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Colon inertia part 2

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Posted 7/4/2011 7:52 PM (GMT 0)
Kyle have all the testing the article Physicological Testing of the Colon, Rectum, and ANus mentions, THEN get your tests looked at by multiple radiloogists and/or even have the tests repeated at a different hospital. Testing is only as accurate as the person reading the tests. Trust me I know. A misread of a test triggered my whole case. Rosemary
Posted 7/4/2011 10:56 PM (GMT 0)
cool  Hi y'all!  Once again, will be away for a few days from computer (except for the chance at the library).  I can't complain though (at least about the reason for the no net).  I am not looking forward to the drive with hellacious traffic and heat and an uncomfortable tummy.  I won't get into details because we are trying to get out the door.  I feel the need to take something more than the mom or miralax.  I don't really want to take the correctol or anything else - I wouldn't even know how much but I am taking some on my trip because I'm getting so backed up. 

Kyle - I know you have to make the choice but weigh all of the options first.  I'm not ready and more willing to suffer than I am to have the ileo.  My husband agrees too - he knows it is something he'd have to deal with and that's not something I'm ready for either.  I hope you and I can figure out works for us best and SOON!!! 

I know for sure that when I push to go I have to press on my abdomen and try really hard but I can tell I am not using the other muscles properly.  Ali, how did your biofeedback help you?

more another day!

 

Posted 7/4/2011 11:28 PM (GMT 0)
Hi Nanci - I'm not sure exactly how much it helped me because as I am sure you know, it doesn't matter how well the "outlet" works if nothing ever gets there...but it did help. They hook you up to machines so you can really see when you are relaxing certain muscles and pushing with other ones. It is hard to explain but before, when I thought I was pushing I was really just squeezing instead. Like you though, I do have to make sure I am using my abdomen muscles. It is very difficult for your body to re-learn how to have a normal bowel movement when you haven't been regular for so long. I envy people who don't even have to think about it, that's for sure!

Hope everyone has a wonderful evening!
xoxo
Ali
Posted 7/5/2011 1:07 PM (GMT 0)
Good morning everyone,

Don't have too much to say, just getting ready for my appt. tomorrow.  Brining in that article Rosemary recommended and getting questions together.  Looking back at my journal to see what I have been doing.  Nanci, yeah, I mean I want to weigh out all the options first, but I am just not sure either because I just feel myself getting weaker and weaker.  I really don't feel like doing that much anymore.  Yesterday, I didn't feel good all day, and I know I should be walking, but I was just sooo depressed, and my day started out wrong just by eating a bowel of cereal!  Also, I kept on getting these spasms down in my bottom, something trying to push forward, but couldn't.  Only letting out gas here and there.  I am not sure, we will just see what he says tomorrow, and I hope I can really start moving forward quickly.  My last hospital he made me sorted mad because he said he was going to do a scope on me, run some tests, and he didn't!  I just got laxatives that I could have done here at home.  Gurrrr!  I am going to mention that tomorrow; if you want to put me back in the hospital, excuse my language, you better run some darn tests or do something!  Anywho, I do got to try and do a couple things today!  ttyl everyone.

Hodaya, I do find the enemas work best when I do them first thing in the morning before I do anything else.  Did that this morning, and stayed in the bathroom for a little while.  However, I feel like those enemas are starting to hurt my belly a little bit. Like I still have this dull ache instead my belly.  It is weird.  I am tired of this!

Posted 7/5/2011 7:46 PM (GMT 0)
Kyle-good luck tomorrow! I hope they can help. I too have that trapped gas. OMG it is intense and can take hours to get it out but usually with some walking I can get some out. I don't know if that is normal or not. When did you guys get your appetite back? I don't go much when I go but I'm not eating much either.
Posted 7/5/2011 9:04 PM (GMT 0)
good luck tomorrow, Kyle! i bet you're anxious to get some answers and i hope you do! thinking of you. can't wait to hear what he has to say.
Posted 7/6/2011 4:22 PM (GMT 0)
Ahhhrg! I still have not heard anything from my doctor or the surgeon's office at Duke that she referred me to for my second opinion. I don't know if this is unusual, or if they usually just take FOREVER to do things like this. I know they don't need new patients because they are always going to have patients, so there isn't a rush...but jeeze. I am feeling worse every day and I just want someone to help me so I can do something about it!

I just emailed my doctor's assistant again. I don't like feeling annoying but hey, the squeaky wheel gets the grease right?

Good luck today Kyle!

Mary - I read your other post about your pain, how are you feeling now?
Posted 7/6/2011 5:41 PM (GMT 0)
Well I was right, I guess I just needed to be more annoying!

I just got a phone call saying that I have an appointment with the surgeon on August 5th. She said I would be getting the paperwork in the mail. They said to do all the usual things (bring insurance card, list of medications, etc) but the only weird thing was that she said they told her, to tell me, that 2 hours before the appointment I need to do 2 fleet enemas. When I asked why, she said it was just their standard request or something like that. I am having trouble understanding why that would be necessary? I know some tests require that as a prep, but in ALL of my tests at UNC, even the manometry and stuff, I never had to do any enemas....so why would I need to do 2 of them before a consultation appointment?!

Now, if they were planning on doing any other tests on me at Duke, wouldn't they have to tell me ahead of time and schedule those separately from this appointment? I really don't want to do any repeat tests, my tests are all SO recent, I was hoping this would just be a general consultation appointment where she could give me her opinion. Maybe they just like you to be cleaned out so they can do a rectal exam? This is confusing...
Posted 7/6/2011 5:52 PM (GMT 0)
Alibee,

Just email back and ask why the enema's for a consult. Good luck, Rosemary
Posted 7/6/2011 11:20 PM (GMT 0)
That is great news Alibee, but I am not sure why you would need to do one for a consult!
Kyle-what did you find out?
Posted 7/7/2011 2:19 AM (GMT 0)
Hi everyone,

Gosh, I am exhausted.  That is the most I have done for awhile!  I wish my surgeon was not soo far away, 3 hours.  I am back home tonight, and after this, I am going to bed!  I think it helped that I have been trying to keep a journal of my symptoms and the laxatives I have been taking to report to the surgeon.  I gave it to the nurse first thing, so the doctor got to look at my report before he walked into the room. 

Right now, the plan is to repeat tests!  This Friday I am having a upper gi series done again with gastrograffin (that is good because I know gastragraffin goes right through you compared to barium).  This is to check my small bowel is still working okay.  Also, he said this might be useful, since I compare that if I eat a wrong food, or sometimes, I feel that gas is just caught in me (burpiness, nausea) until I can pass gas downwards.  Then, on July 15th, I am having a repeat defogram.  Finally, on July 18th, I will have my anal manometry test (never had done before-done in the clinic), and follow-up with the doctor right after the test.  The nurse told me she really thinks the anal manometry will show a lot-thinking I have paradoxical contractions. 

I just know I am tired of having problems going to bathroom, worrying about what I am going to eat, and whether I am going to feel bloated or not.  Tonight, I did pretty good with supper because I hadn't hardly ate anything all day, then since I ate early; I had a little snack.  However, I didn't feel good after.  I did start to let out some smelly gas here and there, but now my tummy is rumbling like crazy, and I feel sorted bloated.  It is just so frustrating to keep on feeling all these symptoms again and having problems. 

After all these tests, the plan is prob. to start biofeedback.  Maybe it will do something for me; I guess we can only hope.  The doctor did tell me today that he has seen great success in biofeedback in his office, so we will see.  I did think it is funny how it seems I am always the one person to have complications because they said when they do surgery on patients like me; they are going and going; feeling great; not back to have problems releasing gas and stool!  Frustrating!

Went ahead and asked questions about the ileostomy today, too.  The doctor understand my point, but we do need to check things, and try the biofeedback.  Plus, he said he still doesn't feel comfortable with performing another surgery so soon after my 2 surgeries back to back in a week.  Like I said, he has never had a case where somebody keeps on running into problems!  However, I do feel by the end of the summer, if I don't at least make some progress, an ileostomy is not out of the question. 

Ali-glad you got your appt., but yes, that is weird about the fleet enemas! 

Posted 7/7/2011 12:13 PM (GMT 0)
Ali, glad you finally heard back from them. the enema thing is weird. do send an email asking why.

Kyle, sounds like your surgeon is seriously and thoroughly looking into your case and that's really good. i hope biofeedback helps you!!!! that would be awesome!
Posted 7/8/2011 3:39 AM (GMT 0)
Hi all,

Just posted to Lizzie on Facebook. She says she is back in the hospital. She misses everyone on here and sends her love. Prayers for her yet again. Rosemary P.S. There has to be a cure for post op adhesions. There just has to be. I've done a TON of research, I admit a bit self-serving on my part in case I ever reobstruct, but nonetheless would benefit soooo many people. With post op small bowel obstructions so common, there is very little progress being made in this field. So frustrating. It's almost like an "orphan disease" yet is so common. A few docs are pioneering some studies but nothing world wide. The Adhesion Related Disorders web site says how hard this is being worked on and acknowledges it, but I have not been able to find much in the way of progress. If anyone knows of anything being invented or created, please post.

Rosemary
Posted 7/10/2011 1:50 PM (GMT 0)
Awww, poor Lizzie, I just feel for here!  It must be awful!!! 

Everyone, that gastrograffin I had to drink on Friday morning was awful!  I couldn't finish it all, but I got enough down to do the test.  The rest of the day I felt very dehydrated, and I was trying to drink water, gatorade, anything like crazy!  Question: should I be concerned that I still struggle peeing?  All the liquid I drank Friday, it was like okay, pee, but I didnt?

Some days have been better than others, but I am still struggling.  The other day, I decided to walk around for awhile b/c I do notice in the morning that if I do that, I can get something out.  I was about ready to go standing up, and I was in the bathroom, next to the stool, and then I was able to go.  However, this morning, no luck, I had to use an enema (really need to try some other things though again b/c I hate the feeling all morning of still trying to pass gass here and there and after effects of enema).  Also, yesterday afternoon, I felt awful!  I got bloated and my stomach just sounded like a water cooler, sooo active, but nothing could come out!  Nanci, I remember you said one time, than you could see your intestines moving, bubbling; well, I was the same!  I laid on the couch for a couple hours until finally, I could pass some gas off and on.  I was getting spasms down at the bottom, and I just felt like crying again.  Friday night, I had the same water cooler noises after my test, and felt awful, too.  I am tired of still needing assistance half the time to go to the bathroom, and all the trapped gas/nausea/burpiness to stop.  I have been doing good about the burpiness, but I have been trying very, very hard to watch to what I eat!  The surgeon still doesn't get why I am experiencing all these symptoms because he feels I should be able to pass my gas and stool sooooo easily, and I remember from the get go, he said you will going several times a day for awhile, but I have never experienced that!  I really can't wait for that anal manometry test on July 18th to see what it says!  Also, Mary and Ali, I was wondering if I should ask my surgeon about the gastric empyting test (I remember you two had it!), since I get sick sometimes, just too make sure I don't have stomach problems, too.  I told my friend last night, I really hope to make some type of progress by the end of the summer b/c I really want to start working again, at least part time, because I need money. 

Hope everyone else is doing okay, and I love ya all! 

Post Edited (hurtboy) : 7/10/2011 8:47:06 AM (GMT-6)

Posted 7/10/2011 7:06 PM (GMT 0)
Kyle, i thought you had the gastric emptying test..?? didn't you? maybe my memory is not so good. isnt mom or prune juice helping you? i'm so sorry you're still struggling. is the issue with peeing was only after the gastrografin test? or is it usually like that?? hope today is a better day for you.
Posted 7/10/2011 7:07 PM (GMT 0)
Rosemary, if you talk to Lizzie again, send her my love. i was trying to text her one day, but didn't get any response. she's in my prayers.
Posted 7/11/2011 1:13 AM (GMT 0)
OK will do Hodaya. Kyle good luck. I cannot understand why you aren't peeing. auuugh! Rosemary
Posted 7/15/2011 3:05 PM (GMT 0)
Hope everyone is doing well!  I found out the answer for my peeing problems.  Wed. night I started running a fever, had crampy abdominal pains.  The next morning, it was continuing.  Everyone got concerned about me; thinking; oh gosh; he has had surgery; is he running into more problems?  I went to the er, and it turns out I have a uti.  I don't feel good at all.  My lower tummy has been sooo swollen, and it hurts. 

I called the surgeon's office today because I was suppose to repeat my defogram today, but she rescheduled it for Tuesday.  I didn't want to make a 3 hour trip today!  Still have anal manometry test on Monday.  Then, see the doctor on Thursday.  I just needed to rest today! 

I told the nurse I had a couple times where I have had luck in letting out stool; only occurs in the morning.  Last night, I had some stool to let out; I was leaking in bed, got up, and produced hard rabbit terds!  I think it is like I just have to wait until there is such a force there for me to do anything.  Enemas are starting to hurt my system, and sometimes all I do is let out liquid out, and then spend what seems like all day then getting out the stool.  I tried mom a couple times, got some results. 

Of course, lately, I haven't been eating very much either.  I would like to eat without my tummy getting so rumbling and mad when I try to eat a normal meal.  I just feel like I am getting weaker!  I really have to watch what I eat or drink.  I just continue to burp, burp, burp, and burp!!!!!!!!!!  Nausea!  I have had the worse gas pains ever since this surgery; can't get that gas out downwards!  Example, last Saturday; I had apple juice, my tummy was bloated, and took forever till I was able to pass some gas.  Again, like a door, it opens and closes.  Monday, I decided to try some coke.  Oh god, I felt awful the rest of the afternoon and evening.  The doctor's office just doesn't get it why all this is happening.  Now, the uti!  Just wish me luck everyone at my appt.'s next week and at the my doctor's appt.  Not sure what they will find or not!  I just really know we need to get on the ball of things!

Mary-I am soooo happy for you!  I am glad that you have been doing sooo great!  Like on fb, last night, mentioning a drink.  I love wine, and I have been staying away from things like.  I will just get upset.  Your only 2 weeks post-op and recovering quite nicely.  Good for you!!! =)

Posted 7/15/2011 4:30 PM (GMT 0)
good luck next week, Kyle! thinking of you a lot. so sorry for the uti. have you told your surgoen about the leaking? the leaking is mostly mucous, not real stools and the fact that it leaks is not good. try eating icecream to gain some calories. hopefully next week things will start to progress for you. hang in. love and hugs ♥♥♥
Posted 7/15/2011 10:55 PM (GMT 0)
hurt,

I feel for you. Best wishes for speedy recovery from the uti then on to testing. Rosemary
Posted 7/22/2011 1:46 PM (GMT 0)
Hey everyone,

It has been awhile.  Things are getting a little bit better.  I have been having some luck going to the bathroom on my own in the morning.  That is progress.  I have been trying to focus on relaxing and thinking about bowel movements.  I did have my defogram and anal manometry test this past week.  The defogram came back normal again, but the anal manometry did reveal some interesting results.  My anal sphincter muscles are weak, which is probably why I was complaining that either 1) I couldn't go or 2) my bowel movements were imcomplete, and 3) the leaking-Hodaya, yes, it prob. is mucous!  The pressure was def. low, and I have paradoxical contractions.  The doctor said to give it a couple more weeks, and call his office, report, and then we will see about doing the biofeedback.  I have been taking mom off and on, and that has def. been helping relieve me; makes it easier.  I thought about taking some magnesium supplements b/c I know magnesium helps, and in the past; of course, with my colon, it did not help! 

One thing that is still bothering me is the gas and bloating as the day progresses (I think I still have a problem letting out my gas!), or if I eat a wrong food.  Better to still stick with small meals to get through my day.  Also, I am trying to stay away from certain drinks too often; I can prob. tell all these surgeries this year has def. shrunk my stomach.  I think I may be one of the those people that need a good while to recover. 

Does anyone know if a probiotic helps?  I tried to do some research about it, since I don't have a colon anymore.  I think it said lactobacillus exists in the small intestine, so I did take one pill last night before bed.  As for the belching and nausea, I have been trying to keep cleaned out and watch what I eat.  The doctor did prescribe reglan for a little while to see if that helps; get a little motility in my stomach.  As for the uti, I finish my antiobiotic today.  I really think all those catheters I have had this year contributed to that. 

Been reading on here how people have been getting depressed lately!  I know that has been a big contributing factor with me, too.  My body has been through sooo much this year; I am weak, and I lost my job this year!  I would like to work and at least have something more to do, but I just know my body still can't handle it.  I am still weak and recovering, and not fully back.  I am still trying to adjust to everything.  I know I have cried numerous times!  I have been looking for prn or part-time jobs just to have a little something to do, but not over-exert myself.  Can anyone else relate to the depression?  Is it just the fact that our body has been through sooo much?  I have almost thought about looking for a shrink to talk to, or taking anti-depressants.  I know people can tell it in my face, and I tend to isolate when I am depressed.  I want to be alone, curled up in a ball. 

Well, I just hope things continue to improve, and the doctor said, give it week to week, and I keep trying to tell myself now; I have been through 3 abdominal surgeries this year!!!!!!  Also, I know some people say on here it still takes them a good 6 months to a year to feel completely normal again!  Keep praying, and I hope everyone else is hanging in there!

Posted 7/22/2011 3:30 PM (GMT 0)
so glad to hear from you Kyle! i'm so glad you feel things are improving YAY :) as long as mom helps you, stick with it. yeah, give it some more time, things can work out. as i understand, according to the manometry, you have both anismus (paradoxical contractions) and weak sphincters, but do give it time, there are many who have some dgree of these same problems, but can still manage with the help of laxatives and a right diet.

you've definitely been through A LOT and you need time to heal and examine things. give your body time to adjust. things still can improve a lot. you can give probiotics a try, it can never hurt. and after all you still do have some colon - the rectum is after all part of the colon.

i know what you mean about the depression. going through all we've been thru can really affect us emotionally and it's normal! i've also quit my job after the ileo op - all these changes and lack of income... it's hard. trying to keep busy with volunteering and spending more time with family and friends. actually it's been a good opportunity to spend quality time with family and friends :)

i'm scared of taking any meds, but talking to someone is a great idea! i recommend you do that. i went for some sessions and it helped me. it can help you a lot too.

all in all, i can tell you, it's been a long process for me too. i'm 2 yrs post colectomy and 1 yr post ileo op and i feel i still havn't been completely back yet, but i've made a huge progress, both physically and emotionally! i'm ready to start new, with a new job, maybe going to school soon, start a new life. you'll get there too! be patient and keep your faith and stay positive! my thoughts are always with you guys!
Posted 7/22/2011 5:25 PM (GMT 0)
Kyle, I'm so glad to hear an update from you. You ARE making progress...so don't worry too much and don't push yourself. You are right, you have had major surgeries and you may be one of those people who just takes a while longer to recover, but I have the feeling you'll keep making progress and feeling better and better. I can relate, I have definitely been feeling my share of depression and I haven't even had the surgery! I definitely am one of those people who isolates themselves too, when they are feeling bad. I am going for my second opinion with another surgeon August 5th. I pray she agrees with the first surgeon so that I can finally make my decision.

Hodaya - You have been such a great support to all of us here, I am thrilled to read that you are thinking of getting a new job or going to school, that would be awesome! Be sure to keep us posted on yourself and how you are doing, too.

I am hanging in there, so ready to make a decision though. The last several times I took dulcolax it didn't work which always freaks me out, and I'm definitely coming to the end of my rope with this. My mom has been much more understanding lately, which has helped tremendously. I told her I was worried about my doctor's appointment and she said the same thing that you said Hodaya, that she doesn't think the surgeon would have agreed to see me after reviewing my records, and set up this appointment to have me come out there, if she was just going to say "no you shouldn't have surgery."

I just hope she doesn't want me to do any of the tests over again, that would be torture.

I don't want to jump the gun here, but I've been thinking about this for a while: when you guys did decide to have your surgeries, how did you decide WHEN to have it? My family has a couple of trips planned for october/november to visit my little brother who will be completing his last year at Notre Dame. Then of course there is Thanksgiving and Christmas...if I do have the surgery I don't want to be a burden on anyone during these times, and I want to be a part of everything too. I also do NOT want to wait until after the Holidays because I SWORE to myself I would not put myself through another Christmas feeling the way I do now.

So basically, about how long does it take to feel like you could go on a weekend trip, or enjoy a family gathering...those types of things? I know it's different for everyone but I was just wondering. I see on Mary's facebook page that she is doing really great now, and she just recently had her surgery!
Posted 7/23/2011 1:22 AM (GMT 0)
Our daughter is 16 and has been diagnosed with CI since she was 5. She had a cecostomy (Chait tube) for 2 years and then the stoma repeatedly became infected so they removed it. She is in Ohio this week undergoing motility testing. We wrapped up testing this morning and met with the GI who said he is recommending we start her on Amitiza 24 twice a day, Elavil 10 mg twice a day and continue Miralax as needed. If these fail then she will get another cecostomy. The big indicator of her function is that when she was given the Bisacodyl by rectal catheter she did not react. The GI said it should have produced a bowel movement in 5-10 minutes. They repeated the dose (10 mg more) and still nothing. This was at 4pm. She didn't go until 10 pm that night. Plus her scintigraphy showed delayed transit in her descending colon.

So here she is again. After 10 years of bandaiding with Miralax and other meds she finally was so distended and had so much gas they wanted more thorough tests done.
Posted 7/24/2011 2:46 PM (GMT 0)
thanks so much ,Ali, for your kind words. i will definitely keep you all updated. i'm so glad to hear your mom is more understanding now. it makes it all so much easier to cope when you have her support. i don't know what i would have done if my family weren't supportive of the surgery and everything. one of the most important things with going thru surgeries like that, or any other kind of crisis, is having the understanding and support of our families and friends. my drs didn't want to do surgery w/o meeting my mom first. they wanted to make sure i'll have the support i'll need after the surgery.

about recovering, most ppl feel like themselves again after the 6 weeks period. some ppl have a faster recovery and go back to work after 2-3 weeks!! it depends on so many things like whether there were complications, what kind and how severe as well as how your general health is. i have COPD, so it was important for me to have the surgery in the summer, cuz i usually get pnemonia or bronchitis in the winter and i didn't want to caugh hard after a surgery like that. i wanted to be healed abdominally by the time winter comes. i think if you had surgery around end Aug begining of Sep, and hopefuly everything goes well, you should be fine by Oct/Nov going on your family trip. for me, after 5 weeks i felt like brand new. like i didn't have any surgery at all.
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