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25 replies

I need advice regarding surgery

S SolominMember
Hello,

I am currently trying to get pouch reconstruction surgery. I have been seen by six different surgeons and one academic doctor (who reviewed my file).

They all leave the decision up to me. I want to have pouch reconstruction surgery (one of the options) because at my age (46) I am active enough and I do not want to live with a bag for the rest of my life.

The challenge for me is that I live in Montreal, Quebec, Canada and it has been extremely difficult finding a surgeon qualified for the surgery.

Monday, I saw one of the more experienced Montreal surgeons in this area who has done 4 pouch redos. She comes highly recommended from both individuals who have had intestinal surgery with her and my former pediatric GI with whom I am still in touch with. She must be around 50, and she trained under the best surgeons out of Toronto - Dr. Zane Cohen, Dr. McCleod, and Dr. Marcus Burnstein. The only problem she told me was the year waiting list. I cannot wait another year as I have already wasted 2 years of my life without any improvement and my quality of life right now is at an all time low. This Doctor works at St. Luc and is impressive. Her statistics for success are consistent with what I have been told by other surgeons - 80% success rate.

Tuesday, I saw a new surgeon at the Jewish General Hospital. My experience with the surgical department is not positive as it is because of one surgeon (JF) that no progress on my file has been made and two years of my life have been wasted (thank you very much JF). This new surgeon was only given my file 10 minutes before I showed up (thanks again to the pathetic surgeon who is looking after me), so needless to say she was not properly prepared for my appointment (again thank you very much Dr. JF!!!).

The new JGH surgeon trained at the Cleveland clinic in Florida, and claims that she has done 12 pouch redos. She is only 30. She did an examination and thinks that my pouch problem is more mechanical than anatomical (although it is a combination of both). Due to the fact that it is more mechanical than anatomical, she estimates the success rate to be 50% rather 80% all other surgeons have told me.

Does this make sense?

The new surgeon at the JGH is very friendly and did give me a good feeling. She told me all the colo-rectal surgeons at the JGH should be able to perform pouch redo without issue, even though it is complex.

Here is what I do not understand and this is the area of concern for me at the JGH - The head of the colo-rectal surgery department has done one in her career, and she is extremely competent. She made it clear that it would be crazy to operate on me due to lack of expertise. Now the new doctor comes in at age 30, with such surgeries under her belt and says it should not be a problem for her and the other surgeons to operate and do this procedure. This sort of contradicts what the department head has said. Should I be concerned because this raises warning bells to me?

I suffer from constant nausea, constipation,mild abdominal pain, and back ache (believed to be related to intestinal problems). The anatomy of my pouch is not consistent with a jpouch and is in a state that is unexplainable.

Both surgeons (Monday and Tuesday) are not certain that surgery will alleviate all my symptoms (nausea, back ache). I am not certain of this assessment. I think they are both wrong.

All the surgeons that I saw at the JGH (3) say my weight is a problem. I currently have a BMI index of 32 or 33 and they would like one between 20-25, which means a 40 pound weight loss. This is extremely difficult.

All the other surgeons have not mentioned my weight as being a major issue. I do not know who to believe.

I do not know who to trust, and have no one to turn to. I do know that I can no longer wait a year for surgery, and anything is better than the quality of life that I am currently experiencing. I am already suffering from depression due to the stress of all this and lack of action for 2 years.

This is my life we are talking about and I don't know what to do. I do know of Dr. Zane Cohen, but it seems the waiting time just to see him is at least 3 months.

Does anyone have any suggestions? I am currently fighting with the JGH for lack of movement by Dr. JF and have a file open with the ombudsman (waste of time since she is friends with Dr. JF) and have also contacted the Director of Professional services. The entire colo-rectal department is aware of this at the JGH. I even received a call from the local media as they want to discuss the issues I have with the JGH and Dr. JF, but I am going to wait a few days until the new surgeon provides answers as to surgery date and so forth.

Does anyone have any advice for me? This entire process and stress of it all is becoming overwhelming.

Any advide / comments would be appreciated. G_d, I hate the JGH. It is a sorry excuse for a hospital (actually the colo-rectal unit). I cannot complain about the Gastro unit because my doc there has been spectacular.

Thanks,

Solomin
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C chasingtime (Guest)
i would not start a fight with anyone in the field because you never know who knows who and you may get a bad reputation. call the cleveland clinic and ask about the 30 year old. they are spectacular there. 50 percent success doesnt sound too promising though. btw, who botched the pouch?
skn69skn69Member
Solomin,
I tend to think that it is a question of personality rather than percentages...some surgeons are optimists and give you great odds, tell you that success is the only outcome possible etc and then you fall off of a clif when things do not go the way they promised...others are pessimists and tell you that the odds are against you and the choice is yours and that you should assume all responsibility...so when the surgery is a success you are thrilled and so are they...the 3rd kind are the fatalists...what will be will be...are you willing to go through another surgery and live with the final results no matter the outcome?
I tend to fear the optimists...they always end up telling you (post-op when disaster has struck) that no surgery is without risk and well, what can you expect...There are no garentees...
The realalists are my favorites (Dr C) who warn you of the worst, hope for the best and deliver.
You need to go with your guts (sorry, no pun intended but...)...how do you feel with the surgeon? Do they inspire you? This person is going to be holding a scalpel over your sleeping body for a while...do you trust them?
Age is not always a criteria...Dr C did my k pouch when he was 33...some surgeons just have golden hands...so if you like the 30yr old then go for it but do not expect garentees...yours is a complicated situation and they hate to be too optimistic...just in case.
By the way, Dr C always warns me that I may come out with an end ileo at least 3xs pre_op including just before surgery...scares me to death but...
And yes, your weight always effects surgery...so does smoking.
Sharon
I ISeeUCMember
Solomin,

Sorry to hear you're having a tough time with your pouch and a less-than-great doctor. Most of what you're going through is outside my area of experience, but for what it's worth I'd look into whether the hospital has a program that can help you lose weight before the surgery. The thinner you are the easier it is for the surgeons to do their job, which can lead to a better outcome for you. I'd also ask your surgeon (if you haven't already) to explain clearly the benefits of slimming down before surgery, then work out a timeline to get down to an appropriate weight.

Good luck!
TE MarieTE MarieMember
I went from a BMI of 39 to 27 after the surgeries. None of my doctors and surgeons told me I had to loose weight before the surgeries.

For them to expect an ill depressed person to loose weight before they can do anything is stupid. I know that it is optimal to have a normal BMI but I know how hard it is to loose that weight. I agree with KiwiPoucher, that should not factor in. You do not weigh 300 lbs or something like that. I'm glad I had the weight to loose 65 lbs of prednisone weight as I literally had to force myself to eat. I'm still overweight with a 27 BMI and don't care if I ever loose down to 25 or not.

Have to talked with your GI about your problems with the surgeons? Maybe she/he can direct you to the best one and can work with them to help you. My GI and C/R surgeon discussed my case several times the last 2 years.

My first surgery 2nd anniversary is coming up on 11/2 and I'm still waiting for the recovery to be over.
TE MarieTE MarieMember
This is not very scientific or a reasonable way to pick a surgeon but I think you need to go with your gut feeling. If you are not feeling it then don't do it. Pouch can be all different shapes and work, they don't have to be in a J-shape, there's Ms and S's etc.

I'm not clear on what you need the surgery to correct and agree with you that 2 years is too long. If I were you I'd at least get on the year waiting list and let them know if there's a cancellation you'd be there ASAP.

Congratulations on your weight loss. That shows them how serious you are.
S SolominMember
I don't even know who to believe anymore. I am not convinced the diagnosis I received is accurate.

It is quite frustrating.

I have had my file reviewed by 7 surgeons in total.

One told me to forget about reconstruction surgery (I can no longer wait a year) and go straight to a bag.

It is difficult because the stress is really taking its toll on me. I am short tempered as well as hitting roadblock after roadblock and an incredible amount of politics. There are huge egos at work and I am getting no where.

They don't consider me to be a case that requires any immediate action and that i should wait until they are ready.

No surgeon seems to understand that my symptoms are difficult to live with, both physically and mentally.

I am young (46) and do not want to live with a bag the rest of my life if it can be avoided. I will do anything in my power for a shot at no bag.

The hardest thing for me is that I have a family and a young so who adores me. He really wants me to spend time with him, and due to the way I am feeling these days, I am missing out on things no parent should. He plays hockey last Sunday, and I could not go to watch. Normally I would be the first to volunteer. I missed his first game and you have no idea how upsetting it was. He was really disappointed too.

It seems these doctors have lost compassion and the human element. There is no excuse for that, and I wish they would remember why they went into medicine, which was more than likely to make a difference to peoples' lives. These people think they are gods.
S SolominMember
The cost of going to the US is too cost prohibitive. The Cleveland clinic has an on-line file facility where my file would be reviewed. However ,everythnig is about the money.

It already has been reviewed. The only thing is this all seems to be based on one doctor's findings.

The first doctor said my pouch is dilated, and overstretched; however other surgeons are not so sure; The first doctor was talking about pouch reconstruction. I don't even know if that is necessary as other doctors are not certain it would fix my symptoms.

All I know is at the momment I have difficulty eating solid food, no appetite, constipation, mild abdominal pain (cramps) and horrible nausea.

The nausea is the worst part. To aggrevate things further, I was at the emergency and i msut have caught something because my throat is killing me and my chest feels blocked.
skn69skn69Member
Solomin,
Any doctors over there specialised in laporoscopy? Just a throught but here they do all j pouch procedures from creation to revision via laporoscopy...it is much quicker, easier, less pain (if you do not count the gass) and a much quicker recovery...could you maybe see if there is someone who does it that way??? It would mean that they could reduce it so that it no longer flops over on itself...just a thought...these guys are no so much pouch specialists as they are laporoscopy specialists.
Sharon
S SubzeromamboMember
I know you do not want to wait a year but JGH makes me nervous. Personally, I would be more comfortable and relaxed at St. Luc's. This is only a gut reaction from my research. I have not stayed at either one.
Isn't the wait time in Toronto also a year?
On the other hand, if this new surgeon is really as good as she claims, it might be worth it to you to take the risk. Where did she do her residency? How soon could she do the surgery?
I missed out on a lot of my youngest son's activities because of UC. I know how heart wrenching it is to feel like an absent parent. He is now an adult and we have a wonderful relationship. Being sick does not have to mean your absence will hurt your relationship.
I am very sorry you are faced with such a difficult decision.
S SubzeromamboMember
Just an idea....
Could you handle a temporary Ileostomy for a year until you could have the reconstruction surgery with a highly experienced surgeon? Is the wait for that as long?

I had a temp ileo for a year and it was wonderful. It did not keep me from rock climbing, sports, sex or any activity I wanted to do. My energy level was great until previous damage from a perforated colon caused a couple of organs to shut down.
S SolominMember
At the moment, I do not have a good feeling with the JGH either. St. Luc seems like a better option.

I also asked about a temp ileostomy, and they said it was not an option either. My understanding is that there is only one chance at this to get this right, although it is not entirely clear.

The new JGH surgeon trained at the Cleveland clinic in Florida under Dr. Wexler. She mentioned that she was involved in 12 reconstruction surgeries (although not the lead surgeon).

Just for some history - I have had an ileostomy (1984 at age 17) before and it was hell, mostly because it destroyed my skin and the stoma was not put in the right place (the nurse who generally set the stoma was on vacation).

According to the Surgeon who is looking after me at JGH (if you can call it that), my original surgery was messed up / not done correctly (a diagnosis I question after reading the pathology report). The 2 surgeons who operated on me at that time (1984) were a surgeon who trained at the Mayo clinic (although probably not a lead like the new surgeon at the JGH) and the pediatric surgeon with no experience who assisted him. This sounds all too familiar at the JGH - New surgeon who trained under an "expert" but never was the lead surgeon working with a surgeon (another one at JGH) who never did this type of surgery before; seems to be same scenario as 30 years prior.

There seems to be a lot of politics and egos at the JGH - this surgeon doesn't talk to that one, they don't communicate amongst each other and they definitely refuse to reach out to surgeons outside of their hospital. It is strange since they all know each other, some on a personal level. I have seen a total of 7 surgeons and have been told by them that a few of them are personal friends.

By the way, when I had my original surgery, I think was the 3rd such operation at the French children's hospital (Ste Justine) in Montreal. All I can say is the treatment there by the doctors was incredible. One could not ask for better.

In fact, in an act of desperation, I contacted my pediatric GI as well as pediatric surgeon. They both want to help me and are reviewing my file. I am to meet with the pediatric GI within the next week. 30 years without seeing these gentlemen and they offer more help than the !!!!!!!! surgeons at the JGH. My pediatric GI must be around 80 and is world renown. My pediatric surgeon is checking with local hospitals in the French sector and will speak with colleagues regarding the surgeon I need. He mentioned that he knows of 4 surgeons qualified for the type of surgery (jpouch reconstruction), something the JGH claims does not exist.

In my opinion, I have been totally and completely screwed by the JGH and have wasted 2 years of my life over this. At the moment I am missing 2 days / week of work. Fortunately I work for a very understanding company (I have a very responsible position) and they have supported me without question.
TE MarieTE MarieMember
Solomin,

I just read about your nausea, back aches and abdominal pain and am thinking this might not all be caused by your pouch. Have any of the doctors and surgeons looked into other causes like at your pancreas, liver, gallbladder or stomach?

A lady I know has crohns, first diagnosis was UC, Her doctors had her on humira and prednisone, she was so weak and in so much pain she could not walk with out help. Her doctors said that was all they could, expecting her to suffer until she got over it.

Her husband took her to the Minnesota Mayo Clinic, and took her all around in a wheel chair. She has a pancreatic problem causing all of this. They are weaning her off of prednisone and took her off of Humira. It's not cancer and I'm not sure what it is. She is my neighbor's daughter and lives 3 hours from here. All I know is she was feeling better in less than a week.

Your pouch has been working for 30 years, that surgeon must have done n excellent job. I think it's great that they are going to help you find doctors that you will trust more.
S SolominMember
Hi Marie,

I question the diagnosis that I have received to date. When I had my surgery 30 years ago, there were 100% certain it was UC. My mother has Crohns though, grandfather colon cancer.

Some have mentioned that it is possibly crohns.

Interestingly enough, I never have or currently have symptoms that would indicate something for certainty - my bloods are perfect (although two different people read same report and one said I have slight anemia) and I have never had fever.

I know it is not cancer, gallbladder, pancreatitis or ulcers (upper GI track).

The only thing out of whack is the shape of my pouch. No one can explain it and this is the area of concern. I spoke at length with my pediatric GI and he said it is normal for pouch to change shape and adjust over time. Until I spoke with him, this was never mentioned to me. So, I do not know what to believe except I experience quite often symptoms for what I would call a partial blockage.

I am not on any medication at all and able to do anything I want. However, I do get periods where nausea is bad and do not feel like doing anything. Constipation does not help either. It feels like I push waste to a lower area on the small intestine and can't get it past a certain part.

Best way to explain is like a balloon that has more than one air pocket.

Now the latest surgeon says my pouch does not even look that dilated.
A Ant1982Member
I had surgery done in the UK - and I was lucky enough to have one of the most experienced and skilled surgeons here. In his opinion a surgeon isn't truly "proficient" at pouches until he / she has completed 40 pouches. This makes it difficult for most surgeons to get the experience they need as in the average large teaching hospital (in the uk) they are likely to do 2-4 of these operations a year. My surgeon has an excellent success rate and is confident that experience is key as men and women come in different shapes and sizes and there are different challenges associated with each. (e.g. very strong big men are supposed to be tricky to operate on as it's physically difficult to get through the layers of muscle around the anus etc.) I wouldn't go near a surgeon who had only done a couple of ops - in the UK they wouldn't be allowed to operate without assistance from someone who has completed more. They would still be a "trainee" doctor. Just my two pennies worth, feel free to ignore as you may be lucky!

Good luck with whatever you decide.

PS if you can afford it, consider travelling outside Canada for the op - this is the rest of your life after all.
TE MarieTE MarieMember
I agree with Ant1982. Can you get your CTscans, MRIs and whatever tests reviewed by an expert at the Mayo or Cleveland Clinics?

How can you decide what to do when none of the surgeons appear to agree and/or have little to no experience. It looks like whoever would be performing exploratory surgery. I'd suggest you make an appointment but think I remember someone on here talking about getting someone at the Cleveland Clinic to review tests, such as those above. If that doesn't work out then I'd make an appointment with them.

I went to Mayo in May and the bill was pretty steep as they wanted their own CTscan and Pouch Scope performed and my prior digital tests to compare them to.

Please hang in there and don't let anyone cut you open until they and you are confident about the surgeon's skill and what surgery they are going to perform.

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