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

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)

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.

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
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

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

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

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.

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!

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...

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!

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.

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....

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.