Really worried, id appreciate some thoughts please..

Are you considering surgery ? Have you had surgery ? Trying to cope with colostomy ? Share your experience with others here.
Bobish75
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Really worried, id appreciate some thoughts please..

Post by Bobish75 » Thu May 26, 2016 6:38 pm

Hi guys, would appreciate your thoughts…. Im now 41 and male.. Back in the 90s I had really bad IBS, confirmed some 10 or so years later as ulcerative colitis. I was really bad, 20+ toilet vists a day, week and underweight.

I decided to change everything about my lifestyle, diet, fluid intake, exercise, outlook, doctor gave me prednisone and I healed really quickly. I’ve not had an issue since and consider myself in full remission, BMs on the soft side of normal 1 or 2 times a day. I can eat/drink anything without flares, I only take 4 Asacol a day as a preventative measure.

Of course I get the Colonoscopys regularly, and here is my concern. I have a lump in my hepatic flexure, about 3cm in seize, its been there about 6 years as far as I know , originally they suspect it was a sessile polyp, then an adenoma, and now they kind of admit they don’t know what it is. The biopsies showed dysplasia (abnormal cells) and the panic button was pushed, but then the biopsie results came back saying there was no undue reason for concern, in truth this has happened before at the same location. Consultant sent off for a second opinion and this time they recommended surgery.

In my mind this was a 1 inch bowel resection, unpleasant but no big shakes in the long run. Consultant even said he looked at removing it during the Colonoscopy but was not suitable due to location and size and flatness.

CAT scan completed and came back clear. Met with the surgeon yesterday who has recommended complete colectomy and a stoma, with the possibility of a J Pouch if wanted.

His thought is that Dysplasia is rarely isolated and can be very hard to spot in the bowel, 2 biopsies have shown Dysplasia so they are confident it is there. Obviously im crushed. He also said the risk of developing cancer was high so they want to remove the risk

Does this sound right to you guys? Ive seen people say that colon removal is a last resort, so this sounds a bit extreme. I cant really ask for a second opinion because my consultant has pushed for this and surgeon agrees so that is my second opinion.. To reiterate my bowels feel fine…

Really don’t know what to do for the best. Any thoughts or advice gratefully received.



rogalin47
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Re: Really worried, id appreciate some thoughts please..

Post by rogalin47 » Fri May 27, 2016 12:53 pm

Probably not really what you want me to say Bobish but it's,absolutely the right advice.
A friend of mine had controlled uc for over 40 years with no major problems but a routine colonoscopy showed dysplasia and because she'd had uc for so long her risk of colon cancer was much increased. Total colectomy was advised, and sooner rather than later. She too went down the second opinion route and came away with exactly the same response.....surgery recommended
She underwent a subtotal colectomy with pouch formation and had a loop ileostomy whilst the internal pouch healed and wore an ileostomy bag for three months, she returned to hospital where her remaining rectal stump was removed and the ileo anal pouch activated.
Six years on she is fit and well and most importantly both uc and cancer risk free. She lives a perfectly normal and active life at the age of 68. I would heed your consultants advice.
Good luck with whatever you decide and please feel free to ask any questions you may have. I have a permanent stoma so can only advise from an ileostomy point of view but others on here have pouches and I'm sure someone will be along to help with any pouch concerns you may have. You could also join the ileostomy association forum and pick their brains too, there are some incredibly knowledgeable folk on there who would be only too pleased to.help


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

Bobish75
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Re: Really worried, id appreciate some thoughts please..

Post by Bobish75 » Sat May 28, 2016 7:51 am

Thanks for the reply rogalin, not really what i wanted to hear but kinda what i expected! Just a bit of reassurance that other people have had similar advice really! Been doing a bit of research and so far found the community to be really supportive, but I'm still filled with dread over what seems a major operation and life with a bag or pouch!

I know many pouchers are happy, but sounds like they come from a bad place originally! For the past 10 years I've been able to go anywhere, eat and drink anything and pass gas with confidence (it's the little things lol) not sure i can cope with losing these freedoms again!

Also my understanding is i will still need a colonoscopy (pouchoscopy) so there isn't really a way to sell this to myself (apart from time off work and a reduced risk of cancer) lol.

Also kinda worried that if a j pouch doesn't work they have `waisted` small intestine that could be slowing transit to a bag!

Tough times



Karencraig
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Re: Really worried, id appreciate some thoughts please..

Post by Karencraig » Sat May 28, 2016 10:37 am

J pouch - basically if it doesn't work, you go back to a stoma. Met a lady yesterday who is on her third, and this is her favourite, and best behaved. So don't worry about the function getting worse.

Its a horrible journey to make your mind up to surgery, but its an essential one, and the more prepared you are the easier the transition will be. Appreciate you have had a normal life until now, but life can still be normal after surgery. After work last night I was on the dance floor til midnight, chips on the way home, and feeling lack of sleep this morning! The only difference is you empty your bowels in a different way. And that's the preparation you have to make to be emotionally ready. I DEFINATELY did not want surgery. Now I'm an out and proud ostomist. I'm not suitable for a reversal, and don't want one.

You can ask for a second opinion from another surgeon/consultant. You've been referred to a surgeon, That doesn't stop you asking further, and if it helps you make a decision, and even get a differnent view, go for it. Ask for one.

Agree with Rogalin there are loads of helpful people on the Ileostomy association. I also found it really useful speaking to the surgeon's colorectal nurse. I went in for my first appointment, with my husband, both convinced "the bag" was the end of life as we knew it. An hour later came out wondering what all the fuss was about. A down to earth professional who could also answer questions clearly and practically.

Ask as many questions as you need, vent and stamp your foot as much as you need, there is no such thing as a daft or silly question.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

Bobish75
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Re: Really worried, id appreciate some thoughts please..

Post by Bobish75 » Sat May 28, 2016 7:25 pm

Cheers for your thoughts Karen, sorry im still getting used to the terminology and my thoughts are all over the place, not being rude but ive numbered my queries for my own benefit, they are quite random but any thoughts appreciated..

1) Assume your a J poucher then? Do you mind if I ask why your not suitable for reversal? (I assume that means your not suitable to go back to a ostomy bag from a Pouch?).. this site should probably have profiles so you don't heave to repeat everything over and over lol.

2) Can I just clarify that stoma / ostomy bag are the same thing (stoma the pipe)?

3) When you say you open your bowels a different way? I assumed it was the same, perhaps with less control. Ive heard you should have urgency if the pouch functions correctly.

4) I think ive read that with UC the rectum must be removed too, as a result you have less feeling, do you know if that's correct?

5) Are there any other questions I should probably ask the surgeon? are there different versions of the J pouch? (I know there are K S and W pouches too).

6) If I wanted to go from J pouch to ostomy again would they do it at request? Or would they only do it if they felt the pouch wasn't working (UK NHS im referring too).

Regarding the second opinion, ... ive read a number web pages that say its not uncommon for a doctor to recommend colectomy if dysplasia is found, in the US it seem they do it electively before that, so I don't think any surgeon/doctor is going to contradict the advice ive been given. The only thing im unsure of is if its high grade or low grade dysplasia, but again im not sure it makes a difference to the advice unfortunately, I will defiantly ask around this though.

I think J pouch is the way to go, they either work well or not it seems, im hoping as my diet is sorted and UC under control, I will get a good pouch fairly early on, I assume it harder for people with very active colitis to get the pouch working well from the start..

Many thanks for your thoughts



Karencraig
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Re: Really worried, id appreciate some thoughts please..

Post by Karencraig » Sat May 28, 2016 8:53 pm

you aren't being rude at all, you are being really organised. Hope my replies reflect the same! :D

1) no reversal, is when you have your stoma reversed back to the rectum, sometimes with a j pouch . I'm not suitable for that. I'm an ostomist (ostomy is another word for stoma)

2) stoma is the part of the bowel which protrudes from your abdomen. You wear a bag over the stoma to hold the waste, or as most of us refer to it, output. You will have a stoma. Depending on which part of the bowel is removed you will have a colostomy or ileostomy.

3 My referring to the bowel emptying was between a stoma and a rectum. You are right, with a j pouch the action is the same, just the output is more fluid than normal, as the part of the bowel which removed the water from the waste is removed.

4) The rectal stump is removed IF it is too diseased for a reversal. My surgeons view is 5 years is a decent time to leave it if its not removed in the initial op.

5) all the questions you are asking us. What his views on reversal are, anything else you think of. You might also want to check if you will be having an ileostomy or colostomy, as they are different types of stomas, depending on which part of the bowel is removed, and both work differently.

6) I was told if I went for a j pouch but it wasn't right for me, I could have it reversed back to a stoma. But that would then be final. A great question for your surgeon.

Second opinion. If you feel you want one, to help you make a decision, then ask. Anything which makes your final choice easier is a good thing to do. If you are happy with your surgeons information, then fine, just keep asking the questions as you prepare for the op.

I think a j pouch is a very individual thing. It depends on the emotional view, and also the condition of the rectal stump. I did initially want a j pouch, but the more I heard, after I'd had my surgery, I decided the best option for me is to stay with my stoma, Marvin. Also had a sigmoidoscopy to check the stump last week, and although I have NO problems with the rectal stump it is still inflamed. So for me, I'd still need treatment to contain if I had j pouch.

Yes there are different types of pouches. your surgeon would advice. I think j pouch is the usual. Basically in colitis the reservoir is removed from the rectal stump, and the j pouch replaces it. In my case I'm Chrons Colitis, so can keep the reservoir (don't really get why, but its how the bowel works after connection) so wouldn't need a j pouch, would just have the end of the stoma reconnected to the rectal stump.

you may also want to post on the ileostomy association forum, as there will be loads of people with different reasons for a stoma, and different experiences.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

Bobish75
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Re: Really worried, id appreciate some thoughts please..

Post by Bobish75 » Sun May 29, 2016 11:35 am

Thanks again Karen.. Informative and helped to ease my mind (slightly). May not be the last you've heard from me im afraid...but think I need a few days not thinking about this too much, getting out in the sun, eating and drinking rum (3 of my favourite passtimes :-)

Many thanks



Karencraig
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Re: Really worried, id appreciate some thoughts please..

Post by Karencraig » Sun May 29, 2016 12:29 pm

I spent months on this forum asking questions. Ask away. But good plan for the next few days. Enjoy. :D


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

OrsenTrapp
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Re: Really worried, id appreciate some thoughts please..

Post by OrsenTrapp » Sat Jul 30, 2016 2:17 pm

I reckon it's much harder to make the decision when the colon's working fine than when it's in a really bad way. On the other hand, if I'd had the recommended emergency surgery when my crohn's got life-threatening back in March, I'd probably still be in a bad way as they said my recovery would be 'tricky'. Instead, gallons of steroids, antibiotics and infliximab later, I've had a lovely spring and summer, felt better than I have in years, and managed a family sailing holiday for the first time in 3 years, albeit up to my eyeballs on pred yet again! My local consultant wants to save my colon and I have to say it's behaving well, apart from recent flare which was quickly knocked on the head. Definitely much harder to make the decision now that it's being reasonable with me and frankly a bag would have been a problem on the sailing holiday. Had a bit of a sobering moment as I attached my money bag to my belt and tucked it in (no handbags when sailing!), thinking 'that's where the bag would be'. So, I'll do it when there's no other choice - if I don't get into remission (currently exactly 3 years of the really serious stuff so far), if a flare goes completely out of control, or if it goes cancerous. I'm settled in my mind about having a bag and would insist they took the rectum out at the same time. However, with my unusual form of Crohn's, my immune system would carry on attacking what was left, however much or little, and not just guts. The trouble with surgeons, as someone said, is that removing stuff is what they do so they're not likely to recommend the status quo! :shock:


Not 'suffering', just living with something I now know I've had a long time - and trying to maintain my sense of humour :D
UC upgraded to severe crohn's with 'small print', ie rare, complications.

Karencraig
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Re: Really worried, id appreciate some thoughts please..

Post by Karencraig » Sat Jul 30, 2016 4:55 pm

The only thing I don't do with a bag is camping at weekend music festivals - wouldn't fancy the trip over to portaloos in the middle of the night. But there again, didn't do it pre-bag.
Hope you are both doing well Orsen and Bobish.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

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