UNC Tests...feeling upset and confused, need some advice!

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Alibee
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Date Joined Oct 2010
Total Posts : 286
   Posted 1/6/2011 7:52 PM (GMT -6)   
Hi all,
I finally made the trip to UNC for my tests today (xray for sitzmark test, breath test, anorectal manometry)

I got a copy of the x-ray and it looks like there are at least 80-90+ markers left, from what I could see clearly. I took 5 pills over 5 days with 24 markers in each one. I am almost positive they are all still in me though, and on the x ray they were all spread out.

The breath test wasn't hard but it made me nauseous because the drink they make you drink is so sweet and disgusting and they made me drink it all in 5 minutes. I don't know the results of that yet either.

The one test that really has me down is the anorectal manometry. I got through the whole test and I thought it went ok, and then at the end she said she was putting the little catheter in my rectum and inflating it with a tiny bit of air, and told me to go sit on the toilet and try to push it out, and told me I got 3 tries. I couldn't push it out - I'm not sure if it was nerves, the fact that someone was standing there waiting for me to push it out, or if there is just some kind of problem. I really got caught off guard with this part of the test because it has never seemed that I have an issue pushing anything out, because whenever I feel like I have to go, I can go. But stuff never seems to get through my system fast enough. I know this can be a problem with muscles or nerves but could this also be a rectocle or something? I thought for sure I'd be able to push it out.

I was wondering if anyone else has had the anorectal manometry, and been unable to get the tube pushed back out? I am feeling pretty bewildered right now and don't know what to think.

Hope you're all doing well

Post Edited (Alibee) : 1/6/2011 9:34:29 PM (GMT-7)


esoR
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   Posted 1/12/2011 9:47 PM (GMT -6)   
If you can normally push something out, it is likely you were just nervous and who wouldn't be with someone standing there waiting for you to do it.

To detect a rectocele they usually do a defecogram. WIth this, be careful and be sure they opacify the rectum, sigmoid colon, and the small intestine (by having you drink something.) If intestine descends from up above, you need them to be able to tell if it is small intestine or sigmoid colon.

Good luck, Rosemary

honestwoman50
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Date Joined May 2009
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   Posted 1/16/2011 4:50 PM (GMT -6)   
Alibee
 Hey, well ya I think Rosemary is right you were just nervous.  When they do that Defogram test they told me OH thats your problem and you need bio-feed-back.  I told them no, its not coverd by many insurances and I dont think that is my problem.  So went to a different doc that did the Sitz Marker test and all of mine were at the lower right of my colon and never moved.  So due to CI I had my colon removed and reconnected...
So you kind of have to weigh everything that your told and get a second opinion.if your able.  Good luck to you.
 
Leslie....is a long journey with many tests, and still a long journey for me almost one year later....had to have a dialation surgery a month ago due to scar tissue and shrinkage of the re-connected areas.  So have a colonoscopy in a week and a half to see if there is a problem further up and to see if it has shrunk back down...so still a daily battle.

Alibee
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Date Joined Oct 2010
Total Posts : 286
   Posted 1/27/2011 1:08 PM (GMT -6)   
Thanks Rosemary & Leslie...
I am still waiting on my test results. I am calling again today to see what is taking so long. Leslie, good for you for seeking a second opinion. I hope you get more answers soon so you can start to feel even better. I definitely think my test could've been affected by nerves, or by the fact that I hadn't gone to the bathroom in a week and was very uncomfortable already. Whenever I feel the urge to go, I can go...so I am hoping there is not an issue there. I've been trying not to over-analyze anything until I hear from the doctor though.

I have been planning to call every day this week but I get so nervous that I end up just sitting there with the phone in my hand for an hour. I am away at college for my last semester and I think I am just anxious about getting the results and being away from home and getting upset without my mom or someone here to talk to about it.

I am hopeful that I can get some answers soon so I can do what I need to do next. I'll update again when I hear something, thank you both so much for your replies, it means a lot.

Alisha

honestwoman50
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   Posted 1/27/2011 11:33 PM (GMT -6)   
Alisha  Take a deep breath and just try and relax.  For me, if I waited for my doc's to call I would go crazy because they took forever.  So I always called them because it just made my stress,  so much worse waiting, which in turn makes your guts hurt worse and you feel sicker.  So I always wanted to know as soon as possible then I could deal with that.  I know that your alone and your scared and for that I am sorry.  So you just have to do what you feel is right for you.
 
Well went to the doc on Monday and he said my scope looked good no problems further up, but had to dialate me again, so he thinks it should stay that way..so I hope so.
Went to my neurologists today and he put me on another epilepsy/Seizure drug that is state of the art to see if I can tollerate that one.
My PCP put me on 50,000 mg of D a week for 3 months as my count was so so low.  They told me for some reason my body is not getting much neutrition and they don't know where it is all going.  I have lost 3 more lbs in a week, so really have to work on getting my weight up cuz 3 more lbs and my BMI will be below the line..I think I am at 19 BMI right now .  So they want me to eat a lot of fat, but I don't eat fatty foods like rib eye or crud with a bunch of fat in it, it's disgusting to me.   Plus that type of yuck just kills me off. I  have too much problems getting it to move through my intestines and its not worth the grief..
So I am a hot mess but feel good today..and for that I am thankful.
So keep me in the loop and sending many prayers and love your way.
 
Leslie

Alibee
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Date Joined Oct 2010
Total Posts : 286
   Posted 2/8/2011 12:04 PM (GMT -6)   
Long post here...
I had my tests over one month ago and the doctor finally called me back….

Here is what she said:
- My breath test was "normal", so I don't have to do another course of antibiotics

-My sitzmark test was abnormal. She said with the test she does, normal transit time is anything up to 66 hours, and anything past 66 hours is abnormal. She said my transit time was 116 hours.
-She said the tech counted 116 out of the 120 markers I ingested, and said it was likely that the remaining 4 markers were just obstructed from view by bone or something like that.
-So basically I have very slow transit , which is not good news but it is good news to me because now I at least have the proof that my system is as slow as it feels.

Then comes the manometry - she said that parts of it were perfect, and parts of it were "so-so". She said I have great nerve sensation and muscle tone but that the muscles are slightly uncoordinated when it comes to going to the bathroom. I am still confused about this because I haven't really had issues getting anything out

She said it is not a bad case, she said "mild-to-moderate" and that it is fixable through biofeedback…I asked what do I do after the biofeedback in regards to my slow transit, and I asked about long-term options if the slow transit is not improved, because I graduate this spring and I want to be able to live my life and get a job and I can't do any of that if I have to continue with my "routines" which take up most of my life. She said that long-term, if a person is a good candidate and have tried everything else - the surgery they recommend is the subtotal colectomy with ileorectal anastamosis (not sure if I spelled that right)

-She said that in order to be a candidate for surgery a person has to have their pelvic floor issues fixed…so I was really stressed about that because I keep worrying, what if my pelvic floor doesn't improve??

-She said that after the biofeedback and whatever else (any new drugs I may try), then they would check the transit of the stomach and small intestine before doing the surgery on a person.

So basically I have to get the pelvic floor issue resolved, and meet with her again in 2 months to see how it is progressing, and what the next step will be.

I talked to my mom about it and told her about long term options like surgery…which she still seems to be SO against. She says she doesn’t want me going through all of this with surgery in mind because she wants me to hope that it will be fixable without surgery, or that at least I can get to a point where I can "manage" it. I have told her I will do everything they tell me to, and of course try everything else before surgery but I just can't seem to get across to her that I do not want to get to a point where I can "deal" with this…I want to FIX it. I don't want drugs and therapies and tests for the rest of my life. My feeling is that if I get the pelvic floor functioning like it should be, and if I try the new medication that is in the pipline (available in europe just not usa yet…Doc says she is hopeful it will be approved in the US this year)….anyways, if I do all that, and they check my stomach and small bowel motility and it is normal…then I would want to look into surgery.

My mom's rationale is that she says "well it hasn’t been this bad all of your life, only in the last few years did it get this bad…so maybe you just need to change a few things with your routine or take a medicine and it will be better". I understand how she is feeling but I don't think she really understands what colonic inertia, or very slow transit is. She actually told me to try eating apples the other day and I wanted to cry…I can't do fiber and the there is nothing I can eat to speed up my transit, so I have to eat the things that will go through the easiest and produce the least amount of gas (a low-residue, low fiber diet)

I'm still processing all of this and I'm pretty bummed that there is an issue with my pelvic floor, I really didn't want to go to biofeedback because I haven't really heard anything about it and I was hoping for more "action" treatment-wise. I will have to wait until my next appointment with the Dr. which is in 2 months. I graduate in 3 months and I pray that by then I will have more of a plan of action after the biofeedback.

Has anyone had colonic inertia AND any kind of pelvic floor issues, and successfully resolved the pelvic floor issue so they could have surgery? Has anyone tried biofeedback?

honestwoman50
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Date Joined May 2009
Total Posts : 833
   Posted 2/8/2011 12:47 PM (GMT -6)   
Alibee
They told me the same crap, bio=feedback, and the pelvic floor thing too.  Sounds like you colon is not working almost at all with those letf in.  Did they say if the rings were kind of grouped together or spread throughout?  Bio-feedback is expensive and most insurance does not cover it and you have to go like 2 times a week for like 3 months.  Mine would have been 250.00 a visit and a hr and a half away, and insurance would not cover it.  I knew for sure I did not need that stuff, take you sitz marker test to a regular surgon like I did, and he told me nope your colon is not working at all mine were all at the bottom right and never moved.  So get another opinion ok sweetie and keep up posted..blessings..
 
Leslie

elle15
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Date Joined Feb 2011
Total Posts : 1
   Posted 2/17/2011 8:43 PM (GMT -6)   
Hi Alibee,

While searching GI issues online I came across this website and found one of the threads you had posted. I couldn't believe it because I have been experiencing very similar issues to the ones you describe, and it has completely changed my life over the past two years! I am a 24 year old female who started to have issues with constipation my senior year of college (21-22 yrs old). Before this age I had occasional issues but nothing major. Starting my senior year, I slowly started having increasingly bad constipation, to the point now where it is unbearable. It sounds SO much like what you describe, the pain of everything just sitting in your stomach just stuck there and not being able to move. I often go over a week without a BM and am only able to go when I force myself to take very strong laxatives (and sometimes this doesn't even work).

Just like you, I am constantly on laxatives and feel like I've tried almost everything. I have been to multiple GI doctors, and on Monday I am going to take the Sitzmark test (swallowed capsule yesterday). I'm in constant pain and have also been debating whether the surgery would be worth it in the end. There is nobody in my life right now who has ever experienced this type of issue and it gets to be extremely frustrating and lonely. I hardly go out at all anymore an feel like I've completely lost my social life because I have to base everything on whether I've been able to go to the bathroom and how much pain I'm in. It has also effected my job and I'm now only able to work part-time. I sleep every night with a heating pad that provides minimal relief to my discomfort. I'm so sorry to hear about all of the issues and pain you're going through, and truly wish that everything gets resolved for you. It's comforting to know I'm not the only person who has been suffering from this problem but wish there was an easy..or any solution as to how to fix this problem! I would love to hear any updates of how you are doing or if there is anything that you have found that provides relief.

Best of luck to you,

Elle

honestwoman50
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Date Joined May 2009
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   Posted 2/17/2011 9:15 PM (GMT -6)   
Elle,  I wish I could tell you something that would make it easier, maybe eating small meals more often, I could not eat fiber or any fruit or veggies.  You do rule your life on you guts, we have all lost friends over this I think.  Because they don't understan the hell we go through 24/7...  I would like them to walk in my shoes for just a short time and they would not call it a belly ache... Nope it controls your every wakeing hr.  I myself tried to sleep as much as possible to not have to deal with my issues.  It has been one year for me on the 19th of this month, and finally starting to get some energy back, and the last 2 months I have managed to stay out of the hospital cuz I was in the hospital every month and sometimes 2 times a month because of Ilius, or gas loops as I call them.  They dont let anything in or out, and have to have NG tubes....hate those.
 
I feel your pain though as well as others.  So I pray that you find the answers that are right for you and the Sitz Marker Test will tell you a lot.
 
Leslie

honestwoman50
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Date Joined May 2009
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   Posted 2/17/2011 9:26 PM (GMT -6)   
Alisha  Went to see a nutritionist on Monday and she is concerned about my body not asorbing fat.  So she want me to get that test and if my body is not doing that she said that they could help me with that.  I don't know a pill or something.  My insurance denied my sinus surgery so now I have to go back to the ENT doc next week for more tests so we can appeal it.  I think that it is so stupid for them to pay for another  CT scan when I just had one, but will wait and see what the doc says.
My bowels are working great since I am home from Calif...must be the water...down their...LOL
 
Leslie nono

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 2/18/2011 2:32 PM (GMT -6)   
Elle, I could hug you!

I've been in quite a funk lately with all of this, it's hard to deal with doctors appointments, pills, test results, planning future appointments, etc. AND go to school, work, and remain positive. I've pretty much lost my social life because I really don't have the time or energy to do anything. I also have a heating pad on my stomach in the evening and in the morning. I used to sleep with it but mine got too hot and I started getting burn marks on my stomach. Every time my parents see me whip out the heating pad they tell me to get rid of it because I'm probably "cooking my insides"...but it's the only way to relieve the tightness in my belly when it's so bloated.

It sucks being 24 and having to deal with all of this - I'm so glad you found the site and I hope we can help each other out with all of this, whether it's talking about tests or treatments, or just venting and needing to talk during a bad day. It always helps to find other people who can relate, but it's especially great when you can find people the same age as you. I can't believe we're the same age and have almost identical problems. Every time I hear from other people with these problems, I think it must be some kind of disorder or disease, but doctors just don't know what it is or how it happens. I bet in 50 years they'll have a name for it and everything. Howabout, "Sucks the life out of you and makes you look pregnant" disease.

How is your family or friends with all of this? Do you live at home or away? I have been having a really hard time with my family lately because it is so hard for them to understand how I feel, especially since they can't see anything wrong with me on the outside. Every time I try to even bring up the topic of possibly having surgery for this, if I was even a candidate in the future, and had ruled everything else out - it's like my Mom just shuts off her brain and won't discuss it. So I have to research everything on my own. She is always telling me to get myself together emotionally, or to "eat something fun" for dinner. The doctor told me in the meantime, to take laxatives as much as I need, even every day. But then my Mom says I shouldn't because they are bad for me and they make me look sick. I am scheduled to go to Biofeedback to help with my pelvic floor muscle, I'm not sure what is wrong with it but the doctor said the levels were a little off, and if i ever did want surgery I'd have to fix that first anyway. Then sometime in late April or May I have a followup appointment with the doctor to see how I'm doing and what to do next...so I'm having my Mom come with me, I'm hoping that if she hears the words from a doctor's mouth maybe she will understand that "very slow transit" is much worse than just regular, once-in-a-while constipation.

That's great you're doing the sitzmark test. I know how hard it is to even get to the point where you can FIND a doctor who even knows what the test is, let alone give it to you.

I know how it is having to base your entire day off of whether or not you can go to the bathroom. I worry about things months in advance even, like going on "vacation" (never really a vacation for me), or holidays.

I'm sure I have lots of other questions and things for you but I'm about to leave for class so I'll have to check back later. Keep me posted on how you are and how your test is going!

Alisha

Alibee
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Date Joined Oct 2010
Total Posts : 286
   Posted 2/22/2011 12:27 AM (GMT -6)   
Elle, how is your sitzmark test going?

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 3/15/2011 5:19 PM (GMT -6)   
Hi again everyone,
The weeks have dragged by since my tests at unc and my diagnosis of colonic inertia (all markers were still left, and all spread out) and mild pelvic floor dyssynergia. My doctor referred me to a physical therapy center to try some biofeedback and then I am going back to UNC in late April for another appointment with my GI. I decided to go along with everything and try the biofeedback, sort of as a way to keep everyone happy and also as a way to leave no stone unturned. My GI doctor has mentioned surgery to me, particularly on the occasions when I asked about "long-term" options. However, she said that my manometry showed some slight pfd - she said some of the parts of the test were perfect, and some were a little off. I had normal resting pressures, great sensation/nerves etc, but that the muscles were slightly un-coordinated when I beared down. I have never really had much of an issue getting anything out, but I think that since I so rarely have a bowel movement without assistance from laxatives now, the muscles sort of forgot how to work exactly the right way. She said if I walked into her office and said "I'm done just give me the surgery"...that I would have to do some kind of therapy to get the pelvic floor back on track anyways...so I am biting the bullet and doing it.

Anyways, I just had my first biofeedback appointment today. I have mixed feelings about it but I'm going to keep going for the recommended # of sessions (3-4) until my next appointment at UNC. The therapist didn't use the "equipment" today since it was the first appointment, but she did an exam both internal and external and checked out all my muscles and had me push/pull in/etc. She said I am doing everything well but having some trouble relaxing and pushing at the same times, but she said it was very fixable and she has no doubts about that.

The thing that sort of irritated me was the other advice spent about half of the appointment giving me about constipation. Telling me to eat MORE, to eat lots of fiber, exercise, the usual. I totally get how this would help your average joe who is having some constipation issues. but after dealing with this my whole life and trying everything imaginable under the sun...I kept having to bite my tongue. I didn't want to argue with her or seem defensive because I know that would not work out in my favor. She told me to try a mixture of prune juice, apple sauce, and oat bran. That would be like setting off a bomb in my belly! I already eat as much as I can and I know eating several small meals throughout the day is ideal but after all these years I've found that eating as little as possible throughout the day is the only way I can even TRY to function and get done what I need to. I'm in my last semester of college and just trying to keep my head down and focus on finishing. I will of course take her advice and drink even more water and try to exercise more, but as far as eating I feel I know what foods "work" for me right now (as in, make me feel LEAST discomfort...all food makes me uncomfortable though)

I was wondering if anyone else has been to biofeedback and if they also got similar diet advice. My GI understood when I told her fiber makes me feel worse, and advised me in the meantime to take 4 doses of miralax a day and dulcolax when needed. It is not a long-term plan but she said I need to do what I can to keep things moving as much as possible until I see her again. I am wondering if the physical therapist just doesn't know or understand what CI is, and is just taught to do the therapy and give advice for normal, run-of-the mill constipation...which would work for most people but I think when you have CI isn't it better to stick to a low-residue, low fiber diet?

My Mom will be coming with me to my next appointment and she asked me if she could ask the doctor some questions. I said sure, what questions? And she said she wants to ask about diet, like if I ate more or at different times, or if i ate every hour etc...would that "stimulate" my digestion....she doesn't really understand the whole "inertia" thing either. That is something I also struggle with, is trying to explain it to my family. I have brought up surgery but they shut down and don't want to talk about it. My mom has told me I will have to find a way to live with it, and that I can just buy looser clothes and deal with it and "eventually you will poop"...but I told her the other day that, that is not good enough. I don't want to treat the symptoms anymore - I want to fix the problem. I will follow the doctors orders but if I see her again and she thinks I could be a good surgery candidate, I would like to look into it. She said OK, I think partly to end the conversation, and partly because I think (and hope) she is realizing that I am an adult and it needs to me my decision. I told my mom at some point (i'm 24 years old) it has to be MY choice, because it is my body and I only get one life. I don't get to try again a second time. It is easy for her to tell me to deal with it, because her life goes on. I'm the one who has to wake up feeling bad every day, and base every decision on my bowels. It is no way to live and I know you all know where I am coming from here.

I have just been so frustrated, exhausted, sad, and hopeless feeling. It is very hard not knowing what to do and having to wait for the next doctor appointment, feeling like my whole life is hinging on this biofeedback and my next appointment at UNC...I just want to know what my options will be. Right now I am just trying to keep going through the motions so I can graduate. Thanks to anyone who reads this, and please know that coming here and reading all of your stories is very inspiring and helps me get through the days when I feel terrible.

Another UC wife
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Date Joined Jun 2007
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   Posted 3/15/2011 8:13 PM (GMT -6)   
I honestly don't know anything about your type of situation but you certainly have lived with this long enough and unless something different is suggested that you have not tried, then the professionals should listen to you and what works and what doesn't work.  Especially with your trying to finish college and graduate! You certainly know your own body and what you can and cannot do to get through the day/school or whatever.
 
It is really too bad that these type of problems are just not understood fully and most people think you can somehow "deal with it".  My husband was the one suffering but with the help and advice and reading hours of threads on the Ulcerative Colitis HealingWell forum it gave me the insight and extra compassion I needed to better assist him and understand the depth of what he was going through.  It's too bad that more people don't take the time to come here and try to get a better understanding. So many think there are easier fixes like Immodium etc. 
 
This Friday will be 12 weeks for hubby with his permanent ileostomy surgery.  Overall he is doing very well.  There is a definite learning curve and we are not experts by any means and still learning. Currently dealing with a skin irritation issue that we will hopefully resolve soon but even at that -- he is finally out of pain, adjusting to this lifestyle change and able to come and go on his own terms now. 
 
Good Luck and I hope things get better for you real soon.

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 3/16/2011 10:39 AM (GMT -6)   
Hi UC wife,
Thank you so much for your kind words. You are so smart to come on here and poke around for more information - what a great way to learn more about your husbands issue. I graduate in one month and I am going to push as hard as I can for something to be done for me after I graduate. I feel it is perfect timing to get this under control during the summer so that I can get everything together and go out and get a job and be on my own...something I would not be able to do right now, and something I've worked so hard at school for. I plan to print lots of information from these pages to give to my parents to read sometime, hopefully they will soak it in like you did.

One of the best and most important things to have when you struggle with health issues is the support of loves ones, your husband is so very lucky to have such a strong and compassionate person like you to help him through this!

Thanks again for the post, it helped a lot :)

Sending good thoughts to you and your husband!

2b ColonFree
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Date Joined Nov 2008
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   Posted 3/16/2011 12:08 PM (GMT -6)   
Alibee,

the physiotherapists just tell this to every patient with constipation, they know nothing about CI. pay no attention to her advice. i also had biofeedback before my colecotmy and the PT also thought i should work with my diet, exercise etc. they just don't have the slightest clue about CI. so don't let that irritate you. i just kept explaining to her what CI is, but she had hard time understanding it too. don't dare eat fiber, it's disasterous for ppl with CI, well, you know how it feels. cuz when the muscles and nerves are almost dead and not working, all the fiber do is plug the intestine up and can cause an obstruction. fiber is good when the nerves and muscles of the colon are healthy. i had 10 long sessions of biofeedback, but my anismus is so severe that it didn't help me at all. my PT defined my muscles tone as inhuman. it was about 35-40 at rest, when the normal is 1-2.

from what your PT said, it sounds like your pelvic still has a chance the colectomy w/ileo-rectal anastomosis can work for you. no point in waiting any more. the more you wait, the more you risk deterioration of your pelvic. if i had the TC yrs earlier, maybe i could have saved my pelvic from deteriorating as it did. it's obvious that you have CI and with CI ony removing the colon can help, there's no point in waiting any longer.

i understand how you feel, and i know it is so frunstrating when the ppl around you, esp the loves ones don't understand your disease and what you're going through. yes, UC wife was very smart and caring to make the effort and read this site. i think your mum should also read some of the total colectomy threads and get the idea of what you're going through and realize surgery is your answer.

good luck. keep us posted.
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

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 3/16/2011 1:15 PM (GMT -6)   
Thanks Hoodaya,
This made me feel a lot better. She spent close to 30 minutes explaining to me all of these ways to change my diet, told me to eat 6 times a day, and to try stool softeners. For a while I was fighting back tears but I had to keep reminding myself that I was there not to fix the constipation but to get a handle on the pelvic floor thing to make my GI doctor happy. I told her I couldn't tolerate fiber at all and my doctor recommended a low-residue/fiber diet...and she said "Oh...ok well, then lets try drinking more water..."

She sent me home with some stretches and stuff to do and a bunch of pages with lists of foods that have fiber in them...I wanted to tell her I probably know more about those foods than she does! I go back next week and she said she's going to use the biofeedback "machine" next time. Then I'm supposed to go another one or two times before I see my GI doctor in April. I'm still just not sure exactly what the issue is down there, I just know I couldn't push out the balloon they inserted during the manometry, and the therapist said it was because I just wasn't coordinating the muscles correctly. I also think part of it was my head...knowing someone was standing right outside the door waiting for me to push a balloon out of my butt, how could I relax?!

When you were going through all of this, even though you were having pelvic issues, did they try the ileo-rectal anastomosis first? Just to see if it might work for you? I really feel like when anything gets down there and I get the urge I can go, it's just with slow motility nothing ever gets down there in the first place! I know my GI doctor said after biofeedback the next step would be to check the transit time of my stomach/small intestine, which is also stressful but I don't really ever have nausea or heartburn or discomfort in my upper abdomen so I don't think there would be an issue there but I know they have to rule it out anyway.

Also, did you ever have to repeat sitzmark tests, or is one considered enough? I am really hoping I never have to do that again...

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/16/2011 1:59 PM (GMT -6)   
yes they did try the ileo-rectal anastomosis first. unfortunately it didn't work for me and within 2 mons started to have constipation issues and within 6 mons post colectomy i had no bms w/o the aid of lots of laxatives. at some point, no laxatives were helping, so i opted for the ileostomy.

apparrently, my small bowel also has inertia and i still need lots of prune juice to make things going, otherwise, i will hardly have anything come out to the bag. so my slow smalls + anismus - the colectomy w/ ileorectal anastomosis didn't work. but now that at least the rectum is out of the picture and i only have to deal with my small bowel, it's a lot easier, cuz the small intestine doesn't get used to the laxatives as the large one does and you can fool it every time again and again ;)

not being able to expel the baloon is a bit concerning, but there were a lot of women in the total colectomy threads who couldn't either and nonetheless their surgery was still a success. as you said, maybe it was just the stress of feeling uncomfortable someone watches you. in any case, everyone is different and it's hard to predict who's surgery will work and whos won't, so they always try the anatomosis first.

i had the sitz test 6 times. lol well the first one, my dr forgot to mention i musn't use any laxatives/enemas or do anything to stimulate my bowel. so it was for nothing. another time i had a virus that caused me diarreah - very rare with me and how interesting it had to happen just when i had that test. but all the other 4 times showed CI. i had so many b/c i changed so many drs. but i've heard that sometimes drs like to repeat it just to confirm it again. i hope yours doesn't feel a need to do so.

when you tell about your PT, it reminds me so much of the same process i went through and how frustrated, miserable and hlepless i used to feel too back then. i know the whole process is so difficult and seems like forever for you right now. but only 3 more sessions and you're done with PT and then hopefully things will start moving towards the real solution. hang in there. keep us posted.
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

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 3/16/2011 4:24 PM (GMT -6)   
To be honest if I had come across a PT with no idea what they were on about and they kept on about diet and exercise then I would print off pages explaining what CI is and stuff it under her nose and make her read it.

I don't have CI but things like people in medical profession thinking they know everything about everything when they don't really annoys me. Esp when they start dolling out advice that is complete pants!
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/16/2011 4:40 PM (GMT -6)   
you're so right stripey, that's probably the right way to go with ppl like these in the med field.
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

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/16/2011 5:56 PM (GMT -6)   
I had never heard of CI until I was on these lists (I had the opposite problem w/Crohn's colitis and diarrhea), but it sounds awful. It must be so hard having your mom not understanding and nagging you with bad advice. Can you try out stripey's advice on her and get her some info? I hope the doctor can explain to her and get her more on your side. I have gotten a lot of bad advice from relatives in the past (i.e. that I was in the hospital with a flare because I didn't eat chicken) .... but they did come on board w/the surgery because I was so sick and the doctor's made clear it was the only realistic option. Hang in.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 3/16/2011 7:17 PM (GMT -6)   
I agree with bluegrass, can you print off some info for your mum to read. Is there a support website that has info sheets for family and friends. I know the NACC (national assoc of colitis and crohns) in UK does and they are really useful sheets, I've given one to my boss, so would hope something similar for CI. Also gave one to my husband when we first started dating and I got rushed into hospital. I was too ill to explain fully, had told him I had CD and basics but hadn't gone into too much detail but then flared 3 weeks after we met.

I also went through the usual 'helpful' advice from well meaning friends and colleagues and still do when I lose weight. The most annoying one is 'just eat more, need to put some meat on you'. If they actually watched what I ate in a day they would know how stupid that sounds. I eat 4000 calories a day to maintain weight so if I lose I have to eat even more, which when CD is flaring and appetite goes not much fun.

However, I get the last laugh. When all my colleagues are on their crash diets for Xmas parties or summer hols, I'm the one sat there eating the chocs and cakes customers have bought in!
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/17/2011 10:37 AM (GMT -6)   
I flared about two weeks after meeting my partner too..... wasn't one that required hospitalization, fortunately, but I think it was induced by the "good stress." I just felt like it was the most unattractive thing..... but she was not phased, and we kept on getting to know each other..... that was six plus years ago..... guess it worked out for you too, stripey....

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 3/17/2011 6:31 PM (GMT -6)   
oh yes bluegrass. He proposed after 4 months and we married 2 years later and this June we celebrate our 15th wedding anniversary and my 40th birthday on the same day. Thought I'd be kind and only give him one date to remember each year. :)
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/18/2011 8:19 AM (GMT -6)   
Congrats! My relationship has pretty much coincided with my disease getting a lot worse..... but it means that even though I've been really sick, I still look at these last few years as some of the best of my life. Hope you're doing something special for your anniversary.
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