Hi

Im new here. I have just made the decision to go from the Ileostomy to a j pouch after being fit and healthy for 33 years and getting very ill over a short space of time. 

I did live in London, now just outside in Surrey but travel into Richmond borough area most days to work. I would be grateful for any feedback from people who have got a j pouch and what to expect. 

Thanks again

Dean

Hi Dean, I am in London a lot, and did live there, although am now based on the south coast. What surgery have you had so far? Have you lived with a bag for a long time? I had UC, and first had surgery in 1999, where I had all of my large bowel out and a ileostomy. They left the parts which would make a pouch for later, as being a 21 year old female at the time, they recommended having any family I was going to have first. That was the furthest thing from my mind at the time, but, 12 years later I have two lovely girls aged 4 and 7. I lived for those 12 years with an ileostomy, a very normal life. Last year in June, it was decided that it was finally time to either use the parts they had left to form a j pouch, or get rid of them and have a perm ileostomy. My care was based at Kings College hospital. I had the j pouch formed in June 2015. It was definately 'sold' to me as the best option long term. However, I developed an infection because of a leak along one of the surgical lines. A pocket of 'pre sacral collection' was trapped behind the pouch and my spine. This obviously delayed the pouch being connected up. Unfortunately Kings took 12 months to fix me, and that whole time I've had this serious Sepsis infection, and have been in and out of hospital, seriously ill. Treatment with antibiotics clearly wasn't working but they just couldn't seem to drain this collection. Finally, after seeking a second opinion, the surgeon from Kings pulled his socks up and used CT guided drainage to drain the collection; turns out he could have done that months ago. The internal area where the collection was, is now healing up, and My blood tests are all normal now. I feel a lot better but have been seriously through the mill and weakened by being ill for so long. I have decided to transfer my care from Kings College to UCH, under a new surgeon by the name of Mr Windsor. He wants me to heal up for a few months before doing anything else. The guy at Kings would have already connected up the pouch by now, healed up or not, and sent me on my not so merry way. Ironically, it turns out that I have a stricture at the bottom of the pouch, which needs sorting out before connecting anyway. This stricture is a serious complication and questions whether the pouch will ever drain well. Mr Windsor has said that he probably wouldn't have ever offered me pouch surgery, because this stricture is not new, it was evident before the pouch surgery. He said I have a low chance of having a well functioning pouch. The bigger irony is; I wasn't sick when I had the pouch formed, I had lived with an ileostomy for 12 years, very happily, because generally I was very well. I personally feel that 'if it's not broken don't fix it' - I.E, think very carefully about going through surgery if you already live with an ileostomy that has given you your health and life back. I've missed out on a year of my life, a year of my kids growing up, a year of running my business, and a year of living life...I wish I had refused the pouch surgery. So at this point, I don't know whether I will have the pouch connected or have a perm ileostomy. Whatever decision you make, make sure it's not just based on not wanting to have a bag...I can promise you that you can live a totally normal life with one. I worked hard and played hard for 12 years with a bag. I'm happy to chat anytime. Kind regards, Nikki 

Thanks for the response.

I was fit and healthy for 33 years then all of a sudden became ill in January 2014.

I managed to get an endoscopy in April 2014 when I was diagnosed with Crohn's disease from the pictures and biopsies taken.

I was first admitted to hospital 2 weeks later in May 2014 where I spent a few weeks in St Peters (hell hole) hospital and ended up on a concoction of drugs , Pred and IMixiflab infusions and I was ok until December 2014. In January 2015 I spoke to my then Crohns nurse and consultant from St Peters ( hell hospital) hospital who put me on azaphioprine and made my infliximab infusions every 6 weeks. 

I had to discontinue Azaphioprine as it made my muscles in my legs tighten and I could hardly walk for 2 days. 

I became so ill that I ended up back as an inpatient at St Peters (hell hole) hospital again. I was put back on steroids among antibiotics and given a loading dose of 4 shots of Humira and sent home after 2 weeks stay.

I stayed at home still ill where I was in bed for 2 weeks shivering but hitting high temperatures. The Humira nurse wouldn't come out to me as she told me that I shouldn't have been put on Humira with the other drugs I was on. ( Thanks St Peters for that!)

After being persuaded many times and not wanting to go back to that place I was rushed back into St Peters where they didn't have a clue what was happening.

i was so ill I couldn't eat. My tongue and throat was swollen.

at first they said It was a cardio problem, then they said it was a water infection and after a long debate and still getting no where I insisted that I be transferred to ST Tomas's Hospital in Westminster under the care of Dr IRving and Anderson who I had previously heard of researching myself.

St Peters nearly killed me and after having a row with the consultant there and the surgeon whom told me I would have to loose my intestine and have no chance of a Future J pouch I was thankfully sent on my way in an ambulance to ST THomas hospital. I was intact suffering from sepsis and put on 3 different antibiotics via drip. I was then put on Steroids, TAcrolimus and Vedolizumab as a last resort as there were no other drugs available and I ended up on insulin from steroid induced diabetes, refused to have surgery until I had exhausted all avenues. Had numerous infusions 

i had blood work done 3 times a day until I became so ill that after 3 months stay trying every avenue and becoming to ill to operate on I had to take the plunge and have my large intestine removed and an ileostomy performed. I had a fantastic team at St Thomas's and can't thank them enough for all they did for me.

That place was like staying in the best private hospital compared to St Peters but unless you've been to more than one hospital you have nothing else to compare them. 

After removing my large intestine the pathology report came back as Ulcerative Colitis which made me viable to have a J pouch. 

I put back on the 3 stone in weight I had lost and feel so well again.

I am living with the ileostomy at present and manage fine other than I don't dive or swim as I used to as I find it an issue with having this bag stuck to me.

i am hoping to go for the first operation in J pouch surgery in January 2017 .I have read lots of bad stories and a few good ones but I honestly feel that If I don't give it a shot I will always think what if....

Also either way I have to have a major op.

if I keep the way I am I will still need op to remove stump they left in and sew up ass!

so.....I've decided to go for the J pouch and if things don't work out I will have to go back to how I am now.

At the time of becoming ill I thought it must of been the protein shakes I was consuming and I was working all hours and going to the gym after work doing to much, running myself into the ground. 

I also have an active job as a self employed Plumber/ Heating engineer so could really not do with all the time of work with being ill.

sorry for rambling on I just thought I would try and explain a bit of my journey!

Thanks for listening 

Anymore feedback most welcome

Good Night

Dean

Hi Dean, I understand why you would opt for the pouch surgery. I agree with Claire that you should very carefully consider it. I would seriously consider whether your body has healed up enough from the trauma it went through when you were sick. Enough to withstand more major surgery in January next year. You were so sick, and I'm so glad your feeling better, but you have to think about what your insides look like, if all that inflammation, scaring, abcesses etc, were all on the outside of your body, what would it look like now, would it all be completely healed up? Your going to be statistically more likely to have complications with infection because you've had Sepsis before (me too) so whatever surgery you go for, give yourself some more time, time to heal, time to reflect, time to get over what you've been through. In the meantime, if I were you, I would try to access your local IAPT services via your GP (access to psychological therapies) and explain that you need some counselling in order to talk about what you've been through, and to be able to ensure that your not jumping into agreeing to more surgery because your hoping it will solve everything. Just speaking with someone outside of your family and friends can be very helpful, and good for some different perspective. There are counsellors that specialise in chronic illness and health trauma. This is just a suggestion from someone who has been through a very similar traumatic chronic illness like you, and who went from being very well to very ill in a short space of time, like you did. You, Claire and I are all in our 30's (I'm now 35) and it's just not fair that we've been through what we have. But once you've had the surgery there's no going back, just make sure your not jumping into it too quickly hoping it will solve all of your problems, because sometimes some healing can come from time off from surgery, and speaking with someone well qualified and 'out of the loop'. If your doctors are telling you that you will have healed up enough, ask for an MRI scan and some blood work to prove that nothing is leaking and that there is not too much internal scarring, strictures etc, that might complicate further surgery. Get them to PROVE what they say to you. I have a stricture that is now very problematic, that was there before surgery and the surgeon knew about it, and still did the pouch surgery. Now a second opinion has revealed that wasn't such a good idea. So what I'm saying is, don't leave the surgeons to consider everything for you, they are not fail safe. I wish you all the very best, keep well and make sure you get all the help you need from the NHS. 

Hi i feel great other than having this bag stuck to me. Ive been lucky not to have lived with the illness too long before having surgery. My insides must be ok because they took all the bad large intestine away. Why would i be more at risk from infection because i had sepsis before? I wasnt informed of this. Im under the impression that if things dont work out with the j pouch then i can go back to how i am now. Why couldnt I? 

What affect would loosing the j pouch have on my body?  I had an epidural when i had surgery but unfortunately it didnt work as when i came round in recovery i was only meant to be there for 2-3hours but was there 12 hours as they couldnt control the pain. I hope that doesnt happen again. 

Maybe i am lucky as i am and im being selfish trying to get more sense of normality by going for a j pouch.  I just feel that if it all works outi would feel more back as i was if that makes sense. 

I dont like to put my family through it all again but if i dont go through with it i will always wonder what if! 

I never thought my life would end up like this as i was 100% fit and healthy before then all of a sudden out of no where struck down with this illness. 

I hope that one day they find a cure and exact cause for crohns and ulcerative colitis. I was hoping the map vaccine was going to be a success before i had my surgery but unfortunately not. 

I was told by my stoma nurse that men have more success than women with the j pouch. Not heard this before but i was told that sometimes men can suffer from erectile disfunction but only a very small percentage. 

Im very grateful for all your feedback even though i probably dont come across as i am. I too am 35 just. The damn 30's looks like its bad for a lot of people!  

Dean

Dean227 posted:

Also why is there no specific uk forums as most i read is from people in the usa. 

Perhaps this is because this site was founded by Bill J, a former j-pouch patient, and now with a k-pouch. He happens to be American. That said, we get members from all over the world. We all have common issues, medically. If we had a separate forum for every country, then there would be a ridiculously long list of forums, and it would make the site difficult to navigate.

You are welcome to start a thread at any time, such as this one, with lcation specifics.

Jan

Dean227 posted:

Also why is there no specific uk forums as most i read is from people in the usa. 

Do j pouchers ever meet up? I would be keen to speak with a group in the same situation as myself or who have taken the route i have chosen to take. 

Hello Dean,

There is a support group in the UK called the Red Lion Group.

www.redliongroup.org/j/index.php

I think they sometimes hold events, informational and social. Maybe they have a Facebook page too?

I'm not a member because I live in Australia but I do occasionally read the group newletter and have had contact with staff at St Mark's as well.

Cheers, Sarah

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