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TOTAL COLECTOMY PART 32

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Posted 2/16/2010 8:40 PM (GMT 0)
I just got home from my gastrograffin enema test and it went ok.  It turned out that I didn't have to drink the castor oil or magnesium citrate yesterday, because I onloy have my small intestine left and have my unordinary ileostomy. 

The tech had to call i.v. therapy for me to start an i.v., because she couldn't get a vein and then after getting it, the radiologist decided not to use it anyhow.  The most uncomfortable part was when they put a tube in my rectum and then blew up a balloon inside. 

This was my final test, thankfully, until I see Dr. Wexner on March 8.  My surgeon and radiologist say that my small intestines have healed fine, so I'm expecting surgery in June.  I am so thankful.turn

butterfly

Posted 2/16/2010 8:48 PM (GMT 0)
so glad you're done with all the tests! YAY!! not too now long till March 8. so happy for you!
Posted 2/16/2010 9:31 PM (GMT 0)
Hodaya...That is so crazy how far down yours was prolapsed. You must have been feeling so much pressure down there. I don't think that is my issue. On day 1 I could see some of the markers in the transverse all the way at the top but most were still in my small bowel. The only thing that I am confused of is...how can most of the markers make their way through only to have some still stuck at the beginning of the large colon. I know my sigmoid colon is very long because he was asking about childhood and if I had problems. I think he is worried about Hirschprungs. I don't think thats what I have. However, in my mind I must have some problem right where your colon meets the small bowel because I would think that certainly by day 4 there shouldn't have been any there at all. That I think is where I am most confused. I thought if there was a motility problem..it would be that the markers would be everywhere. Not at the beginning of the colon and at the end. But don't you think there is something going on with the beginning of the colon since some markers were still there at day 4? I can't wait for my last xray either. I have been able to go..quite a bit as this is my diarrhea stage..sorry TMI. I don't suppose any markers are left now.

Butterfly...so sorry that you had to do somethings that weren't even necessary but I suppose that just the fact that your small bowel healed fine is a great thing and makes it all worth it in the end. Are you having a bag reversed? I am sorry I am not too familiar with your story. It was so hard going back and reading every post but I will try and familiarize myself with you.
Posted 2/17/2010 12:29 AM (GMT 0)
Hopingforanend, I had a colectomy in Aug 07 for constipation, colonic inertia and anal sphincter troubles. It was successful until Feb 09. From Feb 09 until May 09 I tried all laxatives again, but nothing helped.

So, in the last part of May 09 I had surgery for an ileostomy. My ileostomy never started working, so 12 days later, I had emergency surgery. My small intestines were in such a severe condition that my surgeon had to take my small intestine thru my abdomen and attach it to a leg bag that is velcroed to me. I was very sick and had to stay in the hospital for 52 days.

We have waited a year in June, and my tests are all saying that my small intestines have healed. I am being sent to see Dr. Wexner at Cleveland Clinic on March 8 with my xrays and test results, and hopefully will set a date for my June surgery. The biggest problem with my leg bag is that the tube is small and gets obstructed very easily. Also, the tube is sutured to my abdomen and keeps coming unstitched, so I continuously am getting stitched up. It's been a very long and difficult year, but I'm praying that it's almost at an end.

Hodaya, thank you so much.. I never want to see another poop test for as long as I live! Have you tried miralax yet? It worked for me for about a week and then it stopped. It seems to help some people. It's difficult to say what works for each one of us. We're all so different. I hope that you'll find help that is not surgical, but if it gets too bad, an ileostomy or bcir won't be so bad if it truly solves our problems. I just promise myself that I am going to feel better..

Lizzie, I hope that you're getting your strength back with each day and that you're feeling better. You've been thru so much in a short period. You're my inspiration.

Rosemary, it's really cold in Florida and I wish that I were cruising with you.. Enjoy your cruise for all of us..

butterfly
Posted 2/17/2010 1:59 AM (GMT 0)

Hi Shannon,

First, I want to welcome you to the most friendly & knowledgable site ever!!!!  The people on here are the very best people you will ever grow to know and love!

I didn't see if you have pelvic floor dysfunction or not; if not, your chances of this surgery being successful are greatly increased!  My GI does a completely different sitz marker test than any other dr; I swallowed 50 markers and was x-rayed every day or every other day for almost a month.  After that time I still had markers at the beginning of my small intestine as well as throughout my small intestine and large intestine, this was while I still took my 2 doses of amitiza, 4 doses of miralax & 4 doses of lactulose daily.  It was determined that I needed most of my large intestine removed, keeping just 2 inches of it.  I had my surgery 7/08 and it has been extremely successful!  So it's really hard to say if surgery will or will not help, everyone is different and everyone has their own circumstances.

I do  know that my life has been full of continuing challenges but I am forever grateful to God for leading me to my GI and surgeon who has changed one part of my life like I never even thought possible; and I will always encourage others to seek help to be able to feel as good as I do!

I wish you the very best and pray that you find relief!

Hodaya-Don't ever feel bad for me girlfriend!; you know I have enough faith to get me through:) although I was really banking on one of my challenging students moving this past weekend and he showed up today!!!! says they are waiting until the summer now!!!AARRRGGG!!!!!!Oh well, I was meant to work with him so God is teaching me a lot of patience:)  I'm finally finding a balance at school so I should be able to be on here more:)  Can't wait to be talking with you more often; Love you!!!!!

Lizzie-Praying you are gaining strength and healing a little more each day; Love you always:)

Janie, Marisa, Tracy, Jenise, Jen, Rosemary, Butterfly and all the new people or any I missed-peace and prayers to you all! Praying for your comfort.

Love and hugs,

Judy

Posted 2/17/2010 2:00 AM (GMT 0)
Hi ladies,

Just a quick post - much going on here at home (nothing bad)

Hondaya, I know the reason where the sitz marker is confusing.. my GI doc told me! Your colon was probably long and redundant AND FLOPPY like mine.. with the test - they really aren't sure if my markers were in the transverse OR sigmoid.. because the inter-weaved each other. I'll never know - unless I take the test again.. and I have no plans to!!

I really feel my surgery did not do much - and I feel like I have a rectocele.. I should know, since I lived with one so many years! I cannot get the poo out without pushing up again.. this just so sucks! I will go back in a few months just to talk with uro-gyn.. but I'm gonna live with it.

I really want to catch up on you all!

Jen nice to see you posting again and FINALLY - you are starting the road to recovery. It's been a long hard journey.. and hope you'll soon be feeling normal again.

Judy ((HUGS)) always love to hear from you!

Lori, do we really live in FL? LOL.. I'm beginning to wonder! It's so darn stinking C-O-L-D!!!!

Lizzie, hope you are healing and recovering ... post as soon as you can!

Rosemary - keep having a BALL!
Posted 2/17/2010 5:04 AM (GMT 0)
Hello girl, We just out back from being out of town. We took the kids to Lava Hot Springs. It was so great. The kids had so much fun. This is a place with the mineral hot pools. I felt so good after sitting in them. And it really helped me with my bms. I swear I got up every hour to go. But I feel so much better. Must be the boiling hot water you soak in.

Well, gotta go to back so I can get back to my lovely job tomorrow.

Loves
Posted 2/17/2010 10:06 PM (GMT 0)
sickofbeingsick2  I cant figure out how to get to thread one so I can see what you have gone through and what I am going to go through on Friday???  Can you tell me a bit about what to expect???  Is it a huge incision? ect...hope so thanks Leslie
Posted 2/17/2010 10:43 PM (GMT 0)
Hi Leslie,

I'm sorry, I haven't been on here for a week or so and am a little behind on what is going on. Are you have your colon removed Friday? If so, is it scheduled to be an open surgery or by lap?

Kristen
Posted 2/18/2010 12:35 AM (GMT 0)
Hi Loves.....

so sorry for the length between posts. I am at my parents without my laptop and its hard for me to sit on hard chair as right now I am only 94 lbs and my butt bones hurt on the chair. I have tried to read, but thre are so many new people whom I welcome with open arms and so many of you I loveo so much and am not trying to ignore!!!! I think of you all and pray for you all daily and tell my mom of all of you as I lay on the couch trying to get better. I am eating pretty good, the weught gain is just slow. I cannot eat a lot at a time or I do get some nausea. If I do not empty my pouch (i learned this the hard way) I woke up screaming in pain and I thought I was going to have to have emergency surgery I have never been in so much pain, but one I irrigated the puch all the stool came rushing out and with pain meds I felt some relief. My blood clot has spread to my neck so they are concerned. I have to have US this week to see if it has gotten worse, but they are nervous becuase of how bad I bled to have be on blood thinners right now. I had my PICC line removed to decrease the chances of it getting worse and they switched me to oral abx nd infectious disease is following me here next week to see how my wounds are doing. The two look better, byt the one that is huge, i mean huge is so deep and painful. I am on 8 mg dilaudud and 5 valium every 4 hrs and its not helping so today they decided I need to go to a pain clinic. I am hoping to get in very soon as the pain is debilitating right now. This surgery is worth it as I know the pouch is going to work, I can just feel it, but the surgery with all of my complications has been very hard and I am so sorry I have been horrible at posting. I promise I will will update more often and read up pn all of you and post back. I love you all. Oh I get this huge tube removed next wed...a week early and I am so excited. It will be the true test of the pouch. I will post some pictures of what it has looked like if I can figure it out!!!!

Love to you all

Lizzie

Posted 2/18/2010 1:01 AM (GMT 0)
sickofbeingsick2
Yes, they are taking my whole colon...

Sue,, thanks for you input also, I guess I should of asked the surgeon ............well just got home from the hospital doing all the pre-op stuff, so I guess as long as my blood work comes back ok tomorrow, then no road blocks...just nerves...but I am a tough broad,,,LOL  I will make it through, and my daughter just got her from Calif to take care of me, and I am so happy about that.  My daughter especially is my rock...my son's are just scared of the whole situation.

But I am praying for a great out-come, I hope I hope I hope....so thanks to everyone for all your support...

Posted 2/18/2010 2:02 AM (GMT 0)
Hey everyone, Leslie I had an open surgery and my incision goes from above my belly button clear down to my pubic bone. So about 12 to 14 inches. It was a very hard recovery, but I am feeling so much better than I was preop. You will definetly need to take it easy for 4-6 weeks. I was dumb and went camping three weeks after and ended back in the hospital after coming home in an ambulance. So let people take care of you. Best of luck on your recovery.

Lizzie, dont worry one bit about not posting. We know you are trying hard to get well. Its just going to be a long process. But you will get there. Glad the pouch is working. Do you feel like you are getting any stronger?

Dont know what is going on with me. My bleeding stopped again but I worry about it. It happens once or twice a month. Very weird. Just so tired all the time and sick to my gut a lot. Like everyone else. I think a need an overhaul of my body. Im only 32 and falling apart.

Hope you all are having a good week. Talk to ya later., Love ya
Posted 2/18/2010 2:06 AM (GMT 0)
Honestwoman50,

My incision is about an inch above my belly button and then curves around my belly button and stops about an inch below my pubic hair. Actually I thought it would be a much larger incision then it turned out to be. I went into the hospital for my surgery on a Thurs. and was discharged the following Wed. It probably would have been sooner had I not vomited on Monday. The nurses initially thought I had become obstructed after I vomited. I later found out that the day before they had stopped my anti-nausea medicine without telling me. Once they gave this back I no longer vomited or felt nauseous. I think I was in surgery for 3 hours and then I was in the recovery room for a long time because my pain was so bad. Part of my pain was do to my bladder condition interstitial cystitis so hopefully you won't have to go through that pain. My lower back was also my primary pain area. I am not sure why but it hurt much worse then my front. They start you out slowly with liquids and then a soft low residue diet. I will be honest there were a few times that I was in tears because of the pain. It is a tough surgery, but I am so glad that I had it done! I think you will do better than I because of the IC I have. Were you diagnosed with CI?

Hello Everyone,

I am sorry I haven't posted in a while. Please know that I continue to pray for all of you. When I get a chance I will try to catch up on what's been going on with everyone.
Posted 2/18/2010 6:18 AM (GMT 0)
hello my dear friends! just a quick note, i'm posting from work, i won't have my computer for about 2 weeks!!! YIKES!! this is so unacceptable, really!!! anyway, i won't be on till then. love you all and will miss you lots!
Posted 2/18/2010 6:37 AM (GMT 0)
sickofbeingsick,  Yes I have CI, and a external sphincter muscle that is clamped down tight and the inner one does not work right in the rectum.  So he "the doc" said he thinks that my S. Muscle will work once he hooks me up with my new plumbing...because if it wont work after this surgery then I have to go to a colo/rectal surgeon in Portland, Or. for another surgery...

So hope this surgery fixes me.  Thank you for taking the time to share with me..

evans18
thank you for sharing with me.  I was so happy to get home tonight and find yours and sick's messages to me.  It is sure nice to know that we are not alone...

Posted 2/18/2010 4:04 PM (GMT 0)
Leslie, did you have a bm yet??? I sure hope so. Also, my doctor told me the total colectomy would not help me with the anismus, pelvic floor dysfunction. Why does your doctor think this will help you with the outlet problem? When is your surgery?

Butterfly, I sure hope you can get a regular ileostomy in June. Was the gastrogaffrin enema very painful? I somehow have avoided getting a barium enema. :-)

Lizzie, it sure is good to hear from you. Don't worry about posting. We all understand you are recovering from surgery right now. We only want you to get well and then you will be able to post away. I personally can't wait to see pictures of your scars and stoma. Since I have decided on the BCIR or k-pouch, I am especially eager to hear every single gory detail. LOL I don't think we can post pictures on here anymore, but you can email me with them. [email protected]
and maybe we can exchange phone numbers. I talk to Rosemary quite a bit when she is home.

Everyone else, I hope you all are pooping and happy.




smilewinkgrin smilewinkgrin
Posted 2/18/2010 6:21 PM (GMT 0)
answers4meTDR  the reason is because if you have CI you are usually not considered for the anal surgery if you have it.   So for now I am just hoping for the best, because actually at this time my pooo does not even get down their to even make me have a urge to pooo, and if I strain nothing still comes out...so I hope that this surgery fixes me and I can become free.................and living life again....thanks for your input..Leslie
Posted 2/18/2010 7:31 PM (GMT 0)
Leslie,
Good luck tomorrow, We all know how scary this surgery is, but it truly is going to make things much better....but for some of us, it's taken awhile. My surgery was 11 months ago, and I still have some issues with constipation, but miralax has helped so much.

The surgery itself is no fun; I was 53 when I had it so I was no spring chicken! I'm in good shape though, so I guess it could have been worse! I didn't have alot of pain after coming home, and while I was in the hospital I had good ole' morphine! I was in the hospital 8 days, and had to stay a little longer than some because my bladder wouldn't cooperate and let me pee!!

I had laproscopic surgery so I don't have any large scars, it amazes me they took out an 8 foot colon through those tiny incisions!

Off to an appointment now, but wanted to say good luck and let us know how you're doing!!

Hi everyone else, will catch up soon.

Janie
Posted 2/18/2010 11:31 PM (GMT 0)
Leslie....Good luck tomorrow girlie! I will thinking about and praying for you.

Judy...I am not sure if I have pelvic floor dysfunction or not. I am sure thats the line of testing next. I really don't want to have that xray done where you have to go while they take pics but I guess if it is necessary then I will have it done.

I am waiting for the doctor to call with my results. All I can tell you iswhat I have seen. Day 1 markers were still in small bowel with some making their way through. Day 4, many of the markers down toward rectosigmoid colon. Some were also still in the beginning of colon. That night I finally have my "D" and assumed that I cleaned most of them out. Day 7 only one left in the sigmoid colon half way up. I knew that the D had worked but that is the way my bowels go. So we shall see what all this means hopefully tomorrow. I am now wondering if there will be any more tests and if so then what.

Shannon
Posted 2/19/2010 2:53 AM (GMT 0)
Janie, I was going to ask you what happens if you miss a day of Miralax. I did and I felt so awful. I had major rectal pressure and very sick to my stomach. I was just wondering if we will always have to take it. And I am also scared what will happen if it stops working. I just wonder why things are still having a problem moving through. What did your doctor tell you about it? And then this bleeding issue I have, I just dont know what to do. I am so flustered right now. I thought by this time I would be feeling pretty well.

Leslie, we are all thinking of you and wishing you the best. Keep us posted on your progress. We are all here for you.
Posted 2/19/2010 3:51 AM (GMT 0)
Thank you to everyone for their wonderful support and information...  So it's all set, tomorrow at 1pm is my surgery....so I will be back on to report when I am able...
Posted 2/20/2010 2:56 PM (GMT 0)
Thanks Tracy for inviting me to join this thread. I've been trying to read and digest (haha) all the information in the posts. Leslie - sorry that I didn't get a chance to wish you well in your surgery before you left. Hopefully, you will read this when you return. Praying for success and for quick healing.

I've suffered with severe constipation for 40 years. I've tried everything during that time - and some of the treatments would work for awhile then my body would get used to them. For the past couple of months the only thing that is working is taking 4 Ducolax, then using a Fleet then manual disimpacting. Problem with Ducolax or any other laxative is that they cause me to have colon spasms. These colon spasms are unreal - they hurt so bad that I can't even speak and feel like I need to throw up.

Last week I had a colonoscopy by a good gastro doctor (as opposed to the quack I've had in the past). He said that my colon is very long and crooked. Now I'm only 5'2" and weigh 105 pounds so that makes me wonder just how much room that colon is taking up in there. Thursday I took the capsule for the Sitz Market study and will have x rays Tuesday. Friday I see the doctor again.

I'm hoping that he will refer me to a surgeon quickly. This is not living.

I appreciate each of you and look forward to getting to know you.
Posted 2/20/2010 5:54 PM (GMT 0)
Hi All,

 

Lizzie, I just got on thenet to catch up.  Glad to hear the pouch is still working; still praying for the healing of ALL your complications.  Cruise is still good but I'm catching some throat, cough thing just prior to arriving in Rio which I really want to see.  Danced so much and stayed up so late while the fun dance partner was on board I wore myself down, BUT was WORTH IT!  WE ALL deserve LOTS of fun!

 

Tracy, miss talking with you.

 

Butterfly, things are sounding good for you.  Best wishes.  I'm in hopes your "normal"ileo will work just fine.

 

Sorry no time to read of all the new posters, but I welcome you all.  I gotta get another 13 hours of sleep tonight, change bag in the a.m. and be ready for Rio the day after.  It is sooooooo hot and humid around the equator that it is really hard to tolerate on side trips not having the use of my colon to draw water back into my body.  Easy to dehydrate.  Amazon River cruise will be a challenge as well.  Oh, well, off to rest.  I'll take some cough med and get a LOT of sleep.

 

Rosemary

Posted 2/20/2010 7:18 PM (GMT 0)
Valda, I am glad to meet you. There are not many that have to disimpact like we do. It is so embarassing to talk about, but, on here we talk openly about everything and nobody judges anybody. This forum has been a GOD send for me.

Have you had all the tests ran? You need to have many tests before making a surgical decision. The sitz marker test is a great start. Just be sure not to take any laxatives, use any suppositories, or manually disimpact your rectum. You want the test to accurately tell the doctor what is up with the colon. See, even if you don't poop, the colon should use peristalosis to push the markers toward the rectum. This is how I was dx with colonic inertia. On day 5, 15 of the markers were in the ascending colon and the rest were in the transverse colon. This indicates a severe form of slow transit constipation.

But the outlet problem is a completely different issue. It has absolutely nothing to do with colonic inertia....and there is no "cure" for it either. I had a botox injection directly into the puborectalis muscle, but, it did not help. I am going to try biofeedback for 5 sessions in the next couple of months.

I have had a colonoscopy, defecogram, anal ultrasound, anal manometry, electromyography, ct scan, and one more test I forgot what it was. I haven't got the result of all the tests yet, but the ones that I have had all indicate a rectum that is unable to expel anything...water, semi-solid, solid, even a simple fart is almost impossible.

ARE YOU LIKE THIS?

I am planning to have my colon and rectum removed and have an internal ileostomy placed if the biofeedback doesn't work. It is the BCIR! You can look it up at bcir.com

I am at the end of my rope with this. Having a bowel movement is a nightmare and we all have to poop.
Posted 2/20/2010 7:20 PM (GMT 0)
Welcome hischildvalda!! Hope I spelled that right. You sound like many of us here. There are a ton of great ladies on here that can help you with anything and talk about anything you need. I had my total colectomy in June and feel so much better than I ever have. It is a major surgery, but it will change your life. My sitz marker was the test that sent me to surgery. All markers were still there after 7 days. Most in my accending and transverse colon. So the best option was to get the entire colon out and hook up the small intestine to the rectum. I wish you luck with all these tests and hope you can get an answer very soon. Keep us updated.
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