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snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/22/2010 10:17 PM (GMT -6)   
New here!

My question:

For those of you that have had the surgery how did you know when you were "ready?" How did your family/friends/etc. cope with your decision?



Here is my breakdown of all my medical ailments regarding my "colonic inertia."

2005-2008
Occasional constipation/hemorrhoids
(2007-2008 - more frequent bouts - once a week)
Some gastro problem - severe diarrhea, vomiting, laying on the bathroom floor, unable to control both - went to doctor - 3 IV bags, couldn't eat/drink for days)
August 2008
Went to after hours - thought I had appendicitis - sent to ER
CAT scan - determined I had terminal ilietis
Stayed over - met with gastroenterologist - decided to get colonoscopy
During visit lots of anti-nausea, dilaudid, etc. - made me hysterical and still threw up..
Colonoscopy - inflamed - diagnosis - Crohn's
Follow-up - began taking Pentasa
alternating diarrhea/constipation - extreme discomfort, fatigue (for about 2 months)
taken off Pentasa, began Miralax - lots of discomfort, nausea, hemorrhoids
Use of enemas/suppositories - tried probiotics, fiber supplements, laxatives, stool softeners, etc. - all gave worse symptoms
Second colonoscopy, CAT scan, SMART pill - looked "normal"
Took blood testing for thyroid, celiac disease
November 2008
Celiac panel came back abnormal
Went gluten free for over two months
Symptoms did not improve
No bowel movements without enemas.
Chronic constipation/IBS diagnosis
May 2009
Began various anti-depressants, anti-anxiety medications
Began therapy - bi-weekly to now monthly
Diagnosed - panic disorder, generalized anxiety disorder without agoraphobia
December 2009
Food poisoning - first thought it was very bad constipation - then turned to diarrhea/vomiting (friend also it as well). Went to ER. Non-stop vomiting. IVs.. anti-nausea medication. Sick for several days (no diarrhea past that initial day)
January 2010
Sitz marker test
Showed around 20 markers in various parts of colon
Diagnosed as colonic inertia
Again took blood testing for thyroid, celiac disease
Prescribed Amitiza
March 2010
Car accident - transported to ER via ambulance - anti-nausea, dilaudid in hospital - prescribed various medications
Took Ibuprofen about 3 weeks after
Clay colored stool
No improvements from Amitiza
Took anorectal manometry - "high resting pressure consistent with constipation"
Added fiber pills, more Miralax, etc. to enema routine - severe nausea/vomiting / iquid stool, unable to pass without enemas
Began taking rectal promethazine (sometimes unable to because of the severe fatigue)
April 2010
Stopped taking Amitiza (not formulary and it wasn't do anything)
Scheduled to take electromyogram, pudental nerve study, defacography (next Tuesday)
Currently on pramosone, Miralax, enemas, Lamotrogine, Cymbalta, Zovia, Flonsase, Claritan, multi-vitamin, Xanax as needed (maybe 1-2 times a week), occasionaly Promethazine for nausea when I'm not working
Most mornings I cannot eat (can drink) any breakfast until around 10-11.
Usual symptoms: extreme gas, bloating, nausea, lower back pain, "pushing" feeling against my coccyx, acid reflux, occasional "light" vomiting

I'd say I use several enemas every 1-2 days.

Seen 2 gastroenterologists. On second colorectal surgeon.

Surgeon says 50/50 chance I'll have to get a sub-total colectomy.

At this point I'm READY to get it taken out. I feel like I have exhausted every avenue and I've taken so many tests and there isn't anything else they can do for me (my GI doc even pretty much said we can try various medications but basically we're just treating your symptoms and I can't do anything else).

For me, I have pretty good support from most people. Although very few know how horrible I feel and the emotional toll it has taken on me.

The line I hear most, "can't you...?" mad

From what I've read around here people understand that eating more salad and bran for breakfast isn't a solution for some of us. smilewinkgrin

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/22/2010 10:49 PM (GMT -6)   
no salad is def not a big help with colon issues, lol. I had uc (my fav sentence btw) so its a bit different, but i can remember when i decided, i had never even thought about it before this.

We were at the beach with my family, my son had just turned one, i was in the room, in the kitchen, everyone else was at the beach, and i was up there, just waiting for my stomach to calm down so i could go see my son play on the beach and do things with him. I had already take 4 or 5 immodium and downed half a bottle of pepto and nothing was helping. So i was just standing there waiting.
And my Mom walked in to get something and she said my son was having lots of fun, and i just looked at her and i said, "will you think im gross if i have surgery?" and she said of course not, and we talked for a minute, but that was it that was when i decided i had already missed enough of my kids life and enough of mine! i went to the dr but he talked me into remicade so it was almost a year later before i acutally had surgery. after remi had failed i went back to my GI and said, either you find me someone to take it out, or i will take it out. And i was serious! I was at the point where i was actually hoping for toxic mega colon so i wouldnt have a choice.
noone tried to talk me out of it,but they all were sorry i had to do it, not because they were disgusted by the bag or anything,but because noone wants to see anyone they love hurt, and surgery hurts! My grandma said she wished she could do it for me. I remember calling my sister and asking her if she would think i was nasty if i had a bag, and she started crying and said,no ill just be happy you can do things with me again.
They were all very supportive, they helped take care of my son after i got out of the hosptial and couldnt do it.
It was the best thing i ever did, i should have done it so much sooner. so thats my story, and good luck with whatever you do!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/23/2010 11:16 AM (GMT -6)   
Thanks for your story. My grandma also offered to do it for me :)

fish1
Regular Member


Date Joined Jan 2010
Total Posts : 106
   Posted 4/23/2010 3:04 PM (GMT -6)   

I read through your list and thought God Bless You for fighting this long! I could not wait to get off the meds. That is what made up my mind!


50 yr old man, Colon Cancer survivor 2005
90 % of colon removed 2005 The rest 2-23-10
Illistomy scheduled for Feb-23-10 Done!
Healing up March 2010
<*(((((><


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/23/2010 9:56 PM (GMT -6)   
I have colonic inertia and some of the same symptoms as you...bloating, nausea, inability to eat at certain times, lower back pain....

Do you seem to have an outlet problem? Because I have an outlet problem and have to be very, very diligent about "forcing" myself to have a bm! This has taken over my life...

I feel horrible 90% of the time now, spend 3 or more hours on the toilet everyday, drink miralax like water, have been accused of having an eating disorder, etc.

I just had my defogram and will get the results of that test on May 6th when I go back to see my doctor. I have had all the tests, emg, pudendal nerve studies, anal manomety, anal ultrasound, sitz marker test, ct scan, colonoscopy, and now my 2nd defogram.

2 doctors recommended I have a total colectomy, but did not address the outlet problem...the 3rd doctor wants to deal with the outlet problem, then may look at a total colectomy.

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/24/2010 6:22 AM (GMT -6)   
@answers4me2

I do think I have some bit of an outlet problem. Lately I've been having trouble passing gas which I always have lots of. If I use enemas, I still strain really hard to get any sort of stool to come out. I use enemas on a daily basis so I don't get too blocked up.

My next 3 tests are on Tuesday. Not sure how long it'll take to read the results.

I had to take off work yesterday because I awoke with stomach flu like symptoms. I could only get in to see a regular internal medicine doc that isn't my PCP. He had a hard time figuring out what is wrong with me because half the symptoms were "normal" for me. His only recommendation was to have a clear diet. I knew it was something more than my regular issues because of a low fever and all over body aches.

How does the EMG and pudental nerve study happen? I get the general idea, but there's lack of information on how they insert the device, etc.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/24/2010 9:02 AM (GMT -6)   
I know I was scared that they would hurt, but they did not hurt at all...with the emg, they placed electrodes on my butt cheeks, right next to anus, and had me pull up like trying to hold back a bm, then relax, then bare down like I was having a bm. This test results were normal, my rectum relaxes like it should.

With the pudendal nerve test, I was a little freaked out when they wrapped a wet type thing around my leg and the tester had to stand on a grounding mat....I was thinking, ok, I am getting ready to have electricity shot up my butt.....****.....She wrapped this thing around her finger, kind-of like a splint, and inserted it into my rectum. It was a little uncomfortable because she had to insert it pretty far. She had me do a couple of test pushes to make sure I was using the correct muscles to push, which I was. She went 4 different directions and they fired the jolt each time....this was not painful, just felt like I was getting kicked from the inside into my rectum. This was also normal.....the pudendal nerves were working like they should.

I also can't pass gas...this has been an issue for me for years....if I am lucky, I may pass gas in the morning, but this takes a steady concentration on my part and usually involves urine leakage because I have to push so hard. By the afternoon, I can no longer pass gas and my stomach swells and can get quite large....it actually looks like I am 6 or so months pregnant.

I can not wear binding clothes of any kind. If I try on a pair of pants and they squeeze my abdomen at all, my stomach will swell and there is no chance of me passing gas....kind-of seems like my colon swells out of control.

I get up at 4:30am every weekday morning to go to work, I am a school bus driver. When I get done with morning routes, I am hungry and will eat breakfast around 10am. I am usually fine with breakfast and almost always eat a chicken biscuit and a cinnamon role. When I go back to work at 1pm, I may eat a bag of chips or some crackers....I can't eat again that day or I will get very ill with nausea and weakness and severe bloating. My mom has accused me of having an eating disorder, which I DO NOT have. I also can not eat anything with fiber in it....fiber makes me more constipated and causes severe gas pains.

I also drink miralax constantly to try and keep things as soft as possible. I have to be very diligent with this because if I let the stool get thick, like brownie batter, it is next to impossible to get out and will take 8 or more hours on the toilet because of the discomfort. This in turn causes rectal spasms and I can't function like that.

My outlet problem is so severe, I can't even get out diarrhea or water from an enema. No amount of pushing pushes anything out. Something is mechanically blocking the rectum and I am hoping my doctor can see what it is when he sees the defogram xrays????? And I am praying he can fix it, even if this entails me wearing a temporary loop ileostomy while things heal up. I am desperate for some relief!

On the 5th day of my transit marker test, 15 markers were in the ascending colon and the rest were in the transverse colon. None of them even made it near the rectum???? And my anal manometry showed high resting pressures and my sensations were off.

Have you had a barium enema?? I think I need a barium enema, but am very scared to get
one.

Do you take zofran for the nausea? This really helps me with nausea.

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/24/2010 11:27 AM (GMT -6)   
Sounds a lot like me! With my gastroenteritis right now I still went and used an enema this morning. Everything "felt" like it normally does with constipation.. then I went to make a bowel movement and everything was liquid.

I haven't tried the barium enema yet. I've drank the stuff and that made me ill for days.

I take Promethazine for nausea and it helps, but I just have to allow myself to sleep it off.

I have the same issues with clothes. I live in yoga pants whenever I'm not at work. I typically wear dresses to work otherwise.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/24/2010 2:30 PM (GMT -6)   
It takes ALOT of miralax to keep it semi-solid, but I have to be careful not to over-do the miralax also or else the liquid will come out around the poop, leaving the poop in the colon too long, which results in more constipation, then hard poop, then the dreaded brownie consistency poop.


Zofran works wonderfully for me because I can take it and still work because it does not cause me to be sleepy.

When I had the barium swallow, I had to drink alot of barium. EWWWW, it was just awful. I had white poop for 2 weeks...but, it showed my small intestine is working normally with normal transit times. Did you have this test?

I wonder if you may have gastroparesis???? Maybe this is why you are vomiting???

Is your doctor considering a total colectomy?

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/24/2010 3:11 PM (GMT -6)   
I normally don't vomit. Vomiting Thursday night I think was due to this gastroenteritis.

I drank the barium for my two CT scans.

My doctor is considering a subtotal colectomy. She wants to see how my rectum functions first.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/24/2010 5:34 PM (GMT -6)   
Snuggle, oh ok, so you don't vomit all the time? That is a good thing then.

Yes, I had to drink barium for ct scans, but I had to drink ALOT more for the small bowel follow through. It was awful and I could barely drink it all. It makes me shutter just thinking about it.

It is very good that your doctor has ordered the defogram to see how your rectum is functioning. It is embarrassing, but necessary. Please don't feel too embarrassed to push down to get the barium out. With my 1st defogram I did not push with all my might due to being fearful about passing gas, or making any gassy sounds while getting the barium out....this time, I did not care and pushed with all my might....no funny noises or any gas passing as the barium was stuck and would not budge.

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/24/2010 6:33 PM (GMT -6)   
be sure that you have your small bowel checked for possible concommitant small bowel dysmotility...your symptoms sound a little bit too severe to be caused "just" by colonic inertia.

did you have at least a small bowel follow-through?

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 4/25/2010 12:52 AM (GMT -6)   
Hi Snuggle,

I saw Amitiza on your list of meds, and that you discontinued it. One of my doctors at the Mayo Clinic called Amitiza "worthless," so be encouraged by that!

For me, Miralax, thine name is enemy! Miralax only builds up in my system, causing extreme bloating and pain. I can't get it out. You might want to give regular Milk of Magnesia a whirl to see if that works any better for you. As for the gas, consider trying Gas-X or activated charcoal caplets.

I would think long and hard about a partial colectomy. My surgeon hardly ever does partial colectomies because they have found that the patients get little-to-no relief from them. For some reason, with colonic inertia, it's an all-or-nothing game.

My pain had been going on for so long that I was ready for surgery long before any doctor put that option on the table. My parents had watched me waste away and give up many dreams, so even though they hated that I had to have this surgery, they knew it was the only chance for survival.

I agree with Pelztier. Please, please, please have your small bowel checked. You need to know whether you have a small bowel dysmotility, and how severe it is before having your colectomy.

Allie


According to my parents, I've had GI problems my entire life. Motility problems took over my life in 2004 at age 18. Tons of doctors later...
 
July 2007: Diagnosed with colonic inertia at the Mayo Clinic
November 2007: Total colectomy with ileorectal anastomosis
Post-op: Somewhat better, but I still have chronic debilitating pain (small intestine dysmotility)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise.
 
Psalm 73:26
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/25/2010 8:01 AM (GMT -6)   
What tests are for the small bowel dysmotility? I took the Sitz Marker test and all of them were in my large intestine.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/25/2010 8:17 AM (GMT -6)   
They had me do a Small Bowel Follow Through to check the motility of my small intestines. I could not eat or drink before the test....they then gave me 2 bottles of barium to drink....it was thicker than the barium they gave me for the ct scan....YUCK....after I got both bottles down, they took xray pictures every 15 minutes....mine moved through my small intestines in less than 2 hours which was a normal result.

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/25/2010 8:23 AM (GMT -6)   
haven't done that one yet. I wonder if the SMART Pill could also help diagnosis it based on time it took for it to move?

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/25/2010 5:09 PM (GMT -6)   
SMART pill could help establishing diagnosis for small bowel dysmotility but it is not the best test though it may be more accurate than a simple small bowel follow-through. An enteroclysis study however would be better than a SMART pill, and the best test would be a small bowel manometry. please keep in mind that there may be the possibility that the camera pill gets stuck if there is really a motility problem in your small bowel as well.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/25/2010 5:11 PM (GMT -6)   
Snuggle, I am not sure about the smart pill?? Is the smart pill still experimental?

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/25/2010 6:48 PM (GMT -6)   
Not to my knowledge, but of course I'm not an expert :)

It takes photographs all the way down. I'm sure they could figure out time-wise if something is off, wouldn't they?

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/27/2010 2:56 PM (GMT -6)   
Back from my latest 3 tests. Electromyogram? Piece of cake. Defacogram? Awkward. Pudental nerve study? Ouch! These nurses are angels to be able to handle these sorts of tests.

The nurses of course can't confirm any of my results for the EMG and nerve study, but she said things looked good. For the defacogram, I tried to get some information out of the doctor in the room and he said he couldn't really tell because he has to pull all the information and blahblah.. but I "might" have a rectocele. He kept questioning if I've ever been pregnant/had a child/etc. Nope. Supposedly in about 48 hours I should hear something back from my doctor.

I either have colonic inertia or colonic inertia and a rectocele. Would they try to fix the rectocele first and see if that solves my problem? I think my constipation and excessive straining has caused it.. but I'm not the expert and feel free to correct me :)

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 5/1/2010 1:39 PM (GMT -6)   
snugglesaurus
 Welcome... turn    If you have had testing done to figure out what is wrong and it says in 2010 that you have CI, honey if your colon is not working properly then something needs to be done.  They said I too had a outlet problem, but when they took my whole colon I no longer had a outlet problem...  It was just all the pressure from being constantly ill that made my rectal sphincter be clamped down.
I had a part of sigmoid colon removed in 2003 and they should just have taken my whole colon then because things just got worse and worse..
 
So when your so ill that you cannot live this way any longer and you have had all the tests done to confirm...you just need to do it and begin your new life.  Are they saying that you might have to have a appliance?  For me they just reconnected me...I am a happy camper...so best of luck to you.
 
P.S.  My family and friends thought I was dying so they were so happy and supportive that I made the decision to have the surgery.  Actually I sought out the surgeon and asked for the surgery...
 
Prayers are with you..
 
Leslie turn
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 5/1/2010 2:19 PM (GMT -6)   
I am praying that I'll know something Monday - it will have been six days since my procedures.

I am READY for them to yank it out. Don't think I'll get an ostomy. My mom has offered to "donate" part of her colon. My grandma has offered to do the surgery for me. I keep telling them I can live without it!

Just got from the drug store. Spent $50 on enemas. Fun times :)

Thanks for your input.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 5/2/2010 1:00 PM (GMT -6)   
snugglesaurus
  Why would you spend that amount of money on enemas when you can get a enema bag..  You know that doing enema's can stretch your colon eventually and laxatives can cause it to quit working also.  Have you tried Mirilax, it works for a lot of people but never worked for me...I hope you feel better and get answers soon..
 
Leslie nono
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 5/2/2010 1:22 PM (GMT -6)   
WaTerater ones cause horrible pain and they are a mess to deal with. I have tried Miralax and own multiple bottles. Doesn't help to move it any faster. I get less symptoms than most of h other ones but honestly the less I ingest the better I feel.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 5/2/2010 1:25 PM (GMT -6)   
Got ya, well I do hope you find ans. soon .........I have travled the road your on and its not fun.  Praying for you.
 
 
Leslie turn
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  

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