Nice to meet you Mom2sophia!! First let me recommend you to the "thread" Total Colectomy here in the "Ostomie" forum - There are many parts to this and you will be able to see it when you look for it. Most of the people there had their TC due to constipation, yet a few there have had the TC for other things like UC, Crohns, etc.
For me personally I suffered with constipation my ENTIRE life, from the age of 15 months old up until I was 43. When I was a toddler I was hospitalized due to this and the only thing the doctors told my parents was "she will suffer with constipation her entire life" - nothing more or nothing less - and boy did that hold to be a true fact.
I've taken anything and everything you can possibly think of not to mention a combination of things. Way too many to sit and list.
My sitz marker test, if I recall, showed 22 of 24 markers after seven days. Surgery was my ONLY option to regain a life I never really new existed. Besides the sitz marker test I've had a defogram, which I was unable to "poop" the barium balloon out and an anal manomatry test that determined the nerves and muscles in my rectum were good in order to have the TC.
I hope this information helps!!
Thank you so much for replying Robin. My anorectal manometry was normal. My nerves are functioning normally, all except my tendency to "hold" back when I push to make a bowel movement, something I am working on right now to not do. My defacography showed a significant sized rectocele which I am seeing a gyno for soon to get it fixed. The doctors are hoping that if I get that fixed, that I will be able to move my bowels. I know this isn't going to help. I passed 3 markers of the 24 after 8 days. Most all of them were in the sigmoid. None of my doctors know what to make of this. I am extremely uncomfortable. Do you think this warrants having surgery?????
I would love to know others opinions. I talked to a few surgeons. One said he would gladly take it out, the other said if I can relieve myself with hot water bag enemas (it takes 3 mind you every 3 or 4 days) then to do that the rest of my life, the other surgeon says that fixing my rectocele will help me move my bowels.
Did you try eating a lot of fiber before having a TC? I seem to get worse when I eat fiber. Well, know, I can't even eat fiber because of gastroparesis...it is especially hard on the stomach to digest.
I certainly hope you don't have gastroparesis. If you have a "lazy" small intestine, that may not be a good sign. Johns Hopkins diagnosed me with "general dysmotility" from top to bottom. I have not had any studies on the small intestine however...the test you are talking about..is it the small bowel manometry...I think that might be it...there maybe one other test that shows small bowel motility though.
I have GERD as well. I have tried Reglan, erythromycin, and domperidone (not approved by FDA in US). I can't tolerate the Reglan, domperidone gave me chest pains, and e-mycin makes me feel nauseated and didn't really seem to help. I am down to 92 lbs. because I literally feel full all the time. Add constipation on top of that, and you can imagine how I feel.
I just tried Amitiza last week for constipation...didn't do anything but make me nauseated.
It so good to have encouragement on this board...I want a permanent fix for the constipation, not just another pill.
I have a friend who has gp and just had a TC. Her gp is getting better now. I did read that having a TC will most likely not make your symptoms worse or better if you have gp. Some feel better, some may feel worse, it depends on the person I guess.
Praying that everything is ok with you and you don't have gp. Keep me updated.
I am confused as well...EVERY doctor I have met says that general dysmotility is number one reason why you should NOT do surgery. But basically every person that I have asked or emailed and who has had this surgery, tells me how good they feel and how relieved they are that they took this big step. I cannot understand why there is this difference in opinions??
Dana...one hospital told me I have colonic inertia, the other told me I have a general dysmotility. I believe I do have colonic inertia, as I have suffered with constipation since around 14. I believe that my motility issues in my stomach (I don't know if the small intestine is effected) has to do with years of enemas and laxatives, as well as going long periods without eating.
Are you considering a TC?
Lindsay- I wish I would find a doctor who is willing to do surgery on me!!! But they all just don´t get it...or they tell me that it would actually make things worse in my stomach and/or small intestine. But I am actually scared of surgery as well because I am so compromised right now and a colectomy is a huge surgery.
Yes, I'm able to evacuate my bowels since surgery. My anal manomatry was considered good, however, for the life of me, during the defogram, it just wouldn't come out. I know this sounds gross but there were many times that I had to "manually" remove huge hard stool prior to surgery.
I've been home as my surgery was last November. Even though I've slowed down significantly (once a day or every other day) I'm still pleased with the surgery and thankful for it.
do you not remember me? I am the one from the GP yahoo group!
You have my private email address and emailed me a few times.
Andrea...hey...of course I remember you. I hope all is going well. Well, I found out I can't take domperidone due to severe chest pains. I need some relief here...I am getting sick of dealing with all my health issues. How are you doing?
Eerual....wow, your poor daughter. I am really interested to see what Mayo has to say. Please keep us updated, as this information might help others...including myself. Has she had a defogram or a Sitz Marker study done?
Lindsay, I can understand what you're going thru. I had rectocele surgery a year ago and it didn't help. Afterwards, I was very constipated and I could go for a month without having a bowel movement. I tried every laxative and faiber imaginable. None worked. about 6 warm water enemas would eventually work. You cannot live that way.
I saw a surgeon at Cleveland Clinic in Florida and he ran 8 days worth of tests. I had 23 of 24 markers left in my sitz test. I was diagnosed with constipation and colonic inertia. Two months later, August 8 this year, I just had a total colectomy and am still recovering. I return to work on Monday and am going to work part-time for two weeks. It is a huge surgery and there isn't very much information about it. Look up Dr. Wexner on the internet and you will also find much information. He is one of the world's best colorectal surgeons.
I am very happy that I had the chance to have my colectomy. At first I went to the bathroom a lot. Now, I average about 4 times a day and eventually I can eat anything that I want. Right now, I am staying on the bland side of foods, like baked potatoes, bagels, chicken, and egg rolls. Soda will blow you up, so no carbonation. Sweet tea has been my saviour.
After surgery, you will be very sore, and feel like you'll never get better. But guess what, you will and feel better and more healthy than ever. I have gone from a size 18 to 14 and am loving my new body. I had an open colectomy so it was a big incision and took awhile to heal, but it's almost closed now. I have to think about everything that I put in my mouth now, so I am really eating healthy and drinking loads of gatorade to keep my electrolytes up, especially while the weather is so hot.
I wish you lots of luck with whatever happens. Take care, and know that it's not the end of the world. I'd do it all over again in a heartbeat.
Lori....thank you so much for all the info. Wow, were do I start. What foods can you NOT tolerate now that you have had surgery and why (do you get diarrhea,etc)? What is a typical day of eating for you? Did you have a small bowel manometry before the TC?
Why did you stomach strink after surgery? I am a little concerned about this. I don't know if you read, but I have gastroparesis...the reason why I have lost so much weight. I have been struggling to gain it back...but I can't, because I simply can't eat much. I have to eat very small meals about 5 a day and chew them really good. Everything I eat needs to be nutritional in some way...water even fills me up...so I have to moderate that as well. The doctors are in the process of trying to get me Zelnorm because it is known to help the stomach empty faster (every other drug has failed so far...so this is the last resort...it didnt' help with the constipation...but maybe it will help with the gp). Do you think you lost weight because you watch what you eat now or because it runs right through you?
How formed are you bowel movements now? Are you scared that you will leak when you pass gas?
As far as a nurse, what is the best way about finding a good student? How much did you pay him/her? What sort of things did she help you with (other than wiping your behind and all that).
Lori I just want to thank you for all your advice and writing about your experience.
The gastric emptying test you had done with the eggs...that is the test that revealed I had gastroparesis. The eggs were still in my stomach and were not digesting at a normal rate.
Did your surgeon request that these tests be performed or your GI? Just curious.
Can you think of any questions I should ask the surgeon? I am calling tomorrow.
This may be a personal question, but did intercourse hurt while you had the rectocele? It is painful for me and I am wondering if that has something to do with it. I also have an enterocele--where the small intestines protude down behind the vagina...this also may be causing my pain. Do you think this could be fixed during the TC?
Hi Lindsay, the egg sandwhich test that I did was part of the 8 days of testing that my colorectal surgeon ordered for me before he could give me options available to me for the problems that I was having.
Let me say that different hospitals do give different advice. I had testing done also at Emory Hospital in Atlanta and they suggested that I have a colostomy. I wouldn't accept that and I saw Dr. Wexner at Cleveland Clinic in Florida. He had all of my testing redone and more for the 8 days. He is actually one of the number one surgeons in the world and also practices and teaches in many countries. He is one of the most caring and dedicated colorectal surgeons ever. I cannot say enough good things about him and the doctors that work with him. Only doctors run the tests for him; no techs, and everything is accurate. I saw doctors about 3 times a day while in the hospital and they were exceptional.
I had a rectocele and cystocele repaired a year ago August. Actually, I didn't even realize that I had them until I went to my gynocologist for my yearly exam and he said that I should have surgery to repair it. Stupid me. I had the surgery, and constipation from there on. I never had constipation problems prior to my gyno surgery. I guess that I was fortunate because intercourse never hurt me. This may be personal, too, but since my total colectomy surgery almost 2 months ago, my sexual relations with my husband have been so much better. I don't know if it was the surgery or what, but I'm loving it.
Please ask your surgeon alot of questions, especially with your stomach experiences. I believe that they do the egg test because your stomach has to be able to work so much harder with your small intestine. If it can't work you'll really have a difficult time. I was readmitted to the hospital the day after I was released, because my stomach wasn't ready to work without my colon. Your stomach makes bile, and unfortunately some patients have a really tough time with nausea and being able to eat at first. I was one. For an entire 10 hours in the emergency room I vomited green bile and could not stop my bowels. My mom and husband actually filled trash cans from me and it was horrible.
Ask the surgeon how your diet could be affected after surgery with your gastroparesis, and if your gastroparesis might go away if you had a total colectomy. Have you had much abdominal surgery before? I had my appendix out and a hysterectomy before, so when my surgeon tried to do lapro it didn't work and he had to switch to an open procedure. Ask you surgeon how many days does he expect you to be in the hospital. One of my biggest questions was will I have to have a nasogastric tube in during the hospital stay. You have one in during surgery, but some surgeons leave them in afterwards. My tube came out before I came back from surgery, but because of my not being able to keep anything down they almost put it back in because it suctions all of that stuff from the insides of you. I live about 9 hours from the hospital where I had surgery, so I had to stay another week in a hotel before my surgeon would allow me to travel. Arrange for extra help before surgery and try to have someone stay the entire time in the hospital with you if you can. (You will be so appreciative of this).
If you decide to have surgery, make sure that you buy some diapers; you'll like having them at first. Also, you might want some extra long pads for your panties. I try to wear my panties more, because I'm allergic to the elastic on the legs of the plastic diapers and I turn purple from it. I also was glad to have cream for my sore bottom for awhile. The constant bowel movements and bile will make you sore. For me, baby wipes were better to use than toilet paper and still are. They keep me from being so sore and less sensitive. They're worth it. Plus, if you have a little girl, you already have wipes around!
It's hard to know what to ask the doctor beforehand. I've heard that some doctors will take out your appendix at the same time as the tc if you want them too. It's hard to remember much more. I drink lots of gatorade because of the electrolytes and I don't want to be dehydrated. I've gotten an iron deficiency during all of this, so I take flinstone vitamins with iron, and yes they are for adults too but less harsh on the tummy.
Wish you the best,