomy (the j pouch did not exist in those days)...
The k pouch was the miracle that I had waited for my whole life. Can't say that I have had an easy ride...there have been good years (about 20) and some bad ones but mostly I can say that I have never regreted my decision.
I only wished that the surgery had existed 10yrs earlier...it would have saved me a whole lot of horror.
I cannot pretend to give you any advice...each person's story and path are different but life is too short to waste...if this is an eventuality and there is no other choice then move foreward with serinity...
Sharon
skn69
P PSHMember
I wanted to follow up, and give everyone who posted a big "Thank You," for your insight and wisdom, and for helping me turn what started out as an extremely scary journey (due to my first referred surgeon - and almost deciding NOT to have surgery per his attitude and demeanor), into a procedure that I'm actually extremely excited about (though still slightly anxious for obvious reasons of its severity...) Sue and Bec especially for planting the primary seed...

Let me elaborate. I posted this panic on Tuesday Sept 30, immediately following my consult with the first surgeon referred here locally in SC. I read all the responses on this forum. Pondered it a day or so... then just picked up the phone Thursday afternoon and called Duke University. I was connected to Elaine the head RN for the Endoscopy Division (luck?). I explained my entire story, my experience, my fears, and my situation. Within 4-5 hours, she had cornered the head of the Chief of the Endoscopy Division for Duke, who immediately referred me to the surgery division (That was Friday Oct 3). I faxed my file to Elaine Monday morning, Oct 6. Monday afternoon, I received a call from Dr. Julie Thacker's scheduler and assistant, one of leading Colorectal surgeons on the east coast. By 3pm this afternoon, I had my pre-op consult scheduled for next Thursday with the Doctor, the Anesthesiologist, and the Ileostomy RN. In under three business days, Dr. Thacker and her assistant at Duke worked me into her surgery schedule, now for Nov 5 (only two days after my prior surgery was scheduled.

It took me a month to get in to see the initial surgeon who made me feel horrible about the process, and nearly scared me out of making the decision. It took the AMAZING, EMPATHETIC, and CARING team at Duke THREE DAYS to get me scheduled with one of the top surgeons on the east coast, and one of the foremost specialists in ileo pouches.

Her bio is amazing, and her reputation is to go above and beyond to maintain a strong patient/surgeon relationship. Additionally she is a tenured Professor of Colorectal Surgery at the University and has done numerous studies, including one that stood out, and to me, just reinforces her empathy... Her team studied the pre-op process, and made it better, and from this they were able to cut the average post-op stay from 6 to 4 days. Unbelievable. Straight-up unbelievable and definitely someone who I'm willing to trust my life to... someone who cares to reduce the pain and suffering of patients post-op, and to help get them faster on the road to recovery...

Every single person I came into contact with at Duke was top shelf, and every single person went FAR above and beyond to help me. I've never had a better, more positive, interaction in my life with medical professionals.

Thanks to the team at Duke University, and thanks to all of you for your words of encouragement.
P
L LjzMember
Good luck! So glad you are going into this with confidence and a great surgical team! I am exactly one year from my first of 3 surgeries. I did have some complications with my temporary ileostomy, and am taking meds, Lomotil, and one for acid in my output, but I feel great now! Realize there will be some struggles, hopefully minor, and recuperation takes time. Having a good team makes all the difference! They will help you through it, and walk you through each phase! So glad you're moving forward! All the best!
L
W wsh6745Member
Congratulations on making that phone call. I think being comfortable with your surgeon is one of the most important things.

My story is a lot like yours. I was on prednisone almost non-stop and on Humira once a week (in addition to cortifoam daily and 200 mg of Imuran daily - the max doses of everything for my weight.) I was allergic to Asacol so it made me worse also. I started having trouble with vision and major pains in my right hip (ended up diagnosed as bursitis). I was rarely off prednisone, I would go into a flare, have to go up to 60 mg and taper down by 5-10 mg/every two weeks to try and get off prednisone. I could stay off for one-two months most of the time and would be right back into a flare. Finally, due to loss of bone density and continued pain in my hip, my dr said he could no longer, in good conscious, continue to prescribe prednisone.

When we were in his office discussing surgery, I was crying and he looked at me and said, "Wendy - do you realize how toxic these medications are that you are taking every day?" That was the point I accepted the fact that it really was time to have the surgery.

I have had a few complications with needing dilation, having an abscess removed and a few other minor things. Thankfully, I was off prednisone for about 4 weeks when we scheduled the surgery. They had me stop ALL other medications a month before surgery so I was terrified that I wouldn't make it to surgery without being in a flare. I did make it and they were able to do a 2-step surgery.

I am 8 months out from my first and about 6 months out from the takedown surgery. The entire process was much harder and more painful than I ever expected but it really was worth it. I had pains/complications with urination and other things for the first 4-5 months but each and every day seems to improve.

I have had pain meds since surgery but no other prescriptions at all. That is such a blessing. Now all I can think about when I think about my past meds is how "toxic" they were and how great it is to be off of them.

The other major thing is that even though you may have multiple trips to the bathroom each day - you can hold it. When I was in a UC flare, it wasn't uncommon to have to run down the hall to make it to the bathroom. Although I'm still looking for the bathroom location when I go to a new place, it's just out of habit and not because I need to know in a hurry. I've also just started making plans for the future. My husband used to say, "we should go to Florida in May..."(or something similar) and I would say, "sounds fun if I'm not sick."

I'm looking forward to continued improvements in my life and I wish you the best of luck and success with your surgery. It's a hard journey but you can do it. Better to do it now then wait until you are older. I was 45 and made it through.

Private message me anytime if you want to talk or have questions. Also know that there are some awesome people on this forum. I don't think I could have made it through all of this without them.

Good luck,
Wendy
W
Last edited by wsh6745
Jan DollarJan DollarModerator, RN, retired
What a great turn around! Even if a surgeon is technically the best next to God, if you do not feel that necessary rapport, or you feel like a hot potato being passed around, you are not going to come away feeling confident about your surgery. It is a special talent to be able to advise you of potential complications and pitfalls without making you feel they are likely to happen. Some people think the bedside manner is obsolete, but I feel that it is an important attribute in any physician. Keeps them grounded in their humanity. If you like your doctor things will go much smoother because the communication is there.

Good luck!

Jan Smiler
Jan Dollar
K KOBMember
quote:
Most people posting on this board are here because they are in the group having "issues"-the rest are off living their lives, and not posting on a support board.


As JJA posts, you get a lot more 'issues' posts on forums like this so it may seem there is a disproportionate number of problems. You also get people like you (and me) who are new to the game seeking advice and reassurance. I read (somewhere) that 40% of J-Pouch surgeries go off without issue, 40% have some issue, 15% have major issues and only 5% revert to a permanent ileostomy for whatever reason. If that's the case you are looking at 80% with no or minor issues. Those odds aren't bad compared to living with UC IMHO. AND as Dog says, no issues at all, that's where we'd all like to be.
K

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