Is it true, "colonic Inertia" that ostomies are only 13% effective?

• By jacy1
• Posted September 26, 2008 at 12:10 pm

Jcat

HAve your tests shown whether or not your small bowel has normal motility> It sounds like your tests show that the waste goes to you large intestine at the cecum. From everything I researched for me it does indicate that the odds of surgery working if the small bowel is involved are very iffy. But if the small bowel is okay, then a total colectomy has a chance.
For me my motility tests showed low normal motiltity. My horrendous constipation was due to at the rectum, with the shpinctor not opening, probably a nerve problem * (why nobody knows),
I knew going in that having surgery might not work, but I was in such bad shape, any small possibility of sucess I would try for.
Since my colon seemed to work, they did not remove any of my large intestine, but diverted it to an ostomy, so now I wear a bag. I still have some of the cramping issues and need to continue taking Milk of Magnesia, to make sure stool is soft enough, but I have had nine month of a decent life, that I did'nt have before.

In my internet searches, I have come accross, that in places like England, Japan, Germany, they had tried another prodedure with some success. Don't know what its called, but basically, they insert a catheter (permanenty like a port) above the point in the colon where motility stops, and a person learns to irrigate every day or everyother day to flush out the waste through the rectum.

jacy

• Reply
• Report post

• By flhawe
• Posted September 26, 2008 at 7:55 pm

Hi Jcat, I have GP along with slow and spastic small bowel. The surgeons felt an ostomy would not help the motility disorder however my large bowel was not moving anything through so I had an ileostomy. I had the BCIR procedure where they build a bag inside and you only empty it 3x day with a small plastic tube. the opening only as big as your finger. It is a relief not to down all those laxatives every day. I still have major issues with the small bowel and stomach but having the ostomy made life much easier. You can go on BCIR.com to research the procedure, there are three surgeons in US that do the procedure. At present I am on TPN feeding as eating causes to much spasms and pain and nausea. Hope all goes well for you.
Barb

• Reply
• Report post

• By JCatGuy
• Posted September 28, 2008 at 2:29 am

Hi,
The thing is is that test wasdone 4 months ago, and according to this surgeon this paralyzed colon can spread easily and usually does to small intenstine or even stomach too ad then surgery won't ehlp a bit.
I don't know hwat to do.
I took CYTOTEC hgih dose all day and did mineraol oil enema retained on purpose and hte in moring 1500 ml enema and I got like the amount a cat would poo. it's all like a ROCK on my right side!
And this jerk GI guy said, "it's impossible to drink GOLYTLEY" and not dissolve everything and release it all.
I told him 4 years I've been on that or miralax 8-10 scoops...does NOTHING...but makes me vomit and often I RETAIN THE GALLON OF GOLYTLE (one of the worst memories of pain my life).
He still pressure me, "ah but the next day it came out right" (getting nauseated just typing it)...I saidk, no took days and got nothing but perhaps some browhn water, but, I was by far clean cause COLONSCOPY PREP FAILED!!!!!!!!
So nasty...and we're talking about our lives. Can't eat now...even drinking.
Oh, sorry, Im feeeling really hopeless right now. THanks for rpely, JAY

• Reply
• Report post

• By JCatGuy
• Posted September 28, 2008 at 2:36 am

Did you do a sitz maker or Scintigraphy for your motility testing. I had the Scintigraphy and like the minute they see that after 120 hours 96 but it was extrended) was still between CECUM/Ascending colon, they don't even do rectal exam or palpate my stomach...
I think they push the GOLYYELY on me so I leave their office. Perhaps fear of lawsuit or just uncaring MDs.
I'm so confused, but like tonight.....I was bleeding from rectum and it was night with 105 fever (hadn't had fever in 5-9 years) and I don't know if the CYTOTEC dose which kil;ed me in pain all day and night, pushed some impacted or calcified stool and perhaps perforated colon...but, fever down to 102.2...and i just have no where to turn.
So, NYC...means nothing i guess unnless you can afford the best MDs otherwise, you're just a nothing to them.
I"M A HUMAN BEING AND WANT TOLIVE.

Glad your life is somewhat more stable although I know it's rough...so you hang in
and also JACY YOU TOO
THNKS FOR BOTHREPLIES>.jay

• Reply
• Report post

• By flhawe
• Posted September 28, 2008 at 6:41 pm

Hi, sorry you are still getting no where with the MD's, I went through the same thing. No one wanted to do surgery due to the problems with small bowel and stomach. Finally found a new PCP and a surgeon that agreed that an ileostomy would be necessary. Most days I still cant eat and have pain and nausea but the TPN does great but it is a relief not to have to deal with gallons of laxatives every day. The internal ileostomy has made my life much better. I feel your frustrations as I went through this also. I had a sitz marker test done also and all markers remained in the large bowel. Keep your spirits up, I went through two years of what you are going through and several hospital stays and it was not fun.
Barb

• Reply
• Report post

• By JCatGuy
• Posted September 29, 2008 at 1:57 am

So glad that the internal Ileostomy worked out for you. Oh by the way, I'm going through this for about 2 years now (and it was never like this)....I have constant pressure in my upper stomach now (not just the colon) could just be large amoiunts of stool that won't pass in transverse colon or it could be my Small intestine already for my motily test was 4 months ago and surgeon said, it could have easily traveled (the disease-paralzyed colon/colonic inertia) to other parts of your digestive systme.

Now, this MD wants to start from SQUARE ONE w/3 days of 1 gallon of GOLYTLEY...that stopped working for over a year ago, and you know, "HE WOULD NOT BELIEVE ME"..."IMPOSSIBLE" he replied...because it liquifies the sstool.

It's like im impriisoned.
ANyway, thanks again, jay

• Reply
• Report post

• By curlyq24
• Posted September 29, 2008 at 8:19 am

Hi,
I have been dealing with similar symptoms like what you describe for the last 8 and a half years. After trying every motility drug on the market, being tested at Mayo Clinic, Milwaukee Clinic and Temple Hospital, I was fed up. I tried a cecostomy to attempt anterograde enemas, which unfortunately were unsuccessful. Then I tried an ileostomy and finally last year I had my colon removed in 2 stages. I am doing MUCH better now. Though I still deal with other symptoms (in my stomach and small bowel), the nightly obstructions that I was getting in my colon are gone.
If you have any other questions, feel free to ask me. I would also HIGHLY recommend my surgeon, Dr. Adrian Greenstein in Manhattan.

• Reply
• Report post

• By flhawe
• Posted September 29, 2008 at 12:50 pm

A gallon of go lightly would make me vomit. I too still have daily problems with the stomach and small bowel same as you but since the removal of the large bowel I too am not bothered by the daily suffering from constipation and spastic colon. I saw several GI MD's until the last one sent me to a motility clinic and same as curlyq24 none of the motility drugs worked and the go lightly never worked for me either. Many MD's will be reluctant to take out the large bowel and put you through years of laxatives and tests. My surgeon was Dr Ernest Rehnke at Palms of Pasadena Hospital in St Petersburg, Fl.

• Reply
• Report post

• By JCatGuy
• Posted September 30, 2008 at 4:47 am

Hi,
That's why I canceled my appt. w/this "Motility expert" who all he has for me is what I've been on for years, Miralax (GOLYTY) and stuff like CYTOTEC and yuo know I remember just 2 or so years ago, when Zelnorm was still on market, as much i didn't like the way it made me feel (Oh, I'd have to take it with Amitiza)...and I'd go to sleep at let's say 1am and awake w/heart pounding by 6:30am and have to lay in bed suffering and suffering and kept pressing my belly until usually by 9:30 or 10:30am SUDDENLY, I knew I could go. I Look back as those days (where I thought I was suffering) as "the good old days".
Then, the lactulose, the miralax, castor oil, senakot, biscodyl, cascara, aloe vera, Amitiza (which gave me one tiny movement, 1X)...and I was also taking Colace and Miralax and high fiber diet w/exercise.
How I ended up getting worse and worse, I have no idea. But when ZELNORM was pulled i had just that week decided, "ENOUGH" w/this stuff...this can't be right. I still have some bottles...tried recently and NOTHING. Took it w/Biscodyl and Senna...and Milk of Magnesia and nothing.
THen I got into the FLeet enemas...they held me okay for 3 months...until, the stool was too high and it never worked again.
I ended up w/Tap water enemas w/Mineral oil retention overnight and you know what, I get out (if I"m lucky) like the amount of a small dog.

Two days ago...w/the 105 fever, when I tried CYTOTEC (took a lot that day) thought it might work it's been long time...and all night I thought my intestine on right side (which is the side my motility study is where all activity stops)...cecum to proximal side of Transverse colon)...and later that night I began bleeding rectally 105 fever, still don't know why.
BUT YOUR 100% RIGHT...I GO TO A GI MD and they say, "you must see a surgeon" and I see a surgeon" and they say, "probably won't work, I'm sending you to motility GI"...and I'm like a ping pong ball that's suffering; a sufferingn nobody can see (except for my severe weight loss).
So, now I have an appt. w/cheif of Surgery at Mt. Sinai in Manhattan, and I PRAY...something happens good.

Problem is, is that if the bleeding is from either prolapse, or severe internal hemmohoids (which i've always had but nothing like this)...it's a NIGHTMARE...can't sleep on right side of belly (cause it's like I'm laying on rocks.
Don't know, what to do...Transportation into manhattan is wiping me out...parking is impossible...and well, it's affecting my entire life (top to bottom) negatively) and I want to stabilize my life, before I end up, who knows where, of course, the pain is greatest motivator...I know tmorow when I awaken I'm going to have to go and I won't be able to and next day is Surgeon's appt.
And I'm so weak. So tired. Just wanna stay in bed sometimes and just, "STAY THERE">..but, can't.
Why is it that these GI MD's are so "cruel"?

• Reply
• Report post

• By JCatGuy
• Posted September 30, 2008 at 5:14 am

Another question,if you don't mind?
Can you eat? I sure miss eating. Just had 2 puddings...and soft cookies and already, i'm cramping.
I just hope that in the 4 months since motility test results, that this disease hasn'tspread to small intestine or even stomach.
Still can't believe they discharged me after being their 9 days, extending the Scintigraphy test 4 a 5th day, instead of 4...and still the radioisotope was mostly in cecum and flexure heading some hit ascending colon. NOT A WORD From my attending GI MD! Not only that he never responded to phone calls by me...
I come into mt. sinai from the other end (Queens). jay
PS...wrote u message too

• Reply
• Report post

• By flhawe
• Posted October 1, 2008 at 1:45 pm

Your story is so much like mine. Ping pong effect with the MD's and surgeons for years. I think because they know if they do surgery to fix the large bowel they can't fix our motility problem so are reluctant to do a colectomy an/or ileostomy. Fortunately I did find an excellent surgeon that had previous patients with the same disorder and took me out of my misery with the laxatives and non functioning large bowel. I am never hungry, constant right abdominal pain that increases in intensity when I eat. Also I have severe nausea until around 2 pm. Usually late in the day I will have some crackers and 1 slice of processed cheese and/or a bit of peanut butter, I know I will be going to bed soon so the pain will go away. I probably would be more comfortable if I took the pain medications but I hesitate to take a narcotic all the time, I take them only when the pain is severe and/or I am at a social event and do not want to go home. The pain med MD told me only Percocet or Vicodin will relieve organ pain, blocks will not work. If I really have a craving for something more than crackers then I am prepared for pain medication and debilitating nausea the next day so that is a rare occurance. If I risk it I eat small am't potato or rice or go all the way and eat a grilled cheese sandwhich and it helps my mind. lol (bread is usually too heavy) I have not attempted meat in 3 years, when I ate meat I had a fever all the time and lots of pain. If I risk anything and go big time I will eat a little bit of fish. It bothered me not to eat at first but not anymore, I am more comfortable when I do not eat and not as irritable with my family. I have stayed out of the hospital and gained my wt back since the TPN. The jejunostomy feeding tube was a disaster. It put my small bowel in spasms and I had three surgeries so far to deal with granuloma at the site. It is still painful and I think it has not healed inside so they will not talk me into another one anytime soon. I dread going back to the Dr next month as I know he will say I need to have further surgery. I went through two GI MDs the last one sent me to the motility experts who basically said after Zelnorm and erythromycin did not work that there was nothing more they could do. My last hospital stay the GI MD said he could do no more for me. I have a great PCP and have come to realize I have to live with it so I get on with life, try to think positive as I know there are no answers out there for us and no meds at this time. Unfortunately for you you are still dealing with the colon issue. I am glad I have the ileostomy and do not have to deal with the extra pain and laxatives and fever when I had the large bowel. However having it removed did not make me well, it just eliminated one of several motility problems. Keep your chin up, realize the GI MD's do not have any answers so they push us away instead. Get a good PCP that will give you anti spasmotic medication, nutritional support and pain medications. I was told by my dietitian that she has had patients on total TPN for 20 and 18 years and they are doing great. So I have some comfort knowing that as TPN is risky also. Take care and let me know if you need any further information.
Barb

• Reply
• Report post

• By JCatGuy
• Posted October 2, 2008 at 12:49 am

Hi Barb,
Thanks 4 writing again. But, I have to tell you...I really love to it, and it seems (unless perhaps I'm mis-reading/misunderstanding) but, that so much of the side-effects and the pain goes onward...I'm honestly worried that maybe surgery is worse (I mean, for me...not you, clearly you're functioning and so on). I can barely move off the bed 1 or 2 days a week and that's only if I get something out via these horrible enemas.
Now today, I finally saw this Surgeon at Mt. Sinai and well, I don't quite understand what he said. Perhaps I went numb when he looked at my Scintigraphy results from the computer at the hospital (I didn't even have to show it to him), and he immediately said, "you need surgery, you know that don't you?".
I said, "yes, but I heard it might not help and so on.
He said EXHASUTED but responsive....except, I asked him, is it true that people w/Colonic Inertia only improve 13% of the time and if so, the dangers of surgery...is it worth it? He said, "no". So I looked at him and didn't know what to say, so I said, "So you have a sense of humor?"...but he didn't really respond.
Then he seemed to awaken a bit and said that his approach w/me, and he pointed out how weak/skinny/bad I look is that he would give me an Ileostomy but leave the colon in me. I said, but, you see the epicent of my pain is the right sided colon...you keep that colon in, won't that pain just then still be there? He replied, "When we open you up I will check your right side and if there's fedcolomas, necrotic tissue or anything that would cause you pain, I will clip it at both ends and cut away the "painful" part of the colon. And then, after you put on some 20-30 pounds, go back in and takeout the entire colon?
If that makes any sense at all?
Anyway, I forgot to tell him, and this bugs me so much, because when they did the Scintigraphy Test I was impacted but they insisted on doing the test and only afterwards, trying to clean me out.
So, you see I'm all confused. He wants me to call w/an immediate date (like within 5 days or so) for surgery. But I have so many doubts.
Yet, the pain pushes me towards the surgery...just don't wanna make the biggest mistake of my life.
I have urinary retention as it is, where I must stand move my legs, press lower bladder for 15 minutes and then it usually can alleviate myself. I asked him if I'd be able to push hard on my lower belly/bladder after surgery, he said, "why not" so casually.
Another doubt.
I forgot to take his card, that had his email on it, and the next time he wants to see me is in surgery. Really the whole thing lasted tops 10-15 minutes and guess I was hoping for a little more "feelings" or understanding that I'm scared to death.

Sorry 4 the length.....Thanks again, Jay

• Reply
• Report post

• By jacy1
• Posted October 2, 2008 at 10:33 am

jay
I know how scared you are. I dragged on the decsion for me about four month, scheduling it twice, butr finally in December of last year I knew if I did not try it, I was going to die. Fortunately the surgeon I had was great, He explained everything, told me to try anything/everything first, even called me at home several times to answer more questions.

When I finally went into the hospital January 7th, I think my husband had to almost carry me, I was hysterically scared, shaking etc. They gave me something to calm me down, after that don't remember much except waking up thinking " I'm still alive".

Like others have said, the colostomy has'nt solved all the bowel spasm or that I do have to be careful on what I eat and when, so I don't get a bunch of pain in the mid section of my abdomen, but its great not to have to drink Golytely everyother day, take several enemas everyday and I do not have the horrible right sides pain.

Actually, I had only one scare since, and felt I might have an obstruction, and it was a food bolus, I forgot to take off the skin on an apple and had a problem. I won't forget it again. But the surgeon thinks my output is regulated enough that if I want to would be agood candidateI to irrigating the stoma, and then would only need to wear a cap over the stoma, as opposed to a bag. Don't know if I want to but its one more step in a "security blanket" for me. So next week I'm going to the hospital to have the ostomy nurse teach me how to do it.

I think before you decide, you have to feel confdent in the surgeon. CAll his office with a list of questions, find out how many of the these type of surgeries he has done, ask about all the potential side effects. See what you can find out about his reputaion etc.
Find out about the hospital, infection rate etc Oh and find out if he would do the surgery thru laporoscopy or open abdominal surgery.
jacy

• Reply
• Report post

• By flhawe
• Posted October 2, 2008 at 5:50 pm

Hi J Cat, I agree with jacy1, it took me quite some time to accept the fact before I had surgery but now I am glad I did. However you have to realize if you have a motility disorder and GP you may still have the right sided pain. Its a bummer however you learn to live with it and know when and what you can eat over time. I wish we could tell you that the surgery will take away all your problems but it might not. I agree with jacy1, having the surgery did give me more quality of life and that is truely what we are all looking for. I was where you are at and I am at a better place now, its not great but that is okay as I know there is not much out there right now for us. It is a hard decision but one you will have to make soon. My thoughts are with you through this difficult decision.
Barb

• Reply
• Report post

• By JCatGuy
• Posted October 2, 2008 at 6:39 pm

To Jacy,
Thanks for your reply. Actually, that was why I picked him becuase he couldn't have had higher credentials, from being the Chief of Colorectal Surgery at Mt. Sinai, to being Top Connely top Surgeons many years, as well as He is a former President of the New York Society of Colon and Rectal Surgeons and is a member of several committees to the American Society of Colon and Rectal Surgery.
He also Dr. Steinhagen was the first surgeon to use a "colon J-pouch". So, he's got the skills. Perhaps, just not the ability to alleviate my fears.
And I think I'm getting on his nerves now because, I did write him like a 2 page email w/concerns and he responded, "I found only 2 questions" and he answered them.
And then I had a couple more questions, for example when I had the Scintigraphy/Motility study, I was impacted and hadn't move bowel in 17 days...so I asked him, point blank (since he's basing everything on that study done 4 months back) that because I was supposidely impacted, couldn't that have confounded the results?
I also am concerned that the surgery will bring back my severe urinary retention and that's is frightening to have a bag and a tube inside (that too). I can't get passed that fear. I don't know what's worse blowing up my right side slowly or taking a chance he may help me or may not during surgery, but end up back w/that Foley Catheter (w/the blockages, infections, etc.). It's almost all too much for me to bear.
However, I feel like I finally have a TOP NOTCH Surgeon...and lately, I've been going out a lot for appts and although I cannot move bowels to save my life...it's coming low enough at least as of recent, that enemas are having an effect on me again (although it's hit or miss).
I have not been dx w/Gastroparesis or small bowel, but the "severe global colonic inertia". I've heard the disease can spread to SB and Stomach though very quick, so by now it's 4 months and I don'thave a clue. I guess I wanted to know if he felt the test was reliable since I was stopped up at the time.
On the other hand, I fear my email questions may have just pushed the best MD I could've have gotten 4 myself.
Actually, what I always wanted was to be 100% cleaned out from Cecum to Rectum using the Irrigated Pulse technique where there use a colonoscope to inject a stool solvent (I believe gastrofin) and to give me a fresh start and see, if my body can right itself If I exercised, ate healthy as I used to...or, maybe I'm just in fooling myself there too. That's how lost I am.

Anyway, I just found out now his office is only open 2 hours tomorrow and I'm already tense...as he didn't respond to my 2nd email, whereas the first he did within hours. And well, I can go on and on.

• Reply
• Report post

• By JCatGuy
• Posted October 2, 2008 at 6:59 pm

To Barb,
You know I so appreciate your support and you're positivity. For it's been such a long horrible road, that I perhaps have lost objectivity...certain things I have though actually lost, which I wrote about initially to the group and in addition in this hard time, well, the noose is tightening in every direction. I mean, 4 example, just a trip out to the city and back is $100...not working, disability...can barely even think about handling important matters because of the pain. Now pain meds, may help temporarily but I like to "feel life", but I have severe necrotic bones and well, actually lately the pain meds are really helping my stomach/cramping more than the what they're meant to.
My sleep clock is upside down.
And I don't understand why the right side pain would remain? I don't get this.
It's like it went from severe constipation to a severe disease overnight, and I didn't need yet another one. And there's no vindication, as in, "you see, I told you I couldn't help this"...because people get frustrated and move on (unfortunately, it's happened to me). It went from being minimized to, "too much stress".

Oh, this is so hard.
Does "Colonic Inertia" w/out GP for example, is that considered "Motility Disease"?
Anyway, I'm feeling lot's of pressure in rectum right now (meaning oil retention tonight/enema tomorrow)...and pray I get something out, although, I know the pain on the rightside and whatever is there (3 large lumps)...never moves anymore.
Ultimately he planned to not take out my colon and just to start w/giving me a Ileostomy, and after gaining 20-30 lbs., then when he felt I could handle it...but, I asked him, but, that's the epicenter of my pain, the right colon. So he said he would remove that part if there was a hardened mass of feces. Now if there isn't...then woe for me, becuase then I'll have went in for surgery, only to have the same pain and a life changing surgery, which I don't have the energy for in terms of cleaning, learning, maintenance.
Sorry for the rambling....Take good care, and thanks again....Jay

• Reply
• Report post

• By flhawe
• Posted October 2, 2008 at 9:25 pm

Dear J
Hopefully you only have a diseased large colon and not the entire GI tract motility disorder that I was diagnosed with. In your case the surgery maybe the end of the pain. You will have to trust your MD's and do what is best for you.
Barb

• Reply
• Report post

• By JCatGuy
• Posted October 3, 2008 at 1:01 am

Thank you Barb, for the inspiration and hope! Needed it.
Take care, Jay

• Reply
• Report post

Add to the discussion