HealingWell
Search Close Search
☰

Colon Inertia Part 3

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/15/2011 12:49 AM (GMT 0)
Hello,

I've posted a few times before. I think the last time I posted I was undergoing testing to get a loop ileo done. I ended up not having it done after a traumatic experience with the colonoscopy. Since then I haven't been back to that doctor. I have been to see a former GI who was really helpful and first diagnosed my colonic inertia. Unfortunately, he doesn't know how to help me at this point. I am sending records to a motility specialist and hoping to get in to see him.

Anyway, to update, a year ago I started have left sided abdominal pain that was intermittant. Now it's constant and get's worse when I eat. On average the pain is about a 4-5/10 and after I eat, or sometimes randomly, it will hit beyond 10. I get nausea, bloating, etc. I've been checked for gastroparesis and the test was normal. The GI thinks I could have bacterial overgrowth. I'm wondering if it all stems back to the colon. I am actually able to have a very small BM a few times a week now. I stopped taking all the miralax and lactulose because all it was doing was making the stool soft and it was so soft that I could push it out. So then I would have to do suppositories, stimulant laxatives, and sometimes enemas. Even though I have small BMs now, they are VERY hard in texture, and painful, and causes fissures. I'm also in pain afterwards most of the time. My diet is pretty poor and am unable to tolerate most foods. I eat mostly soft foods and liquids. I used to LOVE veggies and greens but now I get so sick afterwards it's not even worth eating it.

I'm starting to feel desperate and really thinking that if my colon were removed maybe I wouldn't be in as much pain as I am in. I'd be able to eat better and get my body out of starvation mode. At this point though, I'm afraid that a dr would think that I have improved and consider my situation not as serious anymore and therefore removing the colon, or even trying out a loop ileo, isn't needed anymore.
Posted 11/15/2011 3:04 AM (GMT 0)
All I heard from Lizzie was that the docs Allie was lining her up with were at Rush University Medical Center in Chicago where Allie is going to school. Rosemary
Posted 11/15/2011 7:31 PM (GMT 0)
Hi Gimpy,

I think seeing a motility specialist would be the best thing to do. I tried for years to get help and it wasn't until I saw a motility doc that they finally ran the right tests on me and offered me some solutions. It was a long road (I just had surgery last week and am still recovering) but seeing the right doctor can make all the difference.

I can totally relate to you. I am a veggie LOVER and haven't had any for so long, I can't even remember. Good luck and keep us all updated on how things are going for you!

Ali
Posted 11/15/2011 10:33 PM (GMT 0)
Hi everyone,

Ali-I read a few of your other posts!  Goodness, you have been through a lot.  I can't believe they sent you home without having much bowel movements.  I still didn't even eat anything until I had a bowel movement, which was mostly liquid.  I hope your nausea, bowel movements, etc. get better.  Yes, the surgery is rough!  I didn't realize it would be either for me.  Just remember to take it easy, and not overstrain yourself.  Also, I know how hard it is to get liquids down.  I have had always had the problem, even water, making me nausea!  I am praying for you!!!! :-)

As for me, it is just a day-by-day process anymore.  I still try to stick to mainly baby foods, crackers, things like that.  Some days I can get a little more down, but other days I am just like, uhh, I have to eat and drink!  I still get indigestion everyday, and I am so full of gas (hot air!) that just never, ever seems to go away!  I am trying to stay strong, but my gastroparesis is just horrible.  I never wear jeans anymore, only want to wear sweat pants, and I still feel like my abdomen can distend at any moment.  Probably why if I do try to eat the most, it is at night because then I can relax there with my heating pad, just in case I want to go for a short walk or something during the day.  I just don't think people understand how sick and bloated I can get from food! 

Hodaya-as for an ileo, I am not sure.  I guess my surgeon thinks if the motility in my stomach can improve a little, then that will improve.  Sometimes I wonder though because it does feel good when I don't have the gas in my intestines, then it can take some pressure off my stomach.  Digestive systems are confusing! 

I haven't heard from my surgeon's office yet about a future appt.  I decided if I didn't hear anything by the end of this week, I will call on Thursday or Friday to see how far they are on the process.  I hope my surgeon finds a good doctor I do get frustrated dealing with nausea and gas everyday!  Too bad I couldn't have gotten my stomach taken care of and colon at the same time! 

My art-work has helped take my mind off of things because I can sit here and work on them!  I did my first craft fair this past weekend, and it's not too bad because I just sit there and take orders.  Then, my friend takes the money and bags them up.  I am still amazed how I have enough strength some days.  I think I am one strong cookie trying to overcome, but it is good that I do not work during the week because I was very tired those nights.  If I did work, I would lose more weight, and feel so sick by the end of the day!  Just one step at a time. 

Gimpy-I am glad to hear that your gastric emptying test came normal.  I wish mine was tested a long time ago!  Right now, I did have my surgery, but I am still take milk of magnesia, and my gastroparesis has gotten worse!  I have always had trapped gas on my left abdomen as well, and then come to find out, I have gas there, too from my stomach for food sitting there for hours, explains why I get nausea and won't get hungry for hours.  My test revealed it can take 8 hours of so for food to empty from my stomach!  I hope you get the help you need.  Yes, find a good motility doctor!  I miss eating veggies and fruits, too! 

Oh goodness, poor Lizzie, I am really worried about her.  I think my surgeon was going to call around Chicago again for me.  I will keep her in my prayers!

Kyle

Post Edited (hurtboy) : 11/15/2011 3:37:19 PM (GMT-7)

Posted 11/19/2011 4:55 PM (GMT 0)
hang in Kyle! hope your surgoen finds you a really good dr! school is really not too hard thus not too stressful. it's generally a very basic info and very easy. we have a biology test next week, but im not nervous at all, cuz i'm so ready. glad you're accupying your self and those ornaments are really beautiful. you are truly talented! you could really be good to where i volunteer. it's at a rehab for kids with cancer and i volunteer in the art room. art is not my strong side and it would have helped if it was. if i were more like you Kyle :)

Gimpy, good luck with finding the right dr and i hope he can help you!
Posted 11/21/2011 1:43 AM (GMT 0)
Hi everyone, thank you for all your kind words. I am seeing a top motility specialist but can't get in until end of March, ugh. I'm on the cancellation list, so hopefully I can get in sooner. In the meantime he is having me go for an anal-manometry test, which I had done years ago and was normal then, who knows what it will be now, especially since my last defecography I failed miserably - couldn't get anything out! He also is having me do the Smart Pill test, which I am really excited about! I figure if anything is going to be able to help these doctors figure out what's going on, it's going to be the Smart Pill. I just wish it was sooner than March. My manometry test is scheduled for December and the Smart Pill is early March. I just hope I can hang on until then.

Kyle, I hope the doctors are able to help you gastropareses! Have you looked into a gastric pacemaker at all? I know some people who have one and while it doesn't completely help with motility, it does help a lot with the nausea.
Posted Today 2:17 PM (GMT 0)
Hey everyone,

It has been awhile!  After doing some research myself, I got a call from the U of I Medical Center in Chicago yesterday.  I got an appt. with a doctor that specializes in gastroparesis and the pacemaker procedure.  His name is Dr. Enrique Elli.  The appt. is on Dec. 28th at 11am.  I hope he can give me some suggestions.  I still feel sick a lot everyday, and it is like either one I am full, or I can be hungry at the same time.  Then, when I take a bite of something I can get nauseous, and I am like, uhh, why can't I eat and drink?  I am still trying to plug along and eat and drink what I can.  It is a struggle, and am tired of this constant gas and rumbling in my digestive system; I think it gets caught in my intestines as well.  It hurts a lot; there is so much air in my stomach because there is hardly any motility.  I am susprised how strong I stay sometimes.  I am addicted to the heating pad to help me pass my gas and stools, and still take milk of magensia.  Just want to be better and be able to eat normally again, and not be afraid of eating, or my stomach burn from eating.  Also, I am so tired of being feeling bloated most the time; everything is just getting old! 

I am still glad you guys like my artwork and ornaments on facebook.  I have done a few craft fairs, and people love them.  It sure keeps my mind off of things, and I can just sit there, relax, and work.  It is giving me some extra income at the time by people placing orders! =)

Ali-Glad to hear that you are starting to feel better each and every day.  It will take some time to get used to your new plumbing, and I hope your doctor appt. goes well today!  Let us know what the surgeon said!

Gimpy-My gosh, not until March till you can see a doctor.  It is amazing how long it takes to see doctors.  I think it is ridiculous sometimes!  Like I said earlier, I think it is amazing how people like us that suffer everyday can keep on going the way we live! 

Hodaya-Hope school is treating you well!  Hope you are learning a lot, and I miss you.  I am sure school has been keeping you busy.

Posted 12/3/2011 3:35 AM (GMT 0)
Kyle, This is great that you have the appt. Dec. 28 will be here before long. Best wishes. Rosemary
Posted 12/3/2011 4:59 AM (GMT 0)
That's great Kyle! I know you are relieved to have an appointment to look forward to. I hope they can help figure some things out for you so you can start to feel better already!

As for me, I had my post-op appointment with my surgeon today. I have been doing well, my gas went away and I feel good. I am able to eat a small breakfast and a protein bar or something else small during the day without looking pregnant. I still get bloated in the evening but that is after I snack a little and then eat an actual "meal". But it is still much less of a bloat than what I was dealing with before. And it goes away by morning after I use the bathroom (which it didn't before). I think it is just the way I am built, I'll always get a bit of a "food baby" after I eat a meal. I do better eating snack type things throughout the day instead of all at once. But as long as I am going to the bathroom and feeling good - that's what I need. I had a couple of slow days in a row this week but I took milk of magnesia the other night and it worked like a dream. The surgeon said it's ok to take mild laxatives like MOM or to do an enema if needed, whatever you have to do to keep things running smoothly.

Anyway, back to my appointment - the surgeon was thrilled with how I was doing and said everything seemed perfect. Knock on wood! She was very happy. Said I can eat whatever I want now, but of course I will still be taking it slow. No salad or nuts for me yet...I've been eating lots of fish and dairy for protein. Not quite ready for veggies or whole grains yet.

I look forward to when I can start exercising again. I know walking is fine but I like to jog so I still have some waiting to do. I hope and pray every day that I continue to feel good, I plan to start looking for a job in January which I am very anxious about!

I have been thinking of you all and I hope you're all doing well.

xo Ali
Posted 12/3/2011 11:52 PM (GMT 0)
Good for you Ali. Hope the success keeps up for you. Rosemary
Posted 12/4/2011 12:37 PM (GMT 0)
Kyle, that's great! i hope this dr can help you! i think your ornaments are great and i'm glad it's also a sorse of some income in addition to the joy of making them. can't wait to hear what dr Elli has to say!!

Ali, that was such a positive post and i so enjoyed reading it :) so so happy for you girl!! you're gonna make it great!! yeah, keep it very slow with food and even if you try, try only small amounts, k? but i have a feeling you will soon be able to eat everything you want.

Rosemary, hi :)
Posted 12/4/2011 5:00 PM (GMT 0)
Hi Hodaya, glad you are enjoying school and that LONG awaited career. Lots of work but you must be delighted. I ate tuna last night and it whaled through me ALL NIGHT LONG! THen my hormone patch gave me a rash. They stopped making my old brand that was perfect for me, so now it is trial and error to find another one that will work for me. Was on the phone with pharmacies all a.m. Nice and sunny here still but cool, but just right for me.

Gotta get out and walk then come home and crash for a nap. If I ever figure out a diet for myself it will be a miracle, but as long as no reobstructions everything else can be dealt with; 4+ years now and so far so good. I gotta be with it for Caribbean in Jan and Russia in April/May. I think I should have just stayed out to sea. Though I have to admit I like those little cessna planes. :-)

Rosemary
Posted 12/7/2011 6:50 PM (GMT 0)
Kyle, I'm so glad to hear that you have an appt! Have you tried domperidone for your gastroparesis? It's not FDA approved in the US, but many doctors recommend it for gastroparesis and order it from Canada. Talk to your doctor about it first, though, of course.

Here's an article about the gastroparesis diet: http://uvahealth.com/services/digestive-health-1/images-and-docs/gastroparesis-diet.pdf
Posted 12/20/2011 3:46 PM (GMT 0)
Hey everyone,

I hope everyone is doing well, and I miss you all truly.  I have been busy doing craft fairs, and I was suprised I had enough energy to do them at times because I really am having a hard time eating and drinking without feeling icky-extreme gas and air trying to let out, bowel habits weird, small intestines spasms, stomach gurgling all the time from food and liquids just sitting in there.  I am very ready to feel better and have more more energy!

Gimpy-thanks for the info.  I have looked at that website before, but it seems that no matter what I do; I constantly feel something most the time jumbling around in me.  I can take one bite of food and drink most the time, even baby food, and my stomach can start to distend.  I feel best most the time by eating a light breakfast; can get down a very small cup of coffee (I need a little caffeine!); not really eating or drinking all day, and then I can get down maybe a supper.  Just tired of feeling gassy, bloated, nauseous everyday; afraid to eat!  I did have my appt. next wed. Dec. 28th, and I got mad last Friday because they called wanting to reschedule until Jan. 18th; I was like, ugghhh!  However, I found out about a couple other doctors that specialize in pacemaker, motility disorders, and I got an appt. with Dr. Steven Schaefer on Thurs. Dec. 29th at 1pm.  I really hope he is nice!  I have tried reglan, ethryomycin, but I have never tried domperidone.  I guess we will see what this doctor has to say. 

As I mentioned, the crafts have kept my mind off of things, and I have thought about trying to do other things like wine glasses, coffee mugs, etc.  Everybody I sold ornaments to was so impressed by my work! 

Gimpy-when is your appt. again?  How are you hanging in there?

Ali-I keep seeing you getting stronger and stronger.  How are you holding up?

Hodaya-how is school?

Rosemary-how are you holding up?  I have read on a few posts that you are planning a cruise soon! 

I hope we all have Merry Christmas, the best we can, and I look forward to hear from you all soon!

Posted 12/21/2011 12:08 AM (GMT 0)
Hi Kyle,
Good luck with that doc. good for you for not letting them put you off another month. enough is enough.

Yep getting ready for cruise. Hope I stay OK, I have had some very weird food issues, but nothing major so that is the main thing.

Glad you are into doing the craft fairs. We all need something to get our minds off our guts the best we can anyway,

Have a nice holiday. Sincerely, Rosemary
✚ New Topic ✚ Reply
12