Colon inertia part 2

Nanci-how is your grandmother doing?  I hope she is doing a little bit better!

Mary-do you come on here anymore?  I assume you are going great!

Ali-Yeah, I don't think you will have any problems after your surgery.  You have been, I think, numerous tests and doctors before this was even scheduled.  So, I think you are well prepared.  Your Christmas wish will be coming true!

Hodaya-how is everything going?  You decided to be a dental assistant, right?  You will be great at it!  I am sure the most nerve-wracking part is schooling again and the finances to make it through.  I know I deal with finances everyday now!

As for me, I still deal with a lot of gas that is either stuck in me, or finally, it will come out after hours.  I still take milk of magnesia to try and get my best bowel movements.  I usually try to walk around in the morning to help stimulate myself (other times it comes out okay).  Other times, I take the heating pad, or I squat down to the floor, relax right before I get in the shower to help.   

However, we have discovered why I have had left abdomen pain all these years, too, like I mentioned.  I just think it is sad that is seemed my stomach gotten worse after surgery.  I did read up on gastroparesis, and it said abdomen surgery could be a cause.  I think it just baffles my surgeon why my stomach got worse after surgery.  I am getting scared about my health because most days it is a struggle to eat.  Some days I am just so nausea all the time, I can take a few bites of food or just smell food, and get sick.  I become very indecisive on what on want to eat.  Other times, I can put a little more food in me, and then I am proud of myself.  I am just ready for a non-bloat, non-gassy, pain-free day!  I make supper my main meal in case I have to feel really sick, nausea, or burping because I know I am at home for the rest of night!  Then, I can try to go to bed, and hopefully, sleep it off.

Doctor's office called me on Friday.  We found Walgreen's to have a discounted price for the medicine they wanted to try me on, ethromycin.  I tried to pick it up yesterday, but they were out, so the pharmacist said they would call me tormorrow, Monday when they get it!  The nurse said my surgeon, and that gi doctor I met discussed my case.  I guess they are hoping the medicine will help somewhat.  I think they are most concerned about my nutrition right now!

When I faxed them those papers last week, about other gi doctors in bigger cities, like Chicago (the one my co-worker talked about), they are going to work on setting me up.  Better to do it now because it can take a long time to get an appt.  However, they are going to call around St. Louis, too because it is closer to me.  I think they are trying to find a good doctor, and one that does that gastric pacemaker surgery, so I could have a consult about it to find out more! 

So, right now, it is still just day-by-day seeing how things go!  I am ready to be stronger, instead of weaker.  Hopefully, social security will come through, etc.  I love ya all very much, and have a great Sunday!

Kyle - you sound so much better and definitely more optimistic.  That's the first step in feeling better. 

My Grandmother is now in a rehab/nursing facility but is still not quite strong enough to the the regular PT.  I can tell she is feeling a little better mentally because she told me she can't wait to get the hell out of there!  My three younger (19, 17, and 10) kids went to the Cape to visit over the weekend.  My oldest son and his girlfriend went down yesterday and back home tomorrow.  I'm glad they were able to spend a little time with her since you never know...

My mom had her right shoulder replaced Friday and is doing well.  She should be moving to her rehab facility tomorrow.  It went better than the last shoulder because it had to replaced due to a nasty fall in which she shattered her shoulder and hip.  During that surgery in 2004 she also had pins in her hip.  she has broken her right shoulder a couple of times but when they scheduled the last surgery she ended up having mitral and aortic valve transplants. 

As you can see, I don't really have time to not feel good.  I guess it's really easier that way. 

I did take reglan in the past, and it didn't help that much.  Plus, I was taking it everyday for quite awhile, and you are right about the side effects.  I was getting them!  I felt crazy, jittery, and anxious, so I discontinued it.  My surgeon and the gi doc, that he is consulting with, agree that it really isn't the best drug.  There was another drug they talked about that they liked, but it is not in the US anymore.  I looked it up, I can't remember the name of it now, but they feel the antibiotic, ethromycin, is a good choice to try right now.  Pharmacist should be calling me today sometime when they get it in. 

My Christmas ornaments, Yes, I am doing them!  At least I can do one thing, and it keeps my mind off of things.  My half-brother, he is the president of a farm company place, ordered 100 ornaments from me.  His company is celebrating 50 years.  I am putting there name, logo, and years 1961-2011 on the back.  They paid me half right now, so I can get the supplies, and I am getting the other half later.  Then, my aunt ordered some ornaments the other day.  I am trying to promote my ornaments on facebook, and a blog for people, so I can keep at least busy with that.  I like to decorate!

Nanci-yes, I am trying real hard to take it day-by-day.  I know, I can get very depressed sometimes.  It is just hard when you don't feel good, but I do try to plug along.  I am glad that your grandmother is starting to get a little bit better, too.  Also, like Ali said, it seems like you are a fighter.  Remember, you have to take care of yourself, too! 

Welcome CT-yes, you have come to a great site, and the people I have been talking to on this thread have been wonderful because I am sure your friends and family do not understand what you are going through.  what tests have you had done?  I see you are getting your small bowel soon, but don't forget the sitz marker, defogram, anal manometry test, and gastric emptying test.  Any more questions, ask!

Rosemary-Oh no, you don't need any more problems!  I sure hope that can get things resolved!

As for me, I have been taking erthromycin this past week, and quite honestly, I am scared to take it again even after this week!!!!  I was actually burping more this week, feeling sick, esophagus on fire, and I felt I wanted to puke the other night.  Also, it was cramping my intestines so bad, producing more gas, and felt like I had to go the bathroom, could let out little trickles here and there, but the cramping and gas was horrific!!!!!!!!     Reglan doesn't take away all my gastroparesis symptoms and doesn't help completely, but I think I could tolerate that more every now and again, but I couldn't take it long term like I have tried to do because it makes me very anxious, jittery, crazy!  These drugs have nasty side effects!

I think I manage better trying to eat what I can and taking my milk of magnesia every night to try and get my best bowel movements and get all this gas out.  I still don't know where all this gas has come from since June; I never wear jeans anymore.  I wear my windbreakers and pj bottoms, and that is about it.  I can eat or drink, and poof, belly feels horrible! 

The surgeon's office has made an appt. with for me to see a gi doc in st. louis on Oct. 31st.  However, there was one specific doctor I wanted to see that specialized in gastroparesis and knew the surgeon that specialized in the gastric pacemaker procedure.  I just want to know more about it, get the opinion on that, too!  I am really trying to shop around here now and see what different doctors say about my condition.  I am coming to find out you need to!  well, I couldn't see him till Feb.  Geesh, why do things move so slow it seems!  That is ridiculous!  The surgeon's office did get me an appt. to see another doc.  It is the same gi doctor I saw a couple years ago that thought I was making up my nausea, burping, constipation, etc. before I had all my testing done and decided just deal with a local gi doc and surgeon before actually heading to Springfield to meet my wonderful colon-rectal surgeon!  I am not really happy about that, and I am debating whether to go or not.  I guess I can try, and I am hoping that since I have records to prove my colon was not working, my stomach is slowed, etc. he will take me more serious, and refer to me to another specialist at stl.  My friend told me you got to be firm going on in there because I can get flustered and upset, and not speak up for myself!  Not everyone can sit right by you, not ride off bills like your surgeon! 

I am debating if I get mad again, and I can get some medical bills, disability, public aid straighten out some more; just finally going to Mayo Clinic, so I can just get everything I need, do what they need to do, and recover.  I am ready to live life!!! 

Post Edited (hurtboy) : 10/8/2011 7:24:19 AM (GMT-6)

Thanks for all your help!  I just sent you an e-mail about some worries, and I just sent a short e-mail to that doctor.  He even had a whole powerpoint presentation on gastroparesis. 

Kyle

Ali - Your surgery is coming up soon, right?  You must be sooo excited!  What is the date and where are you having it done?  Lap or open?  If you don't mind me asking, how old are you?  I'm 25.  I've had so many doctors tell me I was "too young to be so constipated" and everytime I think about it I want to scream!

Kyle - I hope you can find a doctor to actually DO something soon.  You must be really strong to stay as positive as you do with how bad your digestive problems are.  I never understood why doctors just put off taking some kind of action (or admitting they don't know what to do and referring you to someone who might actually be able to help) in people with chronic issues like this, especially when it affects your life so much!  It makes me so angry for you!

Rosemary - I'm sorry to hear about your new problems :(  I've read far enough back on this forum that I've heard your story, and I can't believe everything you've been through.

Hodaya - Congratulations on making such a big decision!

I don't know if anyone can shed any light on this or not...but I just saw the results of both of my Sitzmarker studies.  They don't look like the typical colonic inertia results.  The markers are not spread as diffusely as you would expect.  Most of them are in the rectosigmoid area, and of course it says that the radiologist thinks I have obstructed defecation.  I've been told I had this before - paradoxical contraction, because of the results of my anal manometry.  I think that test was bad though...I know I was embarrassed and was kind of afraid to expel the balloon.  I went to two different physical therapists and did 10 weeks of biofeedback with no change.  Both PTs said I definitely did not have paradoxical contraction, as did two colorectal surgeons after doing digital rectal exams.  So I thought that case was closed.  I do not strain or have "unsuccessful" attempts at pooping.  I have good rectal sensation.  When I feel the need to go, I do without problems.  My defecogram (done the same day as the anorectal manometry) did not show any paradoxical contraction, and I expelled the barium without any problems.  I did have a grade 2 sigmoidocele and an emptying rectocele, but those shouldn't be an issue.  Could it just be that my motility in the sigmoid and rectum is slow or messed up somehow?  I just don't understand what is going on here...it looks more like outlet obstruction, but I don't have symptoms of that whatsoever.  My surgeon hasn't seen these yet, so hopefully she will have an explanation at my next appointment.  I just don't want to be dismissed again as not having a problem!  Normal people don't look pregnant and go a week without pooping.  I can't live like this much longer or I'm going to go (even more) nuts!

Hope everyone has a good week!