Advice Please

Hi Sue,

Its ghastly isn't it and completly life changing. I was diagnosed just over a year ago and it seems to have got worse. Currently on the loo at least 10 - 15 times during the day and also 3 -5 times during the night and mostly just to pass wind with extras. My meds at the moment are prednisolone, sulfasalazine, lansoprazole, some calcium tablets and non-presrciption charcoal tablets. Its like being the bloody living dead aint it, im soooo fed up with bloody tablets and nothing seems to work. I have to seemy consultant next month and will chat with him on what to do next. You seem to be worse off that me darlin with everything that you have taken and nothing working for you just must be so horrid. Maybe the bag is for you? Rumer has it that once you go for the bag you get your life back but i would like lots of opinions on whether that is true. I do feel for you its absolutely horrid this disease and strange that there is no cure. Please follow me Sue and we can both find out from our fellow sufferers the pros and cons of having the bag fitted.

Terry x

Hi Terry

Thanks for your reply.  Yes it is a pain in the rear (excuse the pun).  I am like you, as I open my bowels between 10-15 times a day and 2 times on a night.  I have the feeling that I want to pass something and that I am 'full' but it usually just wind or blood that I pass.

Unfortunately, I suffered a Pulmonary Embolism in November 2014 and am currently having tests (carried out by Haematology) to see where the clots may have come from. When I spoke with my UC consultant yesterday, I asked him if it is likely that the UC caused this and he said although rare, it could happen.  So for me personally, surgery will also elimate the chances of me having another clot, when I come off warfarin.  I have tried numerous diets and have found eating plain chicken or salmon, with rice or pasta, or the odd jacket potato without the skin, are foods that lessen my symptoms but I have been suffering with a constant flare up, even if I dont eat anything.

My consultant is adverse to surgery but says that because we have now exhausted all our options, I should consider an operation.

As Tony3390 mentions, you can have a j pouch but as my disease started off with proctitis, they will not know till they operate whether I will have a clear bit of rectal stump that could be used to make the pouch.  I have read some blogs where poeple are having the operation for a J Pouch (apparently my colorectal nurse says this op is done in 3 stages) that whilst they are recovering from the first operation, the removal of the colon, they start to get used to their temporary stoma.  Once the next op comes around, which is up to you how long you want to leave it (within reason of course) that some decide that they dont want to put themselves through surgery again and that they have surprised themselves and coped well with the bag and decide to make it permanent.  Like Tony3390 said, once you make that decision, there is no turning back.  My colorectal nurse recommends trying the j pouch as the only thing you are likely to suffer from, if you are unlikely, is pouchitis.  She said you begin to learn to use your 'new bowel' again but will have mishaps along the way.  She said it is best to give it a go as it would be nice, if that is the right word for it, to be able to pass a stool from the backside.  I know that if you go for the colostomy, or if that is the only choice you have, they sew up your backside, which makes me cringe for some unknown reason.  My IBD nurse is arranging for me to speak to someone who has this done so that I can ask them some personal questions.  I don't know why, but I am not that bothered about the bag more about how it will behave and the thought of having to go through airport security and on a plane......will it inflate like a bag of crisps?

So many questions but so little choices....

Suex

Hi Sue

So weird you mention Pulmanary Embolisem! Last week i was called in to hospital after they found a PE in my lung via a CT scan i had done for my COPD. Same as you i am currently taking Warfarin as well as all the other tabs. I will make a point of asking my consultant if they are connected. i never even give it a thought. But you are right, still so many questions and not to many answers or options even! We can only hope for a break through with meds or it looks like its the bag for all of us.

Terry x

hi sue ive just joined, hope things are ok with you, have jutr replied to terry so wont repeat myself to much love, i was ill for 8yrs on n off, in and out the ozzy, n so painfully thin, i was glad to hear the surgeon say we need to opperate and fast or were going to loose this lady, yea its a little daunting at first, but no more than a first date lol, honey ive no regrets and never been so well even before the symptoms crept in, i just get on with life now all i have to remember is not to wear anything to fitted for comfort reasons but other wise theres nothing to fear and the aftercare is just amazing, the suppliers i use are always there on the end of the phone should i need them, theres support groups to join if you wish, BAG FOR LIFE, it may be but i wouldnt be here without mine, lifes gud n im living it. x

Hi DrColenzo

Sorry to hear that you are currently sat in hospital going through all of this.

I hope you get the answers and solution that you want.  Let me know how you get on, if that is okay.

Sue x

Hi Doc

Good luck with your op or what ever it is you decide to do. Please let us all know how you got on it is such a big step to make and very scary on what road to take.

God bless you

Terry

Hi Tony,

Yeah i have tried the diet change but dont matter what i eat i am still on the loo. Maybe like you i should persiver with it and try and be strict with what i eat.

I dont understand the J pouch thing. I thought there was only 2 types of colostomy you could have a Loop colostomy or an End colostomy. The Loop one seems to be reversable but im syill not there yet with going through with it it is a huge decision to make.

Can you advise on what is a J pouch please.

Thanks Terry

Hi, my son has had his j pouch operation to reverse his ileostomy and is doing well. he has a reduced diet for a while then he can introduce certain foods again as his pouch enlarges over time. He had surgery at the excellent John Radcliffe Hospital Oxford.

Hi everyone in this discussion, how are things going?

We are two months along from the reversal and all is good. I was nervous at first that my son would not find it as easy to live with as he expected, I dont want to jinx things but it would  seem to be a text book case. He takes no thickening products or diarrhea meds and is down to average of 4 toilet goes a day. He eats anything he wants with no side affects. The output is loose but is controlled by his muscles.

He is still as active as ever, including going to the gym.

I was worried when I read some comments on line before his op as some were pretty negative about complications and control issues but it would appear that it can work out really well.

I hope you are all doing well.

Thanks for sharing.

Hi Sheila,

That is really good news and like the majority of J-Pouch patients it looks like he will have a normal life and the pouch will last without complication for hopefully the rest of his life.

You are spot on about the naysayers because whilst some people have a torrid time with a J-Pouch, most do not and your rarely hear from them online. Frankly, I think a very small but vocal proportion like the attention it brings them about drama X or drama Y, which is the same for a small proporation of humanity overall. 

I was shouted down by one individual for this view on a US based J-Pouch forum on Facebook, who said she was a specialist, for which one would assume she was a Doctor or a Nurse. It turned out upon investigation that she was a physicians assistant and I was not impressed - the facts, the quantifiable and proven facts through decades of research show positive outcomes from the J-Pouch, complications in only a small portion of cases and pouchitis for around 50% but the majority only have one, maybe two incidences in their lifetime. Pouch failure is rare and usually treated by surgery to fix the problem and removal is only in a few cases.

Yet for some these are ever present, expected and inevitable!!!!! That is plainly untrue and I think we should promote this fact more often.

As for me, I am five months out from my ileostomy surgery and could not be better, I have found it to be easy to use and have no qualms about it - I even went swimming off the coast of Santerini a few weeks ago! I am no longer ill and even though the rectal stump has its moments I am very happy. The J-Pouch will have to wait over a year as I was very ill and actually on my way out so my tissue has to recover from the fairly brutal surgery. Also, they want to make sure I do not have a underlying autoimmune condition which could effect the success of the J-Pouch - the alternative is a straight hook up to the rectal stump, which is perhaps not as good as the pouch.

Onwards and upwards!

So glad to hear from you and that you are doing well. It's only by going through this process that you realise how different life can be. To be disease free is so huge! I am so glad for you that your health has improved so much.

My son waited 13 months for the pouch preparation surgery so that he was fully recovered from the ileostomy and emergency surgery. The final keyhole surgery was 5 months later and almost nothing in terms of what had gone before. He is at JR oxford today actually having his follow up appt.

His scars are fading well and he is confident about exercising his abdominals again.

The main inconvenience was showering, he was frustrated by having output when he wanted to get dried and dressed but he coped and you learn how your body works.

You are right about the negativity! it's like Trip Advisor, the only ones to bother to feed back are the complainers or dramatists.

That's one of the reasons I continue to post on here as I would so have found it useful to have had some tips or ideas a year a go. We need to be realistic about the process as it is tough to go through so many changes but in the end the results can be so much better than living with a horrid disease. We were only told about the likelyhood of removing his colon not the aftermath and actually that it means the end of most of the symptoms! No one mentioned the possibility of a pouch until much later and then it was only a maybe. If only we had known then what we know now! lots of wasted tears. I think a counsellor should be appointed to a newly diagnosed IBD sufferer so that they can look at all the possibilities and learn the facts.

The DVT problem is ongoing and even though improving he may still need a stent in his vein. He is down at Guys in October to get the decision. The hosp is being investigated by the Ombudsman and we are co operating fully as we want changes. They are investigating his perforation and him becoming an emergency. It shouldn't have happened!

We are so pleased at how the pouch formation has gone and massively grateful to the NHS and the experts at JR. When you are there it's just a matter of going through it and staying healthy, it's only afterwards that you absorb the affect it has on your life, and continues to have.

Went to Santorini last year, so pretty but expensive, just back from 11 days in Malta of sun and blue skies! much cheaper, esp the wine!

Take care, Onwards etc

 

Whilst the DVT is bad news, I am really glad he is getting on and looking forward to a better life. Hopefully, the ombudsman will provide closure.

Malta is next April - I went there a lot as a child and what with having a consultant from Malta I have decided to go back. Santorini will be a long term prospect as we are looking at holiday homes there.

Hi there,

Agreed we need closure on the DVT negligence and we will get it, I attended an open meeting last week and watched the Chief Exec wriggle, was v pleasurable.

Do go to the Hypogeum in Malta, World Heritage Site, needs prebooking on line, as numbers are limited, really stunning and unique. My fav is the St John's co cathedral in Valetta, so gothic, has had lots of restoration recently courtesy of the EU but so old and beautiful.

Should be warm enough for swimming then.

Keep up the good work.

 

Hi There, How are things going? Are you still waiting to get well enough to consider a reversal?

Son is still doing v well, healthy as could be, thank goodness. He has had stenting op in London to alleviate his post DVT problems and looking good so far. Time will tell.

Mr Ombudsman spent 14 months deciding avoidable DVT was ok and just bad luck. Given choice between good outcome of j pouch surgery and stenting for his post DVT  and successful ombudsman complaint, I know which ones I'd chose. Still frustrated though and will prob continue to ask questions.

Good luck. Sheila.