Hi Deb, I hope you get some feedback regarding your sinus leak. I never had one, but I did decide to have my jpouch excised and now have a permanent ostomy. You are so patient to have done all you could to prepare for going back to a jpouch - eight years - so impressive! You certainly won't look back and think, "I should have done more." That's important when you are making the jpouch/no jpouch decision. Other than not being in love with your bag, are you satisfied with your lifestyle? Can you do most of the things you set out to do? Do you have bag issues I.e. skin sensitivity or leaks? Do you want to give the jpouch another chance and know that, if your issues exacerbate, your surgeon is willing and able to offer you another option? Try not to leave any question unanswered (I wrote everything down in a journal.) Sometimes there's just one thing on your list that's a deal breaker. Mine was "I've got to get off of this emotional roller coaster." It trumped almost every other entry for me. Get feedback here. It will all help you come to a decision. Good luck!

Debs, can you get a referral to a more knowledgable surgeon? The good news is that your current surgeon knows he's in over his head, and isn't doing anything destructive out of ignorance. The bad news is that he's paralyzed. Your situation is repairable, one way or another, but not by this guy.

I agree with Scott.

If the sinus has not healed since 2010, it is not going to. Water under the bridge, but your surgeon should have referred you to someone more experienced back then. The main question is whether your sinus opening is large enough for the free flow of stool back and forth. If so, you may be able to deal with the take down (if your sphincters are strong enough). Exercises only go so far. Actually using your sphincters will be the real workout. A lot of time has gone by for them to atrophy. If your sinus is very tiny, you are more likely for stool to become trapped and fester. This will cause constant infections and misery.

Again, you need to be evaluated by someone experienced with these sorts of complications. I would not be surprised if the issue with the sinus is what is contributing to your insomnia. I know it is a pain to refer to another practitioner in the UK, but I think that is your only option.

Jan

Thanks for your replies so far and input.

LambiePie - No I am not satisfied with my lifestyle, that is why I have persevered with this pouch. (I have not had the jpouch linked up ever). I pass a lot of mucus, and discharge (loop ileostomy), a life of incontinence pads is not what I want! I do suffer from a lot of leaks also, mainly it seems whenever I am going somewhere!! 

The Surgeon, is my second opinion - he did the operation, and is top in his field, however, I now think that with his heavy workload, he just did not want to redo it, so that is why wait and see, and he seems to forget how long it has been, even though I remind him, I have had Vaginal fistula inbetween also, so needed time for that to recover.

I have 3 choices not any of them I would like, as much as I want to try the pouch, I don't want it get infected, or suffer anymore mental anguish from the sleep deprivation and low energy.

Stay as I am, with ileostomy and possibly go for disconnecting the pouch, although I will still pass mucus. Yes I can do most things, but don't want to live with a bag. Body issues, I have had 4 surgeries, and stomach is a mess.

Try the Jpouch, risk the sinus leak - Jan the sinus leak is apparently contained, and yes it could get infected, but he says 50/50, would keep an eye on me,  hopefully my rectal muscles would get better , cope with the insomnia and sleep deprivation. Surgeon has said if it does not work, I would have to go for permanent ostomy, eg bum closed up. 3rd option. A major operation, I don't think my body can cope with either, again or want!

Scott - the Surgeon says it is not repairable, being where it is near the join. I know the Surgeon wouldn't do anything destructive, my case is more that being on the NHS, you get put back and put back if not urgent, so he has no urgency to do anything apart from lets see and wait!

Jan - the sinus leak as said is contained, but 50/50 risk of infection. Basically he doesn't know as he has not come across it before. I know operations go wrong, but if they cannot put it right. Also redoing, with very little rectal stump and scarring, that may not work.

As said I am years down the line, my health has not really recovered have Adrenal and Thyroid issues, and I'm alive but not living - anyway!

Hi Debs. I have no experience with sinus leaks, but have read about them in other posts on this forum. Cleveland Clinic in the USA is well known for dealing with pouch problems such as this, but travel and insurance coverage would likely rule out treatment at CC for you. Weak sphincter muscles were part of the reason I had to have my j pouch removed. You could have yours tested to see if this would be a problem for re-connection of your pouch.

I can well understand your desire to get rid of the bag. I had a temporary ileo as part of my original j pouch surgery and was glad to have it gone. When it was necessary to have my j pouch removed, I opted for a BCIR since I was strongly against having the bag. The BCIR has worked out very well for me, although a fairly small percentage of people have had complications. This procedure as well as the closely related k pouch would be options for you if j pouch re-connection is not possible. In some cases, an existing j pouch can be re-used in creating a k pouch or BCIR. There is a Dr. Ed Westcott in London who received BCIR training from my surgeon, Dr. Ernest Rehnke in St. Petersburg, FL USA and has intensions for performing that procedure in the UK.

Your decision on how to proceed is a personal one that only you can make. Be sure to do lots of research beforehand and consult with other doctors who have lots of experience in dealing with the problems you are facing. Best of luck in whatever you decide to do.

Bill

Thank you Bill for your own story, I am glad the BCIR has worked out well for you.

Having had the stoma bag now for 8 years, yes I want rid of it. I had to live with two bags initially - the stoma and external mucus fistula, for almost a year, so has not been easy.

I did mention about 2 years ago about Kpouch to the Surgeon, but he said they are lots of complications with it, and I am not at that stage yet! I will do some research thanks, and look up the Surgeon you have mentioned. The fact the Surgeon has said if it does not work -jpouch connected, I would have to have permanent stoma, but now you have reminded me if they can use the defunct jpouch to create Kpouch or BCIR, I would look into that also.

It is so difficult to decide, as I just cannot stay as I am. I do not want a bag for life!

This is tough and I can understand your frustration and depression.  I think advice regarding medical end of things by Jan and Scott were spot on.  I wish you could get to a better surgeon.  But, I wish for many things and they can't happen.  You did not mention your age (or if you did, I missed it) - I think that would be a factor - as in - are you up to taking the risk one last time for a j pouch and giving it all you've got (and it will take a lot of energy and determination to make it work); if it fails, can you say, "I tried it, I did all I could do, I must accept and go back to ileostomy" - it sounds like where you are the K pouch and other newer procedures are not options for you?  You are also dealing with other health issues - it all adds up over time. 

No one can tell you what to do - but I am wondering if you can find a good counselor/health counselor to help you weigh your options.  It might be worth money spent to talk this out.  I also don't know if you have good support system - a spouse or family who can also help you through this.  It is difficult when all the options are not great ones.  You seem totally fed up with the bag, and yet very unsure what the percentage of success with j pouch is.  I would feel the same in your shoes and I would get myself someone to help me with the emotional/medical/factual issues in order to make the decision.  Then, I know I've given it all the thought and consideration I can give it and have others' view to help me decide (as in a counselor - who might be able to help you see things more clearly for yourself). 

When I look back on decisions, the ones I regret the most (although I do not dwell in regret) are the ones I made on an impulse and without really doing all my due diligence (hard to do that as that in and of itself is exhausting).  When I truly thought things through the best I could with the information I had at that time, I can look back and say, "it did or did not turn out how I thought - but I made the choice with all the information I had at the time."  Another technique is using a "decision tree" to help you.  You might google it.  I hope you have friends, family, support to help you wade through your choices.  We are pulling for you here on the forum.

Hello Debs,

I wonder whether seeing another surgeon and getting some help from a different stoma nurse could be helpful. It sounds like you are not getting very good support at the moment. Having your bag leak frequently is not on! But, when you are tired and miserable, it's hard to problem solve. Maybe seeing a different nurse with a fresh perspective could give you a boost?

You mention you are in the UK. I have read that St Mark's Hospital has a specialist j-pouch unit. Haven't been there myself, but I did get advice via email from the pouch/stoma nurses there, who were very helpful.

http://www.stmarkshospital.nhs.uk/

But perhaps that is where you are going already.

All the best,

Sarah

Hello Debs, I'm in the UK too and if you're not currently being treated at St Marks then I suggest you ask your surgeon or consultant to refer you there.

St Marks is a Center of Excellence; apparently it's the only Hospital within Europe which specialises solely in Colorectal Surgery; in fact, during the 1970's the J pouch proceedure was pioneered there.

It's for such reasons why I decided on St Marks to perform my J pouch Surgery

I live a 4 hour train journey from St Marks and I travelled to each appointment by train.

Also, if in receipt of benefits, all travel expences can be claimed back.

In my opinion, you have the option to try the J pouch and if it fails, then consider the alternatives; if you opt for bum close now, you're eliminating the option of returning to as close to normal as you'll ever going to get.

I've not long had my j pouch and, on average I have 3-4, sometimes 5 or 6 BMs per day; rarely any night time toilet visits and there's never any urgency.

Throughout the day, I can go for a good few hours without a BM, in fact today, I've not had a BM since late yesterday evening.

During my time with a Stoma, I may have adapted well but I opted for J pouch surgery due to my feelings regarding body image.

I wish I was refered to St Marks much earlier and just maybe, I wouldnt have had to endure a Stoma for so long.

Debs, I see it has been a couple weeks since your post and I hope you are doing well and still keeping up with this forum. I am in the process of also considering a somewhat "elective" surgery to remove my j pouch and would be very interested in what you've decided or have done to try to decide regarding getting one.

I hope you have gotten access to or in the process of getting access to St. Mark's docs as your UK posters have suggested. The most important thing for you right now is getting assistance and advice from the most knowledgeable medical professionals to whom you can gain access. Other than self-care, I can truly think of nothing else as important as this given that you cannot continue "as is."

Whatever the best surgeon to whom you have access recommends will be your best choice -- if for no other reason than they would be the ones doing any surgery and providing post surgical support! My husband has been in the medical implant business for 30 years and is fond of telling people who ask him for recommendations that "the best implant for you is the one your surgeon is best at implanting." 

Best wishes!

Hello everyone - first of all so sorry it has taken ages to reply to you. I have had so many broadband issues, I am not sure what's going on, but for some reason I did not get your reply links, and it seems all my emails sent also have gone! Not sure where they are, not in trash, but nothing has been saved on server. So don't know where I am with what have sent.

Ok, again, thank you so much to you all who has given me your advice. I am now at the stage where I have decided (as it has been 5 years since the Jpouch defunct operation), that I going ahead and trying it, go in 6 May 2016. I would like it come out of one end, I know its going to be full on though (which worries me).

I know deep down this is going to be even harden mentally and physically to deal with than the leaking stoma bags, but have no energy to do, go anywhere else. I have v little support left really, as everyone moved on and getting in with life, that is also tough to deal with! (Angie) tried a counsellor at the beginning (no understanding), and psychiatrist, (v understanding) but he left, and the current people, are not good at all!

Although, thanks for the St Marks Hospital option, I will be definitely keeping them in mind. My trouble has been, because the NHS surgeon has had me going on for all these years (now knowing he didn't want to redo), if I dare to say anything, I had, said they have got my hopes up etc, and really to be honest the way I have had to live you wouldn't leave an animal to live like this. He also said if this doesn't work it would have to be permanent stoma.

However,  I will see how this goes. St Marks Hospital (Sarah - no its no living with leaks all the time/Strange - so glad your pouch is working, and have no effect on your sleep, and yes 9 1/2 years is a long time given no options) or Dr Ernest Westcott (BCIR-thanks Bill). will be options.

The Surgeon retaliates by putting incorrect information, and saying that no one in the country will reverse it. Therefore, if I went to St Marks at this stage, as my Surgeon is supposed to be the best, they would question it themselves and possibly not even try it anyway. The Kpouch and BCIR I will consider after this stage. The Surgeon up until recently also said that he has not ever seen this sinus leak anywhere in the world, but then he could sense I am not happy with the way things have been going, he started to say it has happened to other people, they just haven't been aware of it(?-v much doubt this statement!). What I am trying to say is it is v difficult to say anything to a Surgeon, with the slightest bit of criticism! Thank you JenJen - your husband is SO right! : )

I think I will try and get and speak to a Stoma nurse at St Marks, and get some advice, my local hospital nurses I don't feel I can go back to, years on.

I will try read some posts on the forum and update me on things I should do to prepare for the operation, as in foods/creams for sore bum, what to sort of expect.

Strange - when do you eat your last meal? Do you use thickners etc. Any tips/advice on this would be surely appreciated.

I will post my experience and hope for something to improve.

Thank you everyone Debs x 

got a k pouch, after way too many years of a failed j pouch, which has been fantastic.  if you consider it, go to the k pouch korner as there is mucho info on the site.  good luck, janet

Thanks Janet, I don't think I will waste a lot of time with the pouch if it causes too many issues, and will definitely look into the k pouch forum. Thanks also for your best wishes, it is nerve wracking and not looking forward to sleeping, or trying to sleep on a ward! : )

i should have added that the k isn't for everybody.  it takes some getting used to and the first two months were tough for me.  but it was a great change for me.

Hi Debs

As a NHS patient; you can choose which Hospital to visit for treatment; it falls under some legislation:
http://www.nhs.uk/choiceintheN.../Allaboutchoice.aspx

I wouldn't keep St Marks in mind, as a fall back option or a last resort; REQUEST A REFERRAL TO ST MARKS HOSPITAL NOW, AND WITHOUT DELAY!

Due to the complications you've already endured, you're an ideal candidate for a referral to St Marks.

After all, it's YOUR quality of life that's at stake and not the reputation of your Surgeon and your Surgeon wont be the one living with a permanent Stoma if further complications arise.

I never endured complications, surgical or otherwise; I opted for St Marks due to the reputation and accreditation, after all, St Marks invented the J pouch.

The first Hospital I was referred to; they stated they perform maybe 1 or 2  J Pouch procedures per year, which at the time, was of little concern; that is; until my Surgeon at St Marks stated that he and his team perform 40 to 50 J pouch procedures per year.

During my journey from UC diagnosis to J Pouch, I've found that every patient I've met along the way always has the best Surgeon, however, I've never actually heard a Doctor or Surgeon make such a claim in regard to their own abilities.

As I stated earlier, your quality of life is at stake, it's your body and what remains of your bowel and J pouch...... If you had new kitchen fitted and the workmanship was shoddy and poor, would you want the same installers back to rectify their mistakes or would such an experience have cause you to lose faith in their skill and abilities?

In such a scenario, it's only a shoddy looking kitchen, which can be easily replaced unlike a permanent Stoma !

I'm not saying St Marks Hospital will be the answer to your current situation but it is at least a second opinion from a Hospital that is regarded as a Centre of Excellence, one that pioneered the J Pouch and the only Hospital in Europe that specialises solely in Colorectal Surgery.

Initially, my Consultant at my local Hospital made the first referral to the Surgeon who I was unhappy with but then at my request, I was referred to St Marks.

So, rather than contact the Stoma or Pouch Nurse at St Marks, why not ask your current Consultant for a referral or your GP?
 
In regard to myself, I eat any time day or night; still follow normal set meals, such as Breakfast, Lunch, Dinner and a bowl of Cornflakes n milk or poached egg on toast (sometimes both) just before bed; just before bed can be any time after midnight upon till 2am, especially on a weekend.

I've always been able to eat what I want; only issue whilst I had temp loop ileostomy, was eating a bag of roasted peanuts; made my output very thick, I felt nauseous, had stomach ache, had similar after eating a banana but bananas been ok since.

I tend to take 2 to 3 Loperamide per day, but it all depends on output. If I know I'm going to be out longer than normal, sometimes I take an extra Loperamide capsule mid afternoon but it's not essential.

I swear by the use of ilex paste; I discovered it when I had the loop ileostomy, it was recommended by Jan from this very forum.
Not only did the ilex paste relieve and cure the broken, oozing skin around my Stoma within 3 days, it's also good to prevent and alleviate butt burn.

ilex paste is available on NHS Prescription

Sounds like great advice from the UK - hope you get much better really soon - Angie from the other side of the pond

Sorry again for late reply, been away for a few days, getting some time away before going into hospital this Friday. 

Thanks so much for all your comments again, Angie, Strange and Claire. Yes, I know what you are saying, and totally understand, and I feel I should have done this years ago now. At this late stage. As this Surgeon, 2nd opinion (who is supposed to be the best!) did the pouch operation, and kept me going on for now over 5 years with this sinus leak. Due to me questioning why they have kept me living this way, the X-rays not really changing in the past few years, but yet keeping me going on and then the Surgeon putting in the letter (to counter what I said as didn't like it!)  'no one in the country will do it', I just happened to see the clinic letter (normally I don't) I just haven't got the energy or will even left now to go and see someone else, who will read my Surgeon's comments, and will not reverse either, as this Surgeon has highly regarded reputation, St Marks will take notice of this. It will also mean more time, more  X-rays, tests, then the NHS cycle of appointments (3 months every time), before I know it another year has gone by, living the way I have to live..I am just so tired of it all, and my operation planned to go ahead as said this Friday, I need all the energy I have to cope with the consequences of the reversal.

I will just have to take it day by day, like I do now really, and have some - hope! I do feel disappointed that the surgeon has kept me like this, but believed what he was saying, then I disappointed in myself, that I should have researched and gone to see someone else, but I have so many other health problems to deal with, the main one with the chronic insomnia and extreme sleep deprivation alone is a killer.

Have ordered some ilex paste and I sure the Nurses will give me some Loperamide.

I do really appreciate all your comments and advise, and will keep you updated, and do some more forum reading.

Thank you

Debsx

as  22 year survivor of dukes b  cancer  i can give u a little insight ,,,, it took 2 yrs for them to make and connect my  j pouch  i have Gardners syndrome,,,, a year later i developed a leak from pouch to my belly button  revision,,,,, now 19 yrs later i am having it removed tomorrow  19 years of hell, no control and massive amounts of ant diarrhea  i  don't leave my house because all of the accidents Ive  had all these years, sleep  whats that  u wake up pretty fast  wen  you feel stool  running down , 4 sets of clothes a day ,,,, anything is better than this I will gladly  take a stoma even with all the  associated issues that come with it  at least i will have a life,,,,,, if its already messing up don't do it

Hope your surgery goes well - you know it will be tough - but you've been thru it all - and you will heal and hopefully feel much better - there seems to come a point only you can know - where enough is enough - and it's time to cash in the pouch.  I know you did not make this decision without going through agony - and I hope after the surgery and the recovery, you find that you can say, "this is much easier and better" - it's not perfect, but it's better than what I was going through.  Thinking of you.

surgery went ok the pouch was completely adhered o my abdominal wall which required an extra two hours to get it loose but i am at home now  illiostomy working great

Illegally.... 

Congratulations..... Welcome to my world.  It is better! 

Richard. 

glad to hear your ileo. is working great - and hoping you find the new world a better one - one never knows and it's a huge decision - but I like what Richard said - all pouchers should know as we age that at some point, we may need the ileo - and being on this site has helped me sort of keep that in mind.  I just want you to feel BETTER.  Please take care of yourself - glad you are past the surgery part!!

Illegal Healed - thanks for posting your story and the reality of it. I am really sorry to hear of all your problems you have had, and totally understand for going back to a stoma, 19 years is long time suffering and having to live like that.

I spend a lot of time at home myself, I have  a lot of accidents with the stoma (loop), now I have put weight on, I have a sort of dip in the area. I can change myself 4 times or more before getting out of the house, skin sore and the bags won't stay stuck. I went to bed the other night at 11pm, and then had to shoot out of bed at 11.45pm, change the sheets, and myself, and then try and relax to go to sleep, which is difficult enough.

If you don't have many accidents, able to get to a bathroom when ever you need it, the stoma is great at not impacting too much on your life - in some/most ways.

I am glad that your operation went well and the stoma working fine for you, and hope you can live a bit more normal life, so wish you luck with that, sounds like you deserve it after everything.

 At this stage, I just want it to come one end, and as I have persevered so long with this pouch, if I just try it and see, and then I will know, how to proceed. 

I rang the hospital up yesterday afternoon just to check my admission time, and my operation has been CANCELLED!, the Surgeon as high number of Cancer people, which of course I accept, but I have been waiting a long time for this.Apparently they said they sent a letter, but someone should have phoned to confirm it, but no one telephoned me.

Had to change all my plans, but this is the NHS! and the people in the Uk, will know that there is an issue (well deserved) with the Junior Doctors, so this will impact as well on things.

Hello Debs,

In regard to leakage and soiling.etc; when I had my loop ileostomy my Stoma Nurse said the products I've been using previously won't be suitable for the loop, so I persevered with the Stoma product supplied by the Nurse and I continud to endure leaks, discomfort and pain; for some reason, I was even told not to use the barrier spray, which I'd been using for years with great success.

When the Stoma products from the Hospital ran out, I had no choice but revert to using the Stoma products I'd been using before the loop ileostomy and, with great success; so for the first time in months I had no leaks what so ever; I felt secure and confident; this I continued upon till my takedown.

I used a Convertec Synergy 2 peice appliance which consist of a mouldable flange/base plate affixed over the loop/Stoma and adhered to the abdomen, which a bag is attached to; I used the self adhesive closed bag but ConvaTec also offer a clip on bag, either closed or drainable.

Prior to applying the mouldable flange over the loop/stoma, I would apply ilex paste to the sticky side of a Salts Stoma Collar, then I would apply the collar with ilex paste applied, over the Stoma and briefly press and hold firmly in place for a few seconds, then I would quickly apply the ConvaTec Mouldable Flange over the Stoma collar and Stoma, also pressing firmly in place for at least 30/40 seconds, before sticking the adhesive fabric down and attaching a bag.

I found it more suitable to use the 2 price appliances as the Mouldable Flange can remain affixed to the abdomen for 3 to 4 days, which helps prevents skin damage and it's more conveinient.

Once the skin around my Stoma had healed, I continued to apply the ilex paste to the rear of the Stoma collar as a precaution; I also applied the Cavilon Barrier Spray around the Stoma prior to applying the collar.

Debs, although you may not wish to hear this, your hospital cancellation could be a blessing in disguise, as it gives you the opportunity to seek treatment at St Marks. 

When I was refered to a local hospital, months was wasted due to cancellations and my surgeon seem reluctant to answer my questions, always too busy to speak, he even cancelled a pre assessment admission appointment, another 3 month delay, because I raised a question with my Stoma Nurse.

That surgeon, a well respected Cancer Surgeon, painted a very bleak picture of life with a J pouch, stressing that I've adapted well with the Stoma for nearly 9 years, what the hell do you want a J pouch for ?

He went on to stress that I could be using the toilet up to 8, 9 or 10 times per day.

It was my local surgeons reluctance which lead me to seek advice online and eventually to this forum.

It was replies to my post on this forum that lead me to St Marks.

One appointment with Prof Philips at St Marks made all the difference; Prof Philips addressed all my concerns and answered all my questions during the one appointment and a date for surgery was made there and then.

When I mentioned my experience with my previous  Surgeon, who Prof Philips knew, Prof Philips stated that he (my previous Surgeon) is a Cancer Surgeon and is use to removing as much as possible to save life; at St Marks we save Quality of Life and we only do what is necassary to maintain a Quality of Life.

Prof Philips went on to say that he (my previous surgeon) probably didn't want to do a J pouch procedure.

However, I know travelling to London seems like a lot of messing about but I believe it's worth it;  St Marks is so easy to get to by Train.

Debs, many replies to your original post seem to agree that your current surgeon is in over his head and you should seek an opinion elsewhere.

If your current Surgeon can't reconnect your J pouch or address your current issue, what's your alternative; remove your pouch and a permanent ileostomy ?

Regardless of what your current surgeon may say, it's your quality of life and your body and whether a private patient or an NHS patient; in the UK, surgery of this nature is normally carried by a NHS surgeon regardless.

strange posted:

Debs, although you may not wish to hear this, your hospital cancellation could be a blessing in disguise, as it gives you the opportunity to seek treatment at St Marks. 

When I was refered to a local hospital, months was wasted due to cancellations and my surgeon seem reluctant to answer my questions, always too busy to speak, he even cancelled a pre assessment admission appointment, another 3 month delay, because I raised a question with my Stoma Nurse.

That surgeon, a well respected Cancer Surgeon, painted a very bleak picture of life with a J pouch, stressing that I've adapted well with the Stoma for nearly 9 years, what the hell do you want a J pouch for ?

He went on to stress that I could be using the toilet up to 8, 9 or 10 times per day.

It was my local surgeons reluctance which lead me to seek advice online and eventually to this forum.

It was replies to my post on this forum that lead me to St Marks.

One appointment with Prof Philips at St Marks made all the difference; Prof Philips addressed all my concerns and answered all my questions during the one appointment and a date for surgery was made there and then.

When I mentioned my experience with my previous  Surgeon, who Prof Philips knew, Prof Philips stated that he's (my previous Surgeon) is a Cancer Surgeon and he is use to removing as much as possible to save life; at St Marks we save Quality of Life and we only do what is necassary to maintain a Quality of Life.

Prof Philips went on to say that he (my previous surgeon) probably didn't want to do a J pouch procedure.

I know travelling to London seems like a lot of messing about but I believe it's worth it;  St Marks is so easy to get to by Train.

Debs, many replies to your original post seem to agree that your current surgeon is in over his head and you should seek treatment elsewhere.

If your current Surgeon can't reconnect your J pouch or address your current issue what's your alternative, remove your pouch and a permanent stoma ?

Regardless of what your surgeon may say, it's your quakity of life and your body and whether a private patient or on the NHS, in the UK, surgery of this nature is normally carried by NHS surgeon regardless.

 

That's a good post.  Very insightful to me and probably others. 

Richard. 

Hi everyone. Thanks again for all your input and advice. Things have moved on since my last post. To update;

Thanks again Strange for the St Marks advice. I telephoned the Consultants secretary up to ask how long wait for an appointment. I need referral from docs, this would be just over 2 months. I would also have to travel a long way also (live in the North). Anyway, a week after my cancelled appointment, the hospital rang last Friday to say they had a cancellation for Monday (just gone). So I decided to go for it. As previously said I have been waiting another 3 years since my last opportunity of reversing the stoma and using the Jpouch that was formed back in 2010.

I saw my Surgeons' Fellow Surgeon before and after, went through everything the risks, the possibility of having to make cuts in the stomach, and all the downsides of the surgery. (First time meeting this guy, who had whatever time to pick up my extensive notes to read before coming into the room)

I was more or less last on the list, so waited all day from 7am to 5pm to go to Theatre. I woke up around 6pm, to put my hand down to feel my stomach - and my bag was still there. At first, being groggy didn't realise it, but then devastated to find out it had not been done (again -like 2013). I waited for the Surgeon (who has only just joined, he is there for a year (to become Professor). The details are a bit vague, but they decided not to do it because it was high risk, due to the sinus leak (this we have known all along-but I was willing to take the risk, as said cannot continue to live both ends - anymore!). He also said that on examining, he got my Professor Surgeon to look also, and another Surgeon (who happened to be my first Surgeon who did the subtotal colectomy back in 2008). Anyway, he said that on feeling the pouch and the join, it turns out the pouch was stuck - now will have to check why back in January at my 9th EUA my pouch has always been ok, but now a few months later they say it has become stuck. I realise this can happen anytime but the pouch over all these years has been fine (so I have been told).

I came home that night, devastated it has not been done - after waiting and living with both ends - Yes, I realise and this is what they are saying - they cannot risk any harm, ( I know this, but was prepared to take the risk of having persevered with this pouch- so now have to see them back in Clinic, and start all over again. The options, know doubt he will say the say options I had in 2013;

-which is stay as is 

-disconnect Jpouch - but this would leave me with passing mucus still (this is a problem) 

- permanent stoma and bottom sewn up 

Don't really want any of these. I asked him to re-do it back in early 2012, and again in early 2013, but the  started to say that with scarring, and not enough rectal cuff, the chances of success doing another are slim.

or can they un stick the pouch?? Is it because it has had no use?

I did mention in 2013 about Kpouch, and he says I am not at that stage yet, and there are many things need to be done to improve Kpouch operations.

I see Surgeon back in clinic, end of June 2016 - just over 6 weeks away.

What to do?

I am just really disappointed with the Surgeon, and really myself, for believing the Surgeon, and have just wasted another 3 years of living the way had to live, and back to square one. 

To add;I have now some Ilex Paste and Orabase, and going to try that to try at least cut down on some stoma accidents, which is also unbearable : /

Hello Debs,

I'm sorry to hear of your recent experience and we all know what you're going through, although not exactly the same, we all have our own version, therefore we can empathise.

However, regardless of distance and the dread of travel; I believe now is the time to seek treatment at St Marks, otherwise, your Surgeon may do what is most suitable for theirself rather than what is most suitable for you.

Thanks Strange, yes I know everyone on here has so many problems, I feel for everyone who is going through it, I find it hard to read some of the posts because of it, and do hope people's issues get better. This site is so good for support.

There are a few things I am hesitant about with St Marks. It is a long way, but costs will come into it too, I am not working, and do not get help with costs. I have spent a lot of money on my health (have other issues besides this).  It would take a whole day to get there and back.

I am unsure what St Marks can do for me, now? I just cannot go through the whole NHS cycle of appointments, and for the Consultant in the end to agree that it is high risk. I have just had 3 Surgeons look at the pouch under anaesthetic who all agree. Even if he says he will do an EUA to re check, this will mean, added time, eg. wait 2 months or more for appointment, then wait another 2/3 months for EUA, then go for Xray Scan later, then back to clinic, then if anything to be done, wait another 3 months etc. Then another 1 year 1/2 gone by.

I am sorry if I sound so down with it all, but I am just so fed up of going to all these Consultants, plus other for my other health problems, and get no where.

Perhaps St Marks would re-do the Pouch. Again, the risks it may not work.

I think I am just so tired, and cannot think straight, and anyone is going to see the Records, and it is high risk if there is a sinus leak to begin with, but if anyone on here as had a pouch that has been stuck at all, can comment what they did to rectify this? must be stuck to the join think he said?

I take your point about the Surgeon doing it for themselves and not for me. I do believe that now, that he didn't want to redo back in 2012, so we kept persevering with this pouch, and twice now hasn't reversed. I have to accept that they 'first have to do no harm', but the mental aspect of telling me, on few occasions, how do I feel about getting it reversed, I get my hopes up, and then let down again, up and down, up an down..

It may be worth getting the referral and just at least speaking with the Surgeon, but if I have to wait another 1 year or 1 1/2half just to be told the same thing, mentally I can't cope with it.

Oxford I believe also has a pouch specialist hospital and one of the surgeons Professor Neil Mortensen is regarded as one of the best in the country and is the go to man for pouch issues so if oxford is easier to go to then that might be an option too.

im so sorry i remember waking up  many times as u feeling my stomach and crying when i was younger hugs 

Rather than you decide what St Marks can do, why not let the specialist at St Marks decide what they can do for you,

St Marks is a world renown Hospital which specialises in colorectal surgery and, as such see patients like yourself every day, unlike your current surgeon, who has probably only ever faced a situation like yours once, maybe twice.

In regard to travel expenses, if in receipt of benefits, all expenses can be reimbursed at St Marks on the day of an appointment, in cash.

Also, the IA Support Group offers grants for Ostomy members, normally for items not normally provided by the NHS but I can't see why you can't apply and use it for travel expenses.
http://www.iasupport.org/about/welfare

I drive and tend to drive at every given opportunity but during for my second visit to St Marks, for whatever reason, I had to go by train, can't remember why and it was so much easier, therefore, every visit thereafter was by train.

At the time, a return ticket, booked in advance, cost in region of £60 plus about £4 for travel on the London Underground.

When I was discharged after my pouch creation, St Marks organised an Ambulance to take me to Euston Station, I was even took to the platform by wheelchair and upgraded to First Class.

At my destination, a rail side buggy collected me from the train and took me to the Taxi rank.

During my first appointment at St Marks, my Surgeon offered a date for Surgery within the next 3 months but because I still had my doubts, we decided on a date 6 months later but looking back, I wished I had opted for the first date now.

Since pouch creation, I only returned to St Marks once for a scan and X ray, to ensure the pouch had healed correctly and wasn't leaking.

Since takedown, I've only returned to St Marks twice for follow up appointments and it was agreed that the last appointment I didn't actually need attend due to traveling distance.

I've since been discharged from St Marks and from all other hospitals that have I've been under.

The point I'm making, is how quick my initial appointment came through and how smooth the whole process was, including travel; had I had pouch Surgery on the first date rather than 6 months later, the whole process could of been completed within 8 or 9 months.

I know, by now, you're feeling thats another 8-9 months of appointments/treatment and traveling miles to a Hospital, which may seem daunting; but by what you say, this is a once in a lifetime opportunity to return your bodily function to as close to normal as you'll ever going to get, otherwise, it's a Barbie bottom and a Stoma for life.

When I had my colon removed, 6 months later i was told reconnection wasn't feasible; at the time, I had to accept there was little I could do about it but now, years later and I have a J pouch and I'm loving it.

St Marks may not be the answers, they may concur with your current surgical team, but whatever, their findings and especially due to your current complications, you're much better off transferring your treatment to St Marks due to their reputation and expertise; after all, St Marks pioneered the J pouch.

http://www.redliongroup.org/j/pouch-help

Thanks Strange, again for your input. (Apologies for delay again, I have problems with broadband, and when checking emails have to wade through all spam, to see what's what).

My appointment with this surgeon is next Thursday, and I will see what he has to say then, and take it from there. Obviously I am not happy with him, but he says that he can first do no harm. Which I have to accept, except that this has been going on for such a long time, as said above.

Regards to the help with expenses, I am not on the right benefits to qualify. Unfortunately, I was self employed, and get ESA Contributions but not Income based, where you get help with expenses.

Your story is, I think very positive and it is great that it has worked out for you so well, and take all your points about how easy it has been, you have been fortunate more than most , and sounds easy but I just cannot energy wise or mental wise go through all this, and get to a year or so on, and be in the same position. What if, and I am on a downer already with a sinus leak that could get infected, along with weak rectal muscles, that I have to end up always going to the hospital for treatment, and if it leaves me with the expense, and no support, I will find this difficult.

If the sinus leak is there, and have weak rectal muscles etc. I will consider getting in touch with St Marks after next thursday, and will post what the Surgeon says.

He will no doubt say, like you say Barbie butt and permanent stoma. but he said this 3 years ago, and then of course we have persevered with this.

I perhaps, like you said cut down the visits, and try do say appointments, scan in one day, but even now the travels costs -I just cannot afford - anymore. I have spent so much on all my other health problems. ( I will check out the ostomy help link thanks for that).

I just do not know what to say to the Surgeon, as any criticism is certainly reflected in the clinic letter. I am not happy he has kept me going on for another 3 years getting hopes up to go for reversal again, and then when it actually happens not do it again. I have had 10 EUA's now in this time, and affects my body and hair! I just do not know what to say to him!??? They do not like criticism.

When I spoke t him afterwards on the phone, he mentioned something about the pouch being stuck, so this is something else, as for the past 6 years it has been ok.

Again, my reservations about going to St Marks, if they read what this surgeon has said no one in country will do it blah blah.

Just don't know what to do. If I thought it was going to be straightforward, I could manage the travel/exp, but with my experience of NHS people, I don't have much hope on this front.

Will post his comments.

Thanks again Strange for your input, I welcome your experience and advice. It is so good to hear that you have had a reasonably good experience of all this, and not had to go back so much with any issues. : )

Hello again Debs

Sorry for my late reply.

I do hope all goes to plan this Thursday but you should tell your surgeon how unhappy you're feeling.

You need be more assertive and put yourself and your own needs and your quality of life first and stop worrying about your surgeon feelings.

I don't mean be rude or offend your surgeon but express your unhappiness and explain what you expect from surgery.

As I've said previously, it's not your surgeon who is living with a loop ileostomy or will end up with a permanent Stoma

Your meeting on Thursday is to discuss your options and you will eventually have to have surgery; all the risk you've mentioned are apparent regardless, so why not endure the associated risk at St Marks.

At present, all I'm suggesting is a second opinion.

At your request, your current surgeon or GP can make a referral and all relevant medical notes, scans and endoscopy photos will be sent to St Marks for Prof Phillips and his teams to view, then a date will be set for an appointment.

I've said many times that due to what you've already experienced, you're an ideal candidate for referral to St Marks, but only you can decide.

St Marks will not refuse to treat you; when I was there I met patients from all over the Uk.

I can't see why your current surgeon is making such statements, unless they dont want the eminent surgeons of St Marks to see their handiwork.

Thanks Strange and Claire so much for your input and advice.

I went on Thursday to clinic, and unfortunately my Surgeon was not there, but I saw the Fellow Surgeon who was going to do the reversal and decided against it, he got advice from my Surgeon (who is my second opinion) and the first Surgeon (who did the original sub total colectomy back in 2008-who said it was Crohns, then biopsy said err on side of colitis, said he would do the pouch, then 4 weeks later changed his mind and said no it err more side of Crohns, so won't do the pouch - in the clinic letter I can see now he has said he didn't think I could mentally cope with the complexities of the pouch - obviously he wasn;t going to put down how he has played around with me saying he would do it, and then take it back 4 weeks later!).

Hence, my second current Surgeon, who retested the bowel, and he decided No - it was 50/50 more Colitis, which is why he did the pouch (2010).

The Fellow Surgeon (who is only with this hospital until October 2016).

This is what he said:

- That when he put his finger in to check, the opening is tight, when he went a bit further in at the bottom, it felt 'thin'.

- The sinus leak is infected (not sure how he knows this - by looking? camera?

(the sinus leak has never been mentioned there is an infection, altho I did ask are you classing the sinus leak calling it an 'infection'. Hope you know what I mean.

I said I had an EUA in January 2016 - and it has always been good - he said no it hasn't - so I said - no the pouch has always been good but the sinus leak still there.(Sinus leak is contained by the join).

He then said that it is looking like Crohns - I said that this hasn't ever been mentioned crohns colitis debate since 2009.

He knows how disappointed I was./am. I told him that I had had now 10 Eua's and why go to the main hospital if it is no good!

I cannot believe that my Surgeon wouldn't have noticed how 'thin' it is. I will double check that he actually means the pouch itself.

He said, what did I want to do? Go for another MRI scan - last one done October 2015 - which he kept referring to, as this showed everything up, but again why take me and tell me we are going to try reverse it!

Did I want to speak with the Surgeon? I am v v tired and was pissed off to be truthful with him, said would make another appointment, which turns out to be another 2 month wait, end of August 2016. so that will make it another 4 months on from this failed EUA.

I told him I had had enough of the way of having to live with the loop and coming out both ends, it is not acceptable. I said i have told the Surgeon this. I said the notes are not a true representation of what has been happening. I said you have had to pick up  my extensive notes in a short time and do not necessarily know it all. He said he had gone through all my notes, and spoke to the 'horses' mouth.

(I refrained from saying the horse forgets what he says from one appointment to the other!).

He said I have the option to remove the pouch and have permanent stoma.(said cannot live with loop), and did not have my rectum removed to have my bottom sewn up.

I said I would ask Surgeon to re - do it - this has been mentioned since 2012, but again we have persevered with this one. He said this is very unlikely. possible not enough small bowel, rectal stump, and now.. using the crohns thing

I feel like I am up against them, as at the end of the day this has gone wrong, and I am not happy with what they have now just done, I am seen as difficult.

Also he said the pouch has stuck to the Sacrem, this is something else new that has come up. This wasn;t mentioned in January EUA  - so he said these things happen, and yes they do, but I have gone 6 years and within 4 months, got stuck!

I asked for him to send me a copy of the clinic letter,which he was surprised at, but this is because I know now how they put their own spin on things.

My Surgeon, is wel renowned all over the country, top of his field. Again, no criticism allowed towards them, but quite willing against me. 

I can only go by what I have been told in the past, but this seems to go out the window every time I have an EUA or go for Scan/Xray.

I am so depressed anyway, not sleeping, and disappointed that these things have only just come up now. I am going to ask the Fellow Surgeon to put in writing to me about the -thinness, the sinus leak infection (how has he seen it-do I do anything about it? never mentioned anything?), the pouch is stuck!, and now the mention of Crohns' after all these years. Is that an excuse not to redo anything?!

I don't know..

Even the secretary was cool with me, loyalty misplaced!

I can ask for the notes and copies and ask for refer all to St Marks, but my concern like I have said before is, this Surgeon, will just forget how much he has pissed me about, and say like he has said - it is too risky to do it. which i have to accept this, but why why have me going on like this.

If anyone can comment, about the 4 things to say to the Surgeon. 

Thanks Debs x

Should add, can stay as I am - said can;t do with a loop, and if disconnect the pouch I would still pass mucus. He said not if you had perm stoma and bum sewn up. Said this is a major operation, that also could go wrong.!

Hi Claire and Strange

I have been to my Gp's this afternoon, and asked him about getting a referral to London. 

He said if it is out of the area he has to apply to the CCG for this. Then he writes to the Surgeon and gives back ground history. I asked him whether he had to mention which Surgeon it is I see, as I do not wish my Surgeon to know about this, until I am ready myself to decide, if this is the way I will go.

The Gp said the Surgeon will see it on the system, but I said not, if it is not in his own hospital notes or at the same hospital.

I will have to do some research on the BCIR that was mentioned earlier also, to see if this is an option.

My next appointment with current Surgeon is end of August 2016, so I don't want to get his back up before speaking to him, if he finds out I gone somewhere else, undermining him. Yes I know I am the patient, living with this, but I know how things are with these Surgeons!

Can I request for some Privacy on not letting my current Surgeon know (at this stage) what I am doing)?  I know it is different story if you are a Private Patient and paying but NHS and all that, I need the CCG to fund it first, in my past experience over medications, I have not been in luck at all with the CCG.

Thanks 

Thanks Claire! It will be a bit of kick in teeth for him, as he is my second opinion for doing the actual pouch, and he had to 'fellow' surgeons check over this pouch at the time of my EUA, so had 3 people look at it, and that is what they came up with. I am not really that much forward, it is a start, not sure of got the energy to follow through with it all, time and expense. I just don't want to ruin it where I live, and main hospital. 

My normal Surgeon has already said in a previous letter - no one in the country will do it, due to sinus leak, and now this fiasco, so I don't have much hope, unless I go for the Kpouch/BCIR option. 

Thanks for quick reply x

Hello everyone - I am just having a look at the BCIR and pouch options, and it seems that that BCIR is slightly better than the Kpouch?

As I have a failed pouch, sinus leak and weak rectal muscles, and have to apply to local CCG for funding to get a referral, so can't waste this application. Is it better first of all to go to St Marks London, and see what if they can do something with this pouch (even though my Surgeon hasn't done anything - apart from wait and see approach, or can't do anything about the sinus leak, bearing in mind they are changing the diagnosis to possible Crohns now).Have a possible re-do if they will, if enough small bowel, but they could possible rule out if Crohns?

or just give up on the pouch idea - like Strange says would really like to go to the toilet the 'normal' way if possible, but if this is going to cause all sorts of problems before even started, should I go straight for BCIR option?

Sorry, so tired and unable to take a lot of the information in. I just don't want to be turned down by CCG funding for referrals out of the area, and have to keep applying.

any advice welcome thanks