My Update

hi all

Well i saw my consultant today (my usual Professor was not in today and leaves in 2 weeks) so i was not best pleased.

He wants me to wait another six months (november) as he says people who have this need at least a year before deciding if it works or not.  He does not think my small bowel is slow as it worked fine with the ileo  - apparently the stoma is placed as close to the anastomosis as possible - this surprised me.  I said how come food takes longer to go through now than with the bag??!!  He thinks it could be rectal   That is why a bit more time is required to adjust. mmmmmmmmmmm....He asked about my quality of life now and i said not as good as with the ileo....

BUT if that is true then why did my output with an ileo stink to high heaven   ....so much that i would always have to spray and open the window -  but now it does not!>???? - anyone ?

So he wants to give me a gastric emptying test - i hope this is the right test? i have had enogh of hospital and tests etc.. I know we Brits always moan about the NHS but why do they only do tests when something goes 'wrong''!!??? Everyone on here seem to have EVERY test going (lots i never heard of until recently) and hence they get to sort their lifes out within months and not years like me. 

 

Karen,
I can't remember...have you tried miralax yet? I've tried taking it only once a day and boom.....I'm backed up again and feel horrible until I take another dose. If not miralax, how about prune juice? It makes me go, but miralax is so much better for me. I know it doesn't work for everyone, but worth a try!

Wishing you well!!!

janie

Hey thanks all of you for your support....

Yeah its doing my head in thinking about waiting six more months.....it does seem pointless doesnt it??? like i said - why now - i suppose at least it may give me some peace of mind to 'know' whether food is passing through at the correct speed. I am paranoid that they have damaged my bowel or something..  But what realy annoys me is (like you HOdaya) - why the hell did they not say i had a pelvic problem before i had the reversal - it MUST have showed up on the tests i had two years ago ... didnt think mentinoing that.. i am gonna call tomorrow and ask for my outpatient appt to be brought forward to end august which is three months away and near the anniversary of my reversal. I think, had i insisted, he would have put me on the waiting list for an ileo ... but he said usually it is for ppl who are at their wits' end with it all... may be i have just adjusted but i am not 100% quality of life as before.... yeah i may get better but in my mind i doubt it cause nothing happens without the prune juice - the prucolapride just makes the juice work faster that is all really.  i dont want to keep forcing my body into action for the rest of my life and then wait a few painful hours for it to kick in...

 I wanted to be pain free etc for my 50th birthday this year which is on 10 November - i am gonna be 50!!  

The prof i am sure would not have given me a six month appt cause he was the one talking about putting the ileo back - i will try to get an appt with him but all of london prob want to see him as i wasnt the only disappointed one that day.

i I must remain positive and it really helps to have my friends to speak to on here. 

mirlax kills me with bloating and wind janie but thanks and i am glad you are living life to the full now - you are one of the lucky ones.... along with Amanda - do you remember her - she is connected to some of us via Facebook and she is doing fantastically well but dont really communicate much now...  its great to put a face to a name.

love peace and health to you all. xx

 

Thanks hodaya you are very encouraging - the professor is abdictating from all his duties both NHS and privately in two weeks, as he is being made President of the Royal College of Surgeons and will be travelling around the world teaching etc but continuing research studies in the UK.... so he has had to give up surgery. He would have stayed another couple of years as a surgeon before retiring otherwise.

I have just spoken to his secretary and she has put my appt to 3 months instead with the surgeon taking over his role who has worked with him for many years, so i feel a bit better knowing that. No i wont let them put me off, and by then i will have given it a year (anniversary is 10 sept) and i think that is long enough to know if things will change. x

Karen - glad you got the time cut in 1/2 so you have less time to wait now. Sounds like you will have a very capable surgeon too.

Karen,
So sorry you have to wait, but 3 months is definitely better than 6 months!

Pelvic floor issues are terrible. I know I'm lucky that the miralax works, but I do worry that one day it may stop working. Without it, I am miserable. I can feel the stool in my rectum and can't get it out. Today for example I ate a chicken burrito (which was stupid), and then some ice cream. I didn't take the miralax until later than usual tonight and for about 2 hours I was miserable. My rear end was so sore from the pressure and I kept running to the potty and trying to go....finally did an enema, and then the miralax kicked in. That doesn't happen very often (and I hardly ever eat chicken burritos!) but it just made me realize how unnatural this all is. How can you not have a colon and still not be able to poop???

I also wonder this....why do I get so uncomfortable in my rectum if I don't go for several hours? I know some people on here have said they just go once a day, or once every other day. I am just miserable after about 6 hours or so if I don't go. It's the most horrible rectal pain and discomfort. The miralax makes everything come out pretty liquidy but at least it comes out. I wouldn't care if I only went once a day or once every couple days, but I just can't deal with that. I probably go about 10 times or more a day, usually a few times after each dose of miralax.

Sorry I just make this post about me....I was really just going to tell you how I hope the next 3 weeks go by quickly for you)

Hugs,
Janie

Trigirl,

I see you had rectal cancer...is that what you mean? I never had this issue before I had a colectomy for colon inertia. I could go days without a bm and never was uncomfortable in my rectum. ..just very bloated until I took a laxative and got cleaned out. I think it's just that there is no colon to hold the stool now, so it gets there and I can't get it out!

Did you have a colectomy? How are you doing now?

Janie

Thanks Karen. I used to use prune juice but it didn't work as well as miralax for me. It seemed to make my butt sore! How much prune juice do you have to drink a day? How many times?

A good friend of mine has been constipated her entire life and just went through all testing. I couldn't believe that her colon was fine, and only her rectum the problem. She's starting biofeedback. I tried that, but it didn't work for me.

I'm not crazy about going so often, but it beats feeling miserable. Today I ate peanut filled pretzels, which is a no no. Had to come home and do an enema because my rectum was so uncomfortable. then I drank my miralax and things moved...such a horrible feeling. I'm usually better than this, but sometimes I forget and eat things I know I shouldn't.

Take care!

Janie

Unfortunately ignoring or not correctly diagnosing pelvic floor issues is I guess a world wide phenomenon. I thought it was just here in the states, but I guess it's everywhere. Even with the availabitlity of defecograms and all the technology, seems unreal. We are the real experts. It's so too bad the docs either don't listen or they listen after only a very long time. My story from damages from a surgery that lead me to need an ileo, but in my self-education I learned so much that some people have honest original pathology and dysfunction of the colon AND pelvic floor. So many surgeries could be spared if ALL the test results were taken into account. Then patients with honest pathology of colon AND pelvic floor could just go straight to the ileo and spare the other surgeries and their failures. So too bad. But it is as it is. I think a patient unity will have to come along on a very large scale until docs will listen. One would think THEY would know and share their knowledge with the patient. Maybe docs consider giving someone a bag a failure when instead it ends up being a blessing for so many. Best wishes Karen that these 3 months go by fast. Rosemary