Solomin,

Sorry to hear about your predicament; nausea is one of the worst things to have to deal with on a constant basis. Is your output normal? You're sure you haven't developed a blockage?

Have you tried ondansetron? It's quite expensive but might be worth asking your doctor about, especially is Cesamet isn't working.

It's ridiculous that you have to wait a year! Why is the waiting list so long? Can't you go to a private hospital and have the government pay for it if the waiting list is too long?

solomin.
any thoughts as to the cause of nausea? dehydration? any other medications you are on that could be causing nausea? see if maybe you can solve the problem rather than just the symptom.

Constant nausea is horrendous, brings me back to my UC days.. even when I was in so-called remission.

Hey Liz,

The reason why I have nausea is because my j-pouch is not functioning properly. Besides it being over stretched, the anatomy is out of whack. My doctors don't understand why it is in the shape it is.

Since my pouch is not functioning (I am constantly constipated with very little feeling when I have to have a BM), I tend to get backed up (no blockage), leading to nausea.

Thanks,
Solomin

Sorry I don't have any advice for you. But, a year?? This sounds serious enough that you should not be waiting around that long. Isn't there anything you can do to get this done sooner?

The only way I can expidite the surgery is to be reassessed.

I am able to function, work and do the things I enjoy doing with a little inconvenience (due to this problem). There are others in worse shape then me that cannot function. I do not fit into the "urgent" group.

I think it is ridiculous the amount of time. I have to wait.

I am in a difficult situation. Only a handful of surgeons have done pouch reconstruction; none exist in the province of Quebec (I live in Montreal); I have to go to Toronto for the surgery

It is very important that the surgery be done by a doctor with experience, because it is quite risky (70-80% success rate) and a failure would mean a permanent bag.

My surgeon in Toronto only gets 4 days a month in O/R; his priority is cancer patients (last minute, not on surgical list). There are 49 patients ahead of me. Take into account last minute rescheduling and so forth, and we are probably talking two years.

My Toronto surgeon's secretary suggested I try other hospitals.

So, if you have any advice, it would be great.

Thanks,

Solomin

Wow...Solomin to have to wait so long.
I too have nausea (not as often as you) but no one ever told me it was related to UC or j pouch. I had my takedown on 4/30/2012 with complications. Still get nausea once a month even with the new j pouch. I take dexilant 60mg for stomach and that seems to help me out. I like anything with ginger that seems to help me out, too. Hope this helps! Best wishes for you!
Roberta
UC 2007
ileostomy to j pouch 2/29/2012
takedown 4/30/2012

Solomin,

I have friends in Montreal and I hear about these wait times and it sounds ridiculous. It seems like there is a severe shortage of qualified surgeons in Canada. I think I know the reasons for that, but I am not interested in usurping your thread with a political debate.

To me, nausea is something to be taken very seriously, especially if it is constant. It is your body's way of telling you there are toxins present that do not belong in it. I don't have any particular advice except perhaps to make some noise to whatever individual is assigned the task of determining who gets surgical priority.

Good luck.

Solomin are you sure the nausea is from the pouch being too large. My jpouch was too large along with other anatomical problems with it. So and i had many functional problems from it. But fortunately for me naseau wasnt one of them.

How abou you somehow get sicker so you can become a more urgent case?

Solomin-

I am sorry to hear you are dealing with this. I developed a condition called Gastroparesis within a few days of my take-down, and have had daily nausea and vomiting for 2 1/2 years.

There are various medications that can help, but most of them do have side effects like sleepiness or dizziness or constipation. Personally, I have found Zofran/Odansetron to be the most effective without making me feel like a zombie.

However, I think many non-pharmaceutical options are quite effective as well. Many people use ginger or peppermint to quell their nausea, but I have found citrus to be more effective personally. I can get relief simply from smelling limes; on bad days I juice one with my bare hands so I can frequently smell it without having to carry it around with me. Pregnant women have sniffed cut lemons for years to help with morning sickness.

Since it is going to be so long until you get help with your pouch, is there a possibility of taking a pro-motility drug to help things move through faster? Motillium/Domperidone is one that is used pretty frequently, and I am assuming that you aren't taking anything to slow down your pouch since you mentioned constipation.

I wish I had a great answer for you!

Sallie

Hi Everyone,

Thanks for all the information and comments.

My situation is a bit unique; I was one of the first to be operated on (actually I think #3) at the Ste. Justine hospital (French Children) in Montreal on January 5, 1984. I was 17 at the time.

Fast forward to present and I am have some issues. Upon examination, the anatomy of my pouch is out of whack; no surgeon can understand why my anatomy is off. On top of that my Montreal surgeon also determines that my pouch is over stretched.

Continuous Symptoms (not all the time though) include nausea, stomach ache (mild), back ache, and constipation. What is funny is that only people with a colon can have constipation. My surgeon says don't it that for people without one.

The constipation and nausea is directly related to the shape of my pouch; I hardly feel when I have to have a BM, so OI get backed up and experience symptoms. I believe my back problems are also related, but I have yet to meet a doctor who thinks this is a possibility.

It could be worse as for the most part I am able to function (work), and do recreational sports without any limitations.

Heck, I am even able to be around my mother-in-law (for about 10 minutes) without any pain!


Solomin

Now for the other issues: surgery

I have been seen by 5 surgeons; All agree that if I want to get rid of my symptoms, I either go for a permanent bag or try pouch reconstruction.

Since I am relatively young (46), the recommendation if I decide to move forward with the surgery is pouch reconstruction.

No surgeon has pushed me or even encouraged me to go forward with the surgery. The explain all the risks, and leave the decision up to me.

So I want to proceed with the surgeon. I am told that it is extremely important to find a surgeon who has done jpouch surgery before. My surgeon here is Montreal tells me that he does not know of any surgeon in Quebec who has done the surgery. He has never done it either. However, I have full confidence in my Montreal surgeon. I tell him I would like him to do it. He agrees and he schedules me (3 months).

My Montreal surgeon sees me a few times as my data approaches, and something is wrong; he is getting cold feet; He tells me his peers (another surgeon in his department who has done one jpouch reconstruction before) that he is crazy to consider the operation since he has never done it before. He cancels the surgery.

I see him a few times again and he agrees to the surgery and then cancels again because he is uncomfortable with the surgery.

In the meantime, I waste over a year on this.

My Montreal surgeon tells me to go outside of Quebec. With no help form him, I find 3 surgeons in Toronto who can do this surgery (funny thing though is my Montreal surgeon knows all these doctors). I arrange to meet a Toronto doctor and decide to proceed. After being on a waiting list for 10 months, I ask what time fram we are talking and I am told 49 people in front of me.

It gets better. I go to my Montreal surgeon, and I ask him if he has any suggestions. He says let me speak to my colleague. He steps out to talk to his colleague, but they have issues with each other and don't communicate. He can't ask his colleague (who knows all the Toronto surgeons in question personally) a direct question. He has to word it in a way that his colleague will "offer information". His colleague says go to Toronto.

While all this crap is going on, I am also doing research on my own to find a surgeon. Someone on one of the many groups suggests a local French surgeon. I get up an appointment (end of October).

After being with my Montreal surgeon for all the years, trying to get the surgery done for the last 2, my surgeon recommends this French surgeon. Why it took him years to think of her (and he knows her well). Interesting he provides her name after I find her on my own.

So, my Montreal surgeon emails this other surgeon, but again he says "he has to word it is a specific way". All I want to find out is if this surgeon has done jpouch reconstruction surgery. For some unknown reason, again he can't ask a direct question like "have you done this type of surgery before?" - no he has ot send it in code because these surgeons don't communicate with each other.

Do you think this story is over yet? Of course not! In order for me to get any type of surgery outside of the province of Quebec (and have the expenses covered under the provincial medicare plan), my surgery has to write a letter to the provincial health care board.

I cannot write the letter. There are no forms to fill out. My surgeon has to write the letter and it has to be signed by one of his colleagues (other surgeon).

I am waiting two years for this letter to be written and sent in. My surgeon has written the first line.

I tried the ombudsman, who spoke to my surgeon (6 months ago) and I thought things were finally moving.

No progress.

So, in Montreal, I have a surgeon that cannot communicate with his peers for some strange reason; is incapable of writing a letter; has no idea how to put me in touch with an experienced jpouch surgeon, and does not answer calls to patients.

I have been very patient with my Montreal surgeon, never pestering him. After 2 years, I do not think it is unreasonable to contact his office and ask for this letter to be sent in.

Sorry to vent like this! This whole story is a soap opera!

- Solomin

quote:

I have been seen by 5 surgeons; All agree that if I want to get rid of my symptoms, I either go for a permanent bag or try pouch reconstruction

Did you communicate to all 5 surgeons the constant nausea symptomology? Because I sort of have the same question as liz11 as to whether this nausea is necessarily due to a pouch structural issue. I have had 2 J Pouch revisions which corrected a mechanical issue with my pouch when it was not emptying correctly. Prior to these surgeries I NEVER had any nausea. My concern is that the nausea could be due to something else and is mistakenly being blamed on what you think is a mechanical issue with the pouch.

In any event the narrative you have provided in terms of your medical care is outrageous. I hope that this issue can be treated swiftly and competently for your sake. Good luck Solomin.

Well, I have had so many tests that I refuse to have more or be tested for the same thing again:

endoscopy
rectal exam
Pouch examination
barium enema (pouch defacography)
upper GI
Ultrasound
X-Ray
MRI
CT Scan
blood tests galore

All test negative in terms of ulcers, pouchitis,gallstones,kidney stones, and inflamation.

They way I feel at times, it is like I have a partial obstruction. If this is the case, the backup is probably what is causing the nausea.

So far, I have never vomitted from this feeling, and it has 20+ dince the last time I threw up.

Determining the cause of nausea is quite a challenge.

As for the five surgeons, each one received my file from my first surgeon. They have all read that I experience nausea as well as my explanation when I met them in person. Based on the facts (and minor examination) tI guess they assume it to be from the anatomy of my pouch.

Thanks,

Solomin

Are you also under the care of a gastrentonologist doc. I found that a good gi doc was more helpful in my diagnosis and treatment of a problematic pouch than a not so great surgeon. Also i learned that many of the tests such as the ones you listed were useless if they werent done or read by someone who was very experienced with jpouches.