TOTAL COLECTOMY PART 20

hi far,

i'm glad you found us, but i would also strongly advise you to go back and read total colectomy parts 1-19, which has tons of information, and you'd be surprised on how encouraging is the information there. you will read about lots of women who had this surgery and had very successful outcomes and are able to finally have normal life again after years of NO life b/c of sever chronic constipation. so please, start reading those parts and start getting encouranged !!!!!

about your story, i don't understand something, you say he did a scope - found nothing abnormal and put you on the lax... well, did he do any other tests to you besides the scope? i mean, how/with which test did he diagnosed you have CI? 

did you have the zits marker test when you swollow a capsule with 24 tiny rings in it and every couple fo days you do x rays to see how far those rings progressed? did you have defecography test? manomantry?

you have to have these tests first in order to determine any kind of a functional prob. and in order to locate the exact prob.

and yeah, CI only gets worse in time and there's nothing we can do about it to change that. no matter how much we keep healthy diets and enough water intake and exercise - it doesn't change our prob., not even a slightest bit, b/c our colon is handicapped, and it's like.... imagine to yourself telling a handicapped man to put all kinds of ointments on his handicapped legs - it's not gonna move his legs - same thing with us, no matter which material (foods) we "rub" our colon with - it can't change the fact that there is a damage to the nerves in there and there's nothing we can do to change that.

i'm so sorry to read you're getting worse and you're suffering with so much pain and discomfort   . i can honestly tell you that docs. don't mind which lax' you use - as long as you can get relief. try a different lax', you have to swich them every now and then, b/c the colon tend to get used to them easily till they don't work anymore, but if you swich them every now and then, that way you can assure that the colon doen't get used to any of them too soon and keeping them effective.

well, i'm going through the same thing as you right now. i want to have a colectomy some time in the near future, b/c there's no other solution for me, and surgery is my ONLY chance to have normal life again.

you poor thing, you haven't had a bm since friday? that has to be painful. i really hope you find feleif soon with your painful bloating.

so please go back and read the older parts, which are VERY VERY encouraging and provide lots of information. you'll find that reading those girls posts is like reading about your own life...

i wish you well, and please don't disapeare on us and keep us posted on your progress as we will too.

i'm glad you found this site too   . i was very grateful when i found it and the information and knowlege i've gained about this surgery - the outcome, possible complications, life after surgery etc. from reading all the total colectomy parts is something NO doc. would EVER give me   . they don't make the effort to tell us about all of these details, and i can't stress enough how important this information is to know what to expect post op. what can be a better source of info. than talking to the ones who went through it themselves..., so this site is truly a treasure!!

the prep. failure can't be enough by no means whatsoever, b/c lots of things have to be checked, like: whether you have rectum prolapse, rectocele, entetocele, anismus, how slow exactly your colon is and where in the colon the markers get mostly stuck and more things that they can learn from these tests that i don't even know about - all this information has to be taken into  a very thorough consideration in order to help your doc. know exactly how to treat you.

you are just in the begining of the road, Tabitha, so take a deep breath and start walking to reach your goal of being healthy and living healthy and normal life - you deserve it.

Hi Tabitha....

Welcome. I am sorry for all that you are going through.  It brings back so many memories of before my surgery. I had a Total Colectomy on Jan 28 of last year. If you read abck I had quite a few complications, but never have regret the surgery. It helped tremendously and it gave me my life back. Although I am still surrently suffering from some new problems I believe the surgery is well worth it....not every case is like mine and there are a lot of successes. I am currently not going to the bathroom again, but it has nothing to do with my surgery....I have major issues with my rectum. I hope you find peace at this site. I think you should definately have some more tests ran besudes a scope. I had to colonoscopy's and they usually are normal with CI, I had a EGD, anal manometry, defecography, and two sitz marker tests. They also did a hoppla of blood work to rule out any other problems as well as manual exams. I did try biofeedback therpay for three months and was unlucky with that as well. I hope you get some answers sooner than later. Take care.....

Lizzie

Hodaya....I agree that the sitz marker test is the worst thing you could ever go though. I almost took myself to the ER during mine :( I hope you are well :)

Amanda-

I cannot believe your surgery is right around the corner!!!!! and it was so good to hear from you...we have all been worried. It makes me sad knowing how much you hate and despise your bag since its something that is in the back of my head that I may be facing later on if the botox does not work. I feel the same way when I thik about it, but I just wonder if it would be better than how I feel now.

This two months has probably been so long for you, but Monday is right around the corner. I have peace kowing that this time around it is going to be much easier for you. It will be so nice to be able to eat what you want and not carry around an appliance with you. I wish you the best and will be praying for you. Keep us updated.

Its funny about the weight loss....I have lost 24 and kept it off for almost a year. I too, gained 20 before my surgery. I am at 118 or I was last week, but I havent been eating much.....I had my repeat u/s for my cysts and the tech did not think she had the right person. She said she looked at my weight and then at me and thought there is no wayt his person weighs what her chart states from last year!!!! You do not need to lose anymore thought my dear....you looked wonderful in your pics and I could not imagine you any smaller:)

I am supposed to find out tomorrow if insurance will accept my appeal for the botox. I am worried I am starting to develop a partial blockage. I have extreme nausea and some pain  (not terrible) and I have had nothing but liquid fluid that is stool colored come out and I still have been eating subbstance. My belly is hard and its like I am only losing the fluid around the stool? I do not know where to go from here or what to do to get it to move through. I have taken triple my m of m dose today and only liquid.

Hope you have a wonderful weekend and best of luck on Monday!!!!

Lizzie

Hi Tabitha,

Welcome to the site!  CI is such a difficult thing to get through.  I used to take 4 capfuls of Miralax daily, 2 TBS. of Lactulose 4x's a day, & Amitiza 2x's a day, this allowed me to have pellet like BMs once every 2 weeks if I was lucky and them even this stopped working.  My prep for my colonoscopy stayed in my system for 10 days; it was after all of this that my dr said I needed the surgery.  I had no idea what he was even talking about at the time, but I went on-line and found this site and it really helped me.  I have since had my surgery and have NEVER felt better!  I went through a month of intensive testing, my drs are 3 hours away. My dr does the marker test with 50 markers & takes pictures everyday with a special machine that can trace them from your esphogus to your colon; 3 weeks after swallowing them I still had 15 in the beginning of my small intesine and several-he didn't bother counting due to me having a dropped colon, a twist in the ascending colon, and and area that was almost closed -and all those markers were still there even though I continued to take my normal miralax, lactulose & amitiza; they didn't want me to stop them after the deal with the colonoscopy prep. If you have any questions I'd be happy to answer if I can.  My surgery has been extremely successful, I had mine in July, I am still on a low-residue/fiber diet, this seems to work the best for me.  I wish you the very best, be persistant, life can be soooooo much better.  My prayers are with you.

Amanda- It's so good hearing from you!  Just want you to know you're in my prayers and I'll say an special prayer for you on Monday.

Lizzie-I am praying that your Botox is approved and you will get some relief.

Hodoya- Keep up the GREAT work encouraging others; you are a great asset to this site ! 

Blessings and peace to all of you,

Judy

hi all

Amanda - it's so great hearing from you! i was really excited reading that your doc. said everything looks great and you can move on with the reversal. of course having all these mixed feellings is only normal. i really hope everything goes great for you and you'll be able to start living life again.

i'm sorry though you haven't been well lately. what's the reason you still have so much pain? i mean, isn't two mons. enough time for the pain to disappear? or at list subside? is there a special reason why you still have this pain? i hope you feel better, and hang in there - you're getting closer to your goal!!!

i'm also taking into consideration that ending up with a bag can happen, and to tell you the truth i start crying everytime i think of it, cause i don't think i'll be able to handle this..... really.. i'm sorry i'm such a crying baby.... i have a storm of emotions in me with everything that is happening and everything that is going to happen in the future, but when i see that i start feeling down, i just start laughing at everything - i find it's the best way to help me cope with all of this..... .

so i hope you and your family enjoy the full happy house.... .

Thank all of you for the wonderful responses and the encouragement.  I think you are a great support group for others and I will be spending a lot of time here.

Since I posted on Wednesday, I have had an ironic twist of fate??!!!

I still had not had a BM after SEVERAL DAYS.....i woke up around 4:00 a.m. yesterday with pain in my left side that was unbearable, vomitting....and i mean "throwing up my toenails"....no diarrhea or anything from my bowels except the same trickles of brown water that i had been getting....so my husband took me to the emergency room.  The doctor examined me and said I had a bowel obstruction. Took me to x-ray.....no obstruction, he was puzzled so he set me up for a CT scan to check for an infection in my colon??? It came back and showed that i had inflammation in my stomach but nothing wrong with my colon except that i was full of "poo" (like i didn't know that already) in fact i told them that at the begining. The gave me morpine...and something to stop the vomitting and kept me all day then decided to send me home to be cleaned out.  I am to drink 4 liters of go-lytely....i started the first 2 liters yesterday.  Will finish it up today....all that i have passed so far is the brown water.....and not to be gross or anything but at times it is the consistency of watered down pudding........but.....nothing solid....i still have the pain in my back on the left side....and i don't feel relief yet.  I have "bowel sounds" that would wake a sleeping dog!!!!! holy cow......one would think that it would break loose and come on out any second but it hasn't .  Is this due to the inertia?? I am just grasping here!!! But, if it does not clean me out then my doctor should begin to think that i have a real problem here......

I am to see him again next week for the post ER follow up visit, so I guess we will talk about whether i got results or not.  My colonoscopy is not scheduled till jan 19th since his calender is so full.....i do'nt see how i can keep going like this if the miralax won't work any better than it has.......

Thank you for letting me vent...........and I am so appreciative for all the encouragement.  It is nice to know that as i make this new journey in my life....for better or worse.......i have people out there that understand what is going on...thank you thank you thank you.....tabitha

Hi KAP,

Just wanted you to know that when my GI did my testing & found that I had a severely dropped colon, I had chronic kidney pain as well as decreased kidney function for over a year.  My surgeon didn't know if the surgery would help but 2 mos after the surgery my kidney function levels were back to normal.  When my GI discovered all that was wrong, he said to me "I bet you have been to a gynecologist and a urologist."  I told him I had as well as a nephrologist.  He said that due to the placement of the colon it would have caused all kinds of discomfort and problems with my pelvic region and bladder.  So it is not unusual to have kidney pain especially if you haven't had a bm.  I wish you pain the very best, life can be better .

Judy

Thank you Heather,

I will be praying that your surgery goes well. 

This site has been so much help to me already just being able to talk to ones that relate to what is going in with my body.  I do not understand most of this, but being able to ask questions and just vent has given me some comfort.  I am so grateful that I stumbled onto this place.  You are all a wonderful group of people!!!!Tabitha