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Posted 7/29/2008 6:13 AM (GMT 0)
Yes, I'd very much like to have the names and ph numbers of actually all the doctors you've seen, at Rush, at Univ of Chicago, and Mayo.

Thanks a lot! and good luck with your surgery!
Posted 7/30/2008 8:49 PM (GMT 0)

I wouldn't recommend Univ of Chicago or Mayo for this condition....but my doctor at Univ of Chicago was Carol Semrad...at Mayo I'd have to look it up b/c they could only spare about 15 minutes with me after I had been there for a week...go to the Cleveland Clinic instead....at Rush it is Dr. Marc Brand  312 942 6500...even the doctor in Merrillville, IN was more helpful and interested in me than Mayo...his name is Dr. Hurwich...good luck!  I'll let you know how it goes...

Posted 7/30/2008 10:30 PM (GMT 0)

Ursac:

I had a total colectomy too 23 May 08. The entire colon is out. I have a ileo rectal anastomosis meaning my small intestine is connected to my rectum (no bag). I had this done because of polyps too in my colon ) The pedunculated polyps are okey ...can be removed by scope but the widespread, only surgery will be the best remedy. And to let you aware prognosis is not good with this kind of polyps. I had those.. and I am dx to be stage 1 colon cancer having FAP (familial adenomatous polyposis). The best help for this condition is to ,totally removed the colon to prevent further invasion.

I know how it feels loosing something but think of it in the positive way. Recovery time varies on each person. For me, I have no complication so far and still taking it slowly because I believe I don't need to rush up myself, it is for my own benefit anyways. I am 2 months post op now. I believe I could already work but I didn't yet, I am planning to go back September by then I know my body is ready to be back to my normal routines through God's will. I could already move around, do household chores, dusting and cleaning a bit so as walking a bit of a distance. Honestly though, I still have a little bit of sore and feeling a like some muscles are straining of my abdomen when I do too much. By that I listen to my body.. I take a rest.Those are best advice I could give you for your hubby if he's going for this procedure. Be ready to take time and have lots and lots of REST. 

Posted 7/30/2008 10:30 PM (GMT 0)
Thanks a lot, this was very helpful. I will not try and contact then any of the other clinics.
We have a surgeon here in Chicago, and we've seen another one at Univ of Chgo as a second opinion who was honest and confirmed that the removal of the whole colon is the only good alternative.

Since my husb has no cancer (yet) and doesn't feel sick, we'll wait till a little while longer, till your surgery is over and you are home - a few weeks into convalescence.

Good luck again and hope to hear from you again around end of August - mid-Sept.
Posted 7/30/2008 11:56 PM (GMT 0)
I hope it goes well....we have a mexico trip planned for the end of october...a well deserved vacation for my whole family......they have put up with a lot....i wish your husband well

Posted 8/10/2008 4:01 AM (GMT 0)
Hello everyone, I have my sub total colectomy on July 31, 2008.  The surgery went great.  I had 70% more colon that I needed so he removed 6-8 feet.  I had a terrible fight with all the bile for several days but I am better.  Today is my 8th day post op and i am eating pretty much what I want (execpt raw vegies, peanuts, etc. But I really feel better already.  I am going sevaral times a day these are still loose.  I look forward to having a somewhat normal life now that I should have regular BMs. Does anyone know how long these staples stay in.

Posted 8/28/2008 3:56 AM (GMT 0)
Hi. I had a subtotal colectomy on August 15th. I am still not running to the bathroom a lot. When does it slow down, and if you would share. Some like to scare me with thoughts of abstructions. Can someone share with me on these. I know I am trying to do too much too soon. The doctor said off from 6-8 weeks, is that about right?

Thank you
Posted 9/9/2008 7:31 PM (GMT 0)
I'm supposed to have a subtotal colectomy September 30. Can anyone tell me what to expect the first week or two post op? I'm supposed to be in the hospital 5 to 7 days but just wondered what to expect. Great pain? Nausea? Just wondering. Thanks.
Posted 10/6/2008 3:45 PM (GMT 0)
Hello everyone.  I am a new member and cannot figure out how to post a question so I am trying the reply.  I am told I need a subtotal colectomy after I failed a Sitz marker test.  I felt I needed a second opinion so I went to Mayo.  They told me completely the opposite of what my GI doc told me and I am very confused.  I have a lot of bloating and severe pain and, of course, constipation.  Some days I'm fine and then others I am not.  When they did the colonoscopy at Mayo, I was completely empty and the pain went away.  I had no pain and normal bm's for one week and now I am back at the beginning with tons of questions and no answers.  When you have colonic inertia do you have a lot of discomfort and pain?  Also, when you are relieved with laxatives, does this subside?  I feel totally isolated and alone because I have done everything I can to find out what I really need and I am getting mixed answsers.  My hope is that someone can answer some of my questions so I will know if a colectomy is what I need.  They tell me I have profound gastroparesis and I wonder if that is what is causing all my problems.  All my doctors tell me is I am a complicated case and offer no hope but more and more testing, all of which has been negative.  The gastric emptying test showed gastroparesis but Mayo said it would not be normal because of medications I was on that the doctors failed to tell me to stop taking but tests in the past have been normal with the same medications so I am thinking the Mayo may be way too conservative and I do have severe gastroparesis.  Do any of you that have colonic inertia have gastroparesis and if so, what do you experience?  I would very much like to hear from anyone out there who is having a similar problem getting the proper diagnosis and if so, what did you do?

 

 

Posted 10/6/2008 4:06 PM (GMT 0)

Zoie06--sorry to hear you are having such a difficult time.  I do not have an answer for you, as for my diagnosis is Crohn's, but I wanted to welcome you to this wonderful site!!

As far a posting a new thread, which I would definately suggest for your question, all you should have to do is click on "new topic" and sign in if you aren't already.  I hope that helps get the questions you need!!

Posted 10/6/2008 5:42 PM (GMT 0)

Hi there,

I am from Germany and I have dysmotilities everywhere in my digestive system, including the stomach (that means Gastroparesis).

Most doctors will tell you that surgery is only successful in people who ONLY have colonic inertia and that gastroparesis is actually a reason NOT to have a colectomy. I haven´t had surgery, and I do feel lonely and desperate as well. There is a very good Yahoo group for digestive dysmotilities, called "gastroparesis". There are tons of great people in it who have gastroparesis, colonic inertia, pseudo obstruction and so on...

If you like, you can join it very easily!

Posted 10/6/2008 5:47 PM (GMT 0)
Zoie...I hope I can help. I went to Mayo in Rochester for a week of testing. I had stomach problems and constipation. I only went every 2-3 weeks. They failed to run the two tests that ended up helping me. Three years later I found out my gall bladder needed to come out (May 08) and had colonic inertia. I had the total colectomy Aug 11th. My doctor is at Rush in Chicago. He is a genius. The surgery did me a world of good. I had the bloating, pain, brain fog, achiness and just plain miserable. Get another opinion. My doctor is a colon rectal doctor. It never hurts to have a fresh set of ears on you.
Sugarbug
Posted 10/6/2008 10:46 PM (GMT 0)
danaalbertine---I read your post and I am so glad to know I am not the only one out here that has all these dysmotilities. The problem is my doctors cannot figure out what needs to be done. I would really like to check out the yahoo site you mentioned. How do I get on this site? What symptoms do you get when your gastroparesis is acting up? I have had so much discomfort and pain in the stomach area for the last two days that I cannot even work. I am going to my doctors tomorrow and I want to ask him if the gastroparesis can cause my colon to slow down. If your stomach is not grinding food it seems like the colon would be slow too. I am just as confused after going to the Mayo and I may contact Sugarbug's doctor in Chicago but I will need to ask her for his name. My primary care doctor thinks my gall bladder is causing a lot of my problem but that test also comes up close to negative. My doctor's are totally at a loss except to take out the colon. I think I need the rectal function study before I make a decision on that since I have only had trouble for three years since my abdominoplasty. I have been completely normal all my life before that surgery and now I never feel good. I am so glad I found this site as the desperation gets pretty bad.

Zoie
Posted 10/6/2008 11:14 PM (GMT 0)

Zoie

How are they testing your gallbladder?  I have had stomach problems for six years.  They only looked for gallstones with an endoscope.  Finally, a doctor in Indiana performed a HIDA scan.  That test measures the actual functions of a gall bladder.  Like I said, I had that out in May 08.  

Sugarbug

Posted 10/7/2008 12:28 AM (GMT 0)
Sugarbug

They did a HIDA
Posted 10/7/2008 12:31 AM (GMT 0)
Sugarbug

My fingers hit the keys and closed me out. They did a HIDA scan and my ejection fractions were a little low but not enough apparently for my GI doc. The surgeon said you don't have to have gallstones to have gall bladder trouble. I have this pain in the middle of my stomach that just comes on and spreads out over the entire epigastric area. I sure hope it is my gall bladder and that ends that pain as the Mayo doesn't think it is my gall bladder, but my primary care doc does. A lot of people have excruciating pain but my pain is annoying and consistent. Did you have stones or a disease nonfunctioning gall bladder and what were your symptoms like?

Zoie
Posted 10/7/2008 2:48 AM (GMT 0)

Zoie

I had a non functioning gall bladder.  My pain started one day as little nausea and headache.  I thought I was pregnant.  It was more annoying than anything.  Slowly, over months, it increased to the point where it felt like someone had a hold of me right at the v of my ribs.  I would lose all color and sometimes vomit and get into a fetal position. and have to ride it out.  I had to live everyday by not eating at all and only drinking around probably 24oz of liquid.  No one even considered my gall bladder it seemed more in the location of my pancreas.  Mayo's diagnosis was functional dyspepsia.  They said the nerves in my stomach where shot and didn't want anything in there.  They couldn't help b/c my weight is so low any painkiller was too strong.  Honestly, they didn't want to take the time to help.  I live 8 hours from there.  A big waste of time.  I did find out my stomach empties slow, my small intestine is even slower and my colon was worse and my rectal muscles don't relax when I need to go.  They didn't run the sitz markers test which would have helped me.  I also went to Univ of Chicago.  So, I understand the exhaustive search to find someone who can understand your problem.  The doctor at Rush, Dr. Marc Brand, really has an enormous understanding of all the problems.  He's not quick to cut either.  Are you in the Chicago area?

Sugarbug (Jennifer)

Posted 10/7/2008 7:41 AM (GMT 0)
Jennifer, no I am in the Florida Panhandle and that is a big part of the problem. They do not even have the means to do any kind of testing here and that is why I went to the Mayo. You know you have been a wonderful help because I believe a lot of this is a nonfunctioning gall bladder and my gastroparesis. This gets even crazier but they said my gastroparesis was caused by diabetes and I get lab work every three months and never had a sugar reading over 103 until May of this year. The Mayo said my sugars were not high enough for gastroparesis and feel like I don't have that but I couldn't stay for their test. The Mayo had me stop my diabetic medication and my sugars went up to 160 almost overnight so they were very wrong about the diabetes so I wonder what else they could be wrong about. They only gave me 15 minutes of their time and said I needed biofeedback to get my colon working and accupuncture. Tonight I am up because of the painful cramping in my abdomen and what is weird, I am passing stool with still no relief of the pain. I am tired of taking pain pills and just wants answers. I wish Dr. Brand was closer but the more desperate I get the easier it will be to get on a plane and fly to Chicago. When you had your gall bladder out, did all those symptoms you had go away? My pain extends to the pancreas area too and all I want to do is lay on my left side and hope by morning I feel better so I can work. I had no idea that the digestive system was so complicated that three sets of doctors cannot figure this out. I will write you when I get back from the doctor today to see what more he can throw on the mix.

Thank you again for writing to me and I will keep you posted.

Zoie (Linda)
Posted 10/7/2008 2:16 PM (GMT 0)
Zoie

I had my gall bladder out in May of this year.  I have to kinda watch what I eat due to no gall bladder.  Mostly fried foods or thick sauces...I went to my left side too.  I don't have any of the old symptoms.  If I have nausea, it's usually b/c I either ate something wrong or too much.  I do have to do the six small meals routine.  Before I had the total colectomy, I would have so much pain and bloating and having movements didn't take it away either.  Now, I am on the low residue low fiber diet and take two to three stool softeners a day.  I pretty sure that the small intestine is still  figuring its way and I'll get off that too.   It's only been two months since my surgery.  I was so dehydrated and exhausted going into the surgeries that even though I'm still limited to what I can do..it's a much better world.  I saw six doctors before I met the doctor in Indiana who listened to me than sent me to Dr. Brand.  I really don't have a lot of faith in Mayo.  They wanted me to stay there for two weeks and do the biofeedback for three times a day.  I'm suppose to do it now but I'll do it here.  One idea is to call Dr Brand and give him your situation and maybe he has a colleague in Florida.  I truly understand your situation.  I thought no one would ever help me; and that attitude was just in April.  I'm actually going out to lunch today for the first time in six years for my birthday.  I have not done that b/c I couldn't eat anything w/o getting sick.  And better yet I'll get to poop it out later!  Now I should buy stock in toliet paper! lol

Good luck

Jennifer

Posted 10/7/2008 4:30 PM (GMT 0)
Hi
I am from Lebanon and was diagnosed with Ulcerative Colitis 6 years ago. I have been on all sorts of medications (asacol, prednisone, antibiotics, remicade) but none seem to be working effectively as my body got used to them with time. I have lost a lot of weight in the past year and my GI suggested surgery: total colectomy. I am freaking out because i am still very young 23 yrs old. I have heard a lot about this surgery and the fact that you would have diarrhea all your life and a minimum of 5 bowel movements a day. I am very worried about recovery time and how long it will take since im planning to continue my graduate studies beginning february. Can i drive and regain normal activity a month after the surgery?
Since i am being so hesitant to do the surgery, my GI suggested one last trial of a new medication called Humera (shots under the skin) that is somewhat similar to remicade but taken every two weeks. I will give these a try before i decide on the surgery; (has anyone heard of Humera before, any suggestions?????? ..../In addition, i would still like to hear more about surgery option and about recovery. In Lebanon, it is not done laparoscopically since surgeons are not well trained in it. I have asked about and i was told that an open colectomy is done instead? What do u think about the open colectomy? Is is more painful???/
Thanks very much
Posted 10/7/2008 6:58 PM (GMT 0)

Moonshine

I had my TC done two months ago by laproscope.  I am just now beginning to feel real stable.  But I was dehydrated and completely exhausted and 38 years old (39 today!).  So, you have youth on yourself.  I don't have diarrhea and my movements within the range of 4-7 a day and that's with a stool softener.  I think that will slow up and my body heals more.

As far as healing, an open surgery will probably take alittle longer.  Everyone is so different.  I read about people on these boards who were great after three weeks.  If you could get the surgery done soon, you would probably be good to go by February.  Positive thinking and walking are the best recovery tools.  Good luck with your decision.  I am so happy I had mine done.

Sugarbug

Posted 2/5/2009 2:32 AM (GMT 0)
Hello I had a subtotal colectomy 2 years ago and since have put on alot of weight almost 60 pounds and wonder if anyone else has had this problem and how do you get it back off.......
Posted 2/7/2009 4:45 AM (GMT 0)

Hi Tweety,

I had my subtotal in July so it's  only been 7 mos;  so far I haven't had any problem with weight. I lost about 10 pounds after surgery and still haven't gained it back but am interested in if this is something that I will have to watch out for in the future?

I'm sorry I couldn't help you but if you would let me know if this was a gradual thing I  would appreciate it.

Thanks,

Judy

Posted 3/24/2010 1:40 AM (GMT 0)
Hi,

I have jusst been told that I nee a subtotal colectomy. I have a wonderful doctor in Florida but will be going north very soon. Does anyone have the name of a wonderful surgeon in the Boston area.  We live in CT but go to the Cape so Boston would be very convenient. Don't expect there to be any great surgeons in CT but maybe somebody could prove me wrong.

Roz

Posted 6/24/2010 8:37 PM (GMT 0)
My sitz marker studies are still within normal limits. Tell that to my backed up colon. Has anyone had a subtotal colectomy prescribed despite "normal marker studies?
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