New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/27/2011 9:09 AM (GMT -6)   
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 shocked   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 skull   ....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: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR procedure - mucosal prolapse/ODS/diagnosed slow transit constipation
2007: Sigmoid resection (MRI showed twist) - made colonic inertia worse (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal - not going well

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 5/27/2011 3:41 PM (GMT -6)   
oh goodness Karen I'm so sorry this didn't work out the way you wanted. How can you wait another 6 months?!! and after all that soul searching about having the ileo back. You must be feeling very upset and let down. How naughty of the Prof not to be there for you... So if this new guy thinks it's 'rectal' why are you having a gastric emptying test??? sounds pointless. Can you kick up a fuss and demand to see the Prof for a proper consultation? You can demand the ileo back I guess??

I am so so sorry to hear your news and can only imagine how you must be feeling right now. I don't know the answers to your questions... am way less experienced at all this than others (and you!).. all I can say is that I'm thinking of you lots. xxxxx
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011. Currently taking Prucalopride 2mg p/d

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 5/27/2011 7:19 PM (GMT -6)   
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

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/28/2011 12:46 PM (GMT -6)   
another six mons..??? are you able to go that long?

i don't think your small bowel is slow either, but i do think that a pelvic floor dysfunction can delay things a lot. but who knows, maybe he's got a point there and by giving it a bit more chance, things will start working right..? gosh, i'd be so very happy for you if they do :)) yeah, give it all a few more mons.

i think the smell of the output depends mostly on what we eat. if i eat fish or fresh onion.... OMG!! fresh tomatoes, or any fresh veggie are also horrible. so i don't eat them. fresh veggies constipate me anyway. but when i drink my juices, my output is almost odorless.

why a gastric emptying now? what's that has to do with anything? anyway, i don't think i had any tests that you didn't have and you remember how slow things moved for me till i finally had the colectomy. those drs gave me hell. and after the colectomy when things didn't work out, they didn't want to listen much. so i just went and faced that surgeon and told him to do the lieo. so he did. maybe he doesn't care about me, about his patients, but i care about the rest of my life and did what i had to do.

but you, Karen, maybe you do have a chance things will adjust and work right. ive encountered one or two women that after about a year things got significantly better. keep a good spirit hon!! ♥♥♥
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/30/2011 9:34 AM (GMT -6)   
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 mad ... 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!! shocked  
 
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
 
Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR procedure - mucosal prolapse/ODS/diagnosed slow transit constipation
2007: Sigmoid resection (MRI showed twist) - made colonic inertia worse (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal - not going well

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/30/2011 11:02 AM (GMT -6)   
i don't know why they never said anything to you about pelvic floor dysfunction. i don't know why drs don't tell us a lot of things we should know about mad  
 
99% if not 100% of ppl with CI have some degree of PFD, but drs want to give it a chance w/o a stoma anyway, cuz obviously some ppl manage. 
 
i don't think your bowels are damaged. please stop having those bad thoughts.
 
anyway, sounds like to me they are trying to prolong things, thinking things may improve and you may change your mind. i'm starting to remember how many times they've postponed your colectomy... they really discouraged you for a long time before finally taking you in. i worry they may do it again now.. don't let them put you on hold like this this time. insist on seeing the prof. make it very clear to them how determined you are about the ileo.
 
isn't it scary we're getting older lol? can't believe i've just turned 38 couple weeks ago.. 40 is just around the corner......  let us know how things go.

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/31/2011 3:02 AM (GMT -6)   
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: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR/ODS/diagnosed slow transit constipation
2007: Sigmoid resection -MRI showed twist - (made colonic inertia worse but cleared obstruction)
March 2009: Total colectomy/loop ileostomy - quality of life 100%
23 Sept 2010: Ileostomy reversal - not going well - motility/rectal issues being investigated

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/31/2011 2:02 PM (GMT -6)   
i think it's long enough too. i'm sure this new surgeon will be great. hang in there, 3 mons wait is much better than 6.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/31/2011 9:13 PM (GMT -6)   
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.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 6/3/2011 12:19 PM (GMT -6)   
Hi Karen.. am back from holiday and catching up. SO glad you got your appt brought forward. Totally agree the Prof wouldn't have delayed things. The new surgeon perhaps isn't quite up to speed with what you've been through and how you're feeling now. Glad you've pushed to get it brought forward and just hope you can hang in there for another 3 months. Take care hun and keep in touch x
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011. Currently taking Prucalopride 2mg p/d

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 6/3/2011 7:58 PM (GMT -6)   
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
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 6/4/2011 10:28 AM (GMT -6)   
Janie, I had those feels in my rectum for somemany years. I thinkyou shouldkeep an eye on that. That tenderness of area can lead to other problems later and you want to be careful.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 6/4/2011 1:53 PM (GMT -6)   
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

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 6/6/2011 3:38 AM (GMT -6)   
Janie thanks.

That is ok you are entitled to have a whinge about it all like the rest of us! It is probably the stool waiting there in your rectum - i had the same feeling when i realised i was constipated after surgery - the rectum hurts a lot - and esepcially if you cant push it out. I feel i can push it out but it is better when it is liquidy. I also go around 10 - 11 times per day (only with the prune juice) - around 4/5 times a.m. then a few times after 12 noon then again in the evening. i hate going so much especially when out and about. but like you said, if i dont go that much i am in pain - i can have tummy ache anyway even if i do go. I feel i have to push a bit of tissue into my rectum also which is really weird - i had to digitate a lot and use suppositories prior to the sigmoid colectmy in 2007 but now it has come back and i dont know why i feel i have to do it again which is not normal. However if the juice works then i dont feel any pressure in my rectum at all.
Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR/ODS/diagnosed slow transit constipation
2007: Sigmoid resection -MRI showed twist - (made colonic inertia worse but cleared obstruction)
March 2009: Total colectomy/loop ileostomy - quality of life 100%
23 Sept 2010: Ileostomy reversal - not going well - motility/rectal issues being investigated

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 6/6/2011 8:29 PM (GMT -6)   
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

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 6/9/2011 10:14 AM (GMT -6)   
JAnie i drink two glasses a day : morning and then early afternoon after lunch - around 200ml each glass - kicks in faster in the morning though.
Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR/ODS/diagnosed slow transit constipation
2007: Sigmoid resection -MRI showed twist - (made colonic inertia worse but cleared obstruction)
March 2009: Total colectomy/loop ileostomy - quality of life 100%
23 Sept 2010: Ileostomy reversal - not going well - motility/rectal issues being investigated

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/11/2011 6:22 PM (GMT -6)   
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

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 6/12/2011 8:38 AM (GMT -6)   
Thank you rosemary yes i totally agree. x
Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR/ODS/diagnosed slow transit constipation
2007: Sigmoid resection -MRI showed twist - (made colonic inertia worse but cleared obstruction)
March 2009: Total colectomy/loop ileostomy - quality of life 100%
23 Sept 2010: Ileostomy reversal - not going well - motility/rectal issues being investigated
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, June 20, 2018 1:34 PM (GMT -6)
There are a total of 2,973,725 posts in 326,123 threads.
View Active Threads


Who's Online
This forum has 161109 registered members. Please welcome our newest member, HPB22.
469 Guest(s), 14 Registered Member(s) are currently online.  Details
momto2boys, Kent M., Lwill351, Gladioli66, getting by, ntzguy, Uniform Charlie, Alxander, Big Tasty, LJohn23, Busted1, xy123, Tall Allen, HPB22