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ileoscopy update

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Posted 9/27/2012 9:22 AM (GMT 0)
I had my ileoscopy yesterday.. amazing hospital in London and super lovely Dr. The bowel prep was a bit of a joke.. they sent me instructions and bowel prep for a colonoscopy, and no-one really seemed to know what to suggest. Needless to say, I did 300ml of moviprep the night before and that did the trick.. was completely cleared out and running clear! Think I'll write a prep instruction sheet for them!

That aside the whole thing was fine, bit of lovely sedation and garbled my way through the procedure. They did find a zigzag/kink or twist in the 3-4 inches of bowel behind the stoma which is obviously causing my symptoms. Not sure if that's adhesions or the way the stoma was constructed in the first place. Anyway.. it looks like more surgery beckons. What exactly they do is another matter.

Now waiting to hear back from the Prof and see what they want to do next. Thank god for private insurance!
Posted 9/27/2012 9:25 AM (GMT 0)
Sarah, great to have some cause/effect linked to your situation now .... sorry that the answer is probably more surgery, but that can't be a shock now, and hopefully that can take care of the problem.

Glad the prep worked well and that the experience was positive in many ways.
Posted 9/27/2012 8:29 PM (GMT 0)
I'm glad to read that too. It must be such a relief to finally get the explanation for what you've been going through over the last months.
And you sound so much more chipper!
Posted 9/27/2012 8:33 PM (GMT 0)
sarah.. i had  thought they might find something scoping through the stoma. I'm sorry it took them so long to do that, especially as  it is quite a simple procedure. Though for  me..just the idea grossed me out! But it did give me some answers on a situation I had a few stomas ago. I had my first ileoscope at Cleveland clinic and I think the only "prep" they had me do was not to eat or drink after midnight. I mean seriously... with a ileostomy.. not much is left hanging around for a long time.

Anyways... nothing like knowing what's wrong. That must be  a huge relief. Even though it might mean more surgery, let's just hope they can get  you scheduled quickly.

best wishes.

Posted 9/27/2012 9:43 PM (GMT 0)
Thanks for your replies.. I'm still feeling rubbish and only really doing liquids, soups, shakes etc with the odd cracker or biscuit. but can manage so long as I don't attempt to eat solid food. Having given up even trying, I can stay more stable on ensure plus drinks and other stuff. So tonight I've even been out with my running group that I coach.

Yes ddd45 god knows what was going on with their prep instructions! I mean 'bowel prep'??!? really? either way, it wasn't too bad and I felt remarkably fine. Just glad to know there's an explanation, I'm not going mad nor do I have some hideous small bowel motility issue which will be with me forever.

I don't know if it's adhesions or a problem with the way the stoma was created.. and I don't know what exactly they'll want to do. I don't think it's quite as simple as a revision. They may want to do laparascopic stuff to the adhesions. Who knows... the Prof I see isn't a surgeon, so I'll need to see him first, THEN get referred onto a surgeon in his team.

Still.. it's progress! getting in to see these guys is the hard thing since they're like Santa Claus. If I was doing this on the NHS in this Country and didn't have private insurance I would be waiting months.

Will keep you all posted anyway.. am relieved to have some sort of answer at this stage anyway. Hope everyone well. Hugs x
Posted 9/28/2012 11:20 AM (GMT 0)
Glad they found a reason for your suffering...and there is a solution. Hopefully they'll get you in quickly!
Posted 9/28/2012 9:38 PM (GMT 0)
Sarah

Glad they found the issue. Good luck with the surgery. My second stoma revision turned into a six hour open surgery. The new stoma is perfect in from but does not function well at all no doubt due to all the scar tissue they found behind it and the scar tissue they made in this surgery.

This morning my output was so runny that I got dehydrated first day out of hospital. So I ate some cottage cheese and crackers and am now trying to melt the whole mess down with grape juice. I am truly afraid for my life.

Good luck. Rosemary
Posted 10/3/2012 7:27 PM (GMT 0)
Hi Sarah

I just logged on after 2 weeks!! So sorry to hear you are still battling. At least they know what the problem is now. When do you think you will go for revision / surgery? It seems like you, Rosemary and I all had a stenosis / kink in bowel shortly after the stoma surgery. Not good, but at least it can be fixed.
Holding thumbs that all goes well.

Sorry I didn't get back to you on my other thread, only saw your comments today. I have been quite sick and had to have another op 2 weeks ago, so have been busy recuperating. Feeling better by the day though!! Really happy :-). Today is 6 weeks since ileostomy surgery and 2 weeks since my revision.

Hugs
Lolly
Posted 10/4/2012 6:40 AM (GMT 0)
I've been thinking about you LL and wondering how you were. So sorry things weren't so straightforward for you :-( good to see you're starting to feel a little better. The things we endure ! Fingers crossed for a faster recovery now and hope no more complications for you.

So I finally spoke to the Professor last night - he wanted to review all the reports and speak with colleagues before he made a decision. Apparently I have a very narrowed stoma and 15cm of small bowel behind the stoma is twisted/kinked. It will need a revision of some sort and possibly adhesionlysis. He has referred me to a colleague - one of the top colorectal surgeons in London. Unfortunately I've lost all faith in my previous surgeon :-( He sat in his office absolutely adamant that there was no narrowing, no adhesions and it must be a motility issue.

Not helped by the fact it was obvious on the CT scan I had a few weeks ago, but I was told it was 'clean as a whistle'. When they reviewed it they said they could see the narrowing. SIGH.

So now I'm just chasing around to get an appointment with the new guy and see what they can do and when. Hope to hear better news from Rosemary soon.

Hugs to you too and recover well - keep us posted!
Posted 10/4/2012 10:23 AM (GMT 0)
Sarah, I'm sorry to read about that doctor's incomeptency. We place so much trust in them without having any other choice. I sometimes wonder if I should worry that even after 8-10 coloscopies through the course of having UC, it the diagnosis was incorrect and I will discover now, living with a jouch, that I have C. I remind myself I have no reason to worry because there has been no indication of that, but still.. ugh.

But the important thing is that you have clarity, a clear diagnosis and no more mystery-misery. Moreover, you now know you will get the past care and expertise in the country. Do keep calling hime!
Posted 10/4/2012 10:28 AM (GMT 0)
Thanks B'Dereh - to be fair to the surgeon, the radiologist reported the CT and he never saw it. But still! you'd think someone would question it at some stage. Anyway I have an Appointment with what sounds like an amazing surgeon on Monday! hurrah
Posted 10/5/2012 10:28 AM (GMT 0)
Sarah,

Monday I have a retrograde enema xray to see what is going on behind the new stoma. The doc was able to slide greased little pinky finger in and out of the stoma with ease today, so the issue it seems is not at the stoma itself. I could have had the retrograde gastrograffin enema xray (tomorrow) friday but I have questions. The last one I had when I had the stenosis gave me severe diarrhea and I needed an iv and a special collection bag. It was like the contrast gave me diarrhea and then it just kept coming and coming. The doc said this should not happen this time as there is no stenosis at the stoma level but I wanted to spend friday asking questions as if this does happen I will need to be readmitted to the hospital and put on an iv. As I have collapsed veins will this mean another picc line. Did not want this all on a friday in case all hell broke lose as you know how weekend skeleton crews are in hospitals. Hope I chose right to wait for monday.

I also wanted to wait a few days more for general healing. Those gastrograffin xrays can be brutal they press on your stomach to spread the die. I am only 3 weeks post op and still have wound drainage. How would that all go. So more days on liqud for me!

You know what worked well for me was this thick liquid yogurt called keifer. It made a thick bolous of poo that seemed to go into my bag in time with no issue. Interesting! Good luck with what you need done. Hope if I need anything doine they can do it successfully lapro! I am so not up for more surgery as more surgery begets more surgery! Rosemary
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