TOTAL COLECTOMY PART 24

Hodaya I didn't have the defecography because I have no signs of pelvic floor dysfunction. Now I don't know if he will say something different on Thursday based on my latest marker test. I have never had problems pushing it out, just never get the urge unless I take a lot of stimulant laxatives. Once they kick in there is no problem.

I will have to go back and read from the beginning I had just gone in and clicked on section and started reading the posts and started freaking out. I am so nervous that I read one thing and think not so bad then I read another that is negative and my mind starts racing again. I am glad that most things you have read have been positive.

Jen

Jen, I feel the exact way. One morning I wake and I am like, enough, I just need to get a temporary illestomy so that I can actually poop. Then, the very next day I think, no, I just need to live like I am now because maybe another surgery will only make my situation worse. But, I know I am going to have to do something because my problem has gotten so out of hand, that I am having a hard time controlling it. I probably won't have a total colectomy though...and this is because I can't push down to poop. I will get an illestomy and bypass the colon altogether. This is my next step. My doctor said this is what we will do next. I may try biofeedback 1st, atleast get evaluated to see if this could possibly help me. But, I think I am dreaming on this too. I don't like making these decisions because it is not like it is cancer and has to be done.

Thanks for everyone's input it really helps me to deal with this situation knowing there are others who are experiencing the same thing that I can talk to. Hodaya I am like you, I will be wondering if I have made the right decision down to the last minute. I have had dreams that I started screaming on the operating table at the last minute telling them that I have changed my mind. I think about this all the time constantly questioning myself. I really feel that the right decision will be to have the surgery because I am tired of living like this. Today around 4:00 I took a handful of Pericolace Stimulant laxatives hoping that by tomorrow they will have kicked in. It is terrible to have to plan a day of "pooping." I have an office day(which is home for me) so that is my day this week. The bloating and cramping will probably keep me up most of the night, it is no way to live.

I am sorry that the most of you have the pelvic floor problems. I can't imagine what that would be like with the colonic inertia. Janie I am sorry you are having so many problems, hopefully things will get better with time. I understand how it affects your social life, my husband is also very understanding but I am sure he is tired of it also.

Tracie I hope you can get some answers to help make your decision about what is best. Like Hodaya said just think positive and keep the faith that is what I am trying to do.

By the way I had posted earlier about also having gastroparesis, do any of you know anyone who has had a total colectomy and have gastroparesis also. I can't really find much information about this. I plan to talk to the surgeon about it Thursday but just wondering if anyone on here has dealt with it.

Jen

Janie,

There are still times when I don't feel completely empty but I will take that any day compared to the life I had before.  Remember that your surgery wasn't that long ago and it can take up to a year for your body adjust and get to a "new" normal.  Also, remember when Lizzie used to say that sometimes she just wished she would have a bag because it would be easier than what she was going through...then she ended up with one and it was the worst time of her life.  Don't start wishing for a bag, see if you can work with a nutritionist or if you have a kinesiologist in your area who might be able to help you.  My life isn't always perfect in the poo department now either, as I experimented with skinless hotdogs this past week and was bound up; but I take the bad with the good and am thankful that I can poop at all.

I'm not trying to lecture you but I just don't want you to give up, you've been through the hard part now it's just getting things fine tuned so that everything works well. I just hope and pray that things will work out for you and all of the others that continue to have problems following surgery.

Everyday is a journery and we are all in this together to comfort and support one another.

Miss you Amanda!

Hugs and love to you all,

Judy   

Janie, I think you need to wait for a year also before you can say the surgery hasn't been a success for you. After my sacralcolopopexy, I had such pain and it lasted for over a year. Then I started to notice the painful days were less and less and now I am pain free...BUT, it took about 18 months. I know what you are saying about having that pressure in your rectum. It is horrible and the pressure pain in my rectum can almost be more than I can bare. Today I had such pain and pressure in my rectum that I wanted to call my doctor and demand that he do something RIGHT NOW! I laid down and finally went to sleep. UGH It is awful. And no tylenol, motrin, or even morphin will touch pressure pain. Is this what you are talking about? Pressure pain?

Hodaya, intussesseption is not a rectecele, it is like the rectum slides into itself and essentially causes the rectum to be blocked. I really don't understand it myself, but I know it can cause major issues.

Jen, I used to be able to schedule poop days, but the past few years I can't do that anymore because it can take 3 days to 2 weeks for the laxative to take effect. I now try to take miralax everyday or every other day and just try to go several times a day. Oh, it is so time consuming. But I have had issues getting things started as of lately because I didn't take enough miralax one day.

Hodaya, yeah, that is it, but I am so confused about what is what anymore. Why can't I have normal problems, ya know? I already had surgery for a cystecele, rectocele, and a falling uterus, whatever that is called, TWICE! My pelvic floor is almost perfect now. A tiny bit of pelvic descent, but nothing that would be causing me these problems. Can you push down? Because I can't! I can do great kegels though, so I am just wondering why I can't push down? I am writing down all my questions to ask my doctor when i go back to see him. I am also going to call that Dr. Lahr and see if he has any ideas.

Hodaya, yes, I have that problem too. On my anal manometry test, my doctor said my first sensation was way too high...like when normal people feel the rectum has something in it at like 40, I didn't even notice anything until 150...Matter of fact, all my sensations were abnormal...he said atleast 50% more than most people. What this means, I have no idea. I know I can feel gas when it gets to the rectum though and I hate it because most of the time can't pass the gas. It is good that you can push down. I think I am alone in this, not being able to push down. I haven't talked to anybody that has this except one other lady and she had to get an emergency illestomy due to small bowel blockage from a botched surgery. My new colorectal doctor hasn't done a manual examination though. He only reviewed all my tests. But I guess he could of done a manual exam before he did the botox injections, but I don't know.

That is funny that you say that all problems are not normal...because that is so true. Because when I had my pelvic prolapse, my bladder was hanging down into the vaginal opening, I thought I was going to die because I have never heard of this happening. It just seems like I get issues that are rare and taboo to talk about.

My mother said why did you tell your kids you were getting a shot in your butt? I said, mom, they know I can't poop...they always come find me in the bathroom 90% of the time and know something is wrong with me. She never talked about anything with me. I talk to my kids and want them to come to me if they have problems. My kids talk to me about all kinds of stuff and I like it better that way. The old school way of hiding things is not something I agree with. Besides, it is sad when a woman thinks she is dying from a pelvic prolapse because it is something that people don't talk about.

Well, I am rambling as usual. Thanks for posting back. it means alot that I am not alone in this. Tracy

Tracy,
i think being open with your kids is the best thing. i think it's great for your relationship with them, cuase by being open and honest about everything, it builds a relationship that is based on truth, honesty and trust, and that's the most important thing in a family. also, children can understand a LOT more than some ppl think and it's good that they know and aware of what's going on, it makes them more mature. hiding things is definitly the wrong way to go and it can only create an unpleasant distant environment among the members of the family.

when my probs started when i was 20, at first i was very embarrased about it and it was VERY hard for me to tell anyone, cause like you, i've never heard of anything like this or ANYONE talk about issues like those i had, my condition seemed SO weird to me and i kept thinking like maybe i'm just some kind of a freak....

so yes, i agree, it IS sad, and you'll be surprised to know that there are lots of ppl (women actually) going through these issues, but they don't talk much about it cause they are embarrased. you know how i know that? it's b/c i talk to as much ppl as i can and by me opening up to them, i find quite a lot that feel comfortable to open up to me and i'm amazed to know that there are a lot of ppl just living like this b/c they're too embarrased to tell their drs about it. crazy huh..? well i was just like them at the begining. i try to explain to them how our system works, and try to arouse their awareness about this subject, so that they would start seeking help.

Jen,
there are no treatments for CI, but it depends on how sever it is. i've heard of women and talked to women that have the exact same symptoms as mine and sometimes even worse, but they're just living with it thourgh laxatives, colon hyro therapies, working with a nutritionist, or simply not going to the bathroom for 2-3 weeks and dealing with the discomfort and pain, not to mention the gas!!! some of them manage quite alright, but others are in agony and their lives are living hell.

there's no solution for CI, but only if you're willing, to just learn to live with it. it's highly unlikely it'll kill you, but living like this is not exactly living. i don't feel like i'm alive at all, i feel SOOOOO dead inside, cause for yrs i'm spending my days like 5-6 hrs in the morning working on having a freaking bm and i can't leave the house, the other half of the day i'm at work. i hardly find time for personal errands. i'm in a lot of pain and discomfort most of the time and i'm socially isolated. i've talked to some who seem to be able to manage this better than me, and then again, met some that don't even leave the house AT ALL and live on social security as they are considered uncapable...!!!!

i think a second opinion can never hurt. not that they can have a magic solution for this condition, but as to what exactly should be done, how exactly should the surgery be done, what do they think of your gastroparasis etc. it wouldn't hurt. i'm not talking about a whole yr of testing, but to bring them the results of the tests you already had and just hear what they think.

WOW sorry... i didn't mean to write so much lol.

Jen, I have seen 2 gastro docs, a urogynecologist, an internist, and 2 colorectal docs and I still may get myself another opinion. LOL Now, I have been suffering from the colonic inertia my entire life, but the anismus, inability to push the stool out, for 4 years. 2005 and 2006 I was bouncing from doctor to doctor because they only did a colonoscopy and ct scan and those tests were normal so they said I was normal and didn't have a problem. It has been 2007 to present that I had the defecogram, anal manometry test, and transit marker test when things started to get interesting. None of the doctors agree on a treatment for me...

I know with colonic inertia, there is no cure. They have 2 meds that were supposed to help with the peristolis of the colon...zelnorm, which has been recalled, and now amitiza(sp?). I have tried both and they didn't help me, not to mention the side effects. UGH The only proven treatment for colonic inertia is total colectomy. Like I said before, my doctor said it is much easier to control diarrhea than constipation.


Now, if I ONLY had colonic inertia, I would have the total colectomy. Living like this is the pits and it can't be healthy for us to take all the laxatives that we take.

Janie, maybe the metamucil will work. I know it is discouraging for you to have to take something, but hopefully it will work and bring you some relief.

Hodaya, I just hope I can get this problem taken care of so that I can have some fun with my kids and my husband. This takes too much of my time and makes me homebound and I am tired of it. I want to go to the lake with my kids, ride in a boat, ya know, just have some fun. I don't want my kids to remember me in the bathroom their entire childhoods. LOL

Lizzie, how are you? Will I hate myself if I get an illestomy? Is it that bad? I may not have a choice but to have an illestomy since the botox didn't work for me. I am running out of options and nowhere to turn.

TDR,

Any results from Botox yet, am posting night of the 21st. WIll keep my fingers crossed. Sincerely, esoR

Hi my loves....

wow, its so hard for me to catch up on everyone lately, there are so many new people and so many new stories. So sorry I have not been around more. Adams grandma passed on Friday and I did not get home till laste vening last night and my last couple days has been a mess...

Tracy- I feel your discouragement. When I went through basically three months of biofeedback and then botox with no result I was petrified, mortified, and very discouraged. I was diagnosed with anismus from my PT and with second opinion from University of Michigan specialist. I could not accept the words I was hearing and got a third, which led to a fourth opinion at Cleveland Clinic (both my 3rd and fourth were there). I know you said you have Cleveland Clinic in Florida, right....I just hope they have a colorectal/pelvic floor specialist...like Dr. Zutshi that I was able to see. After my appt. with Dr. Remzi, first, I had no confidence in what I was facing and I felt my future had been determined. It still may be....life with my bag, but I have had more hope since my return to Cleveland, but I will not feel complete until I have a suregery date. I had no ability to push down the stool, no ability to relax muscles, every rectal exa I had was abnormal.....etc. It was not until I had the emergecy ileodtomy that I started noticing changes and it was not right away. I only noticed them the day before my first Cleveland appt and even then I was not having urges....now I get them all the time. I have had them all day....I have not gone, but I have an ileostomy as well. I cannot lie to you, becuase of who I am....I do not like my ileostomy....it has been hell, but again, I have and always have more complications than the norm. People definately can live with it, but its an adjustment. I have had a horrible weekend with it and personally could not imagine a whole life with it, but I would o it If I had to. Its something I never would wish upon someone else, but it has brought back feeling in my rectum and movement in my muscles I never thought would be there, EVER!!!

Hodaya- Sweets.....hope to hear some good news from you soon....I love and miss your sweet words. I hope that you can start your journey in a new life and recovery from this horrible disease. You all have been a blessing to me, and still are....words cannot express how much you have gotten me though and how much I truly care for each and evryone of you.

Janie- Please do not lose faith sweetie....your still having BM's. I was having none with mass amount of laxative use. I as well did good for 3 months, but it was a year and three months before I was is desparity and in the OR again. I was sick, looked sick, felt horrible and again looked like death. I was grey....thin and had huge circles under my eyes. I could not get stool out no matter how much I took. I would be nervous if I were you too...its a scary feeling dropping off the number of movements and feeling that pressure and fullness again. I hope that they can figure out what is going on with you....what does your doctoe think and what is the plans for testing....if they are going to do any??? I am praying for you and feel your anxiety and pain....I wish I could take it away.

Judy- Thanks for your womderful positive words as always.....of course life in the potty (loo) is not always picture perfect and I wish it were. Its your positivity and sweet words that get so many of us through the day....your amazing and I thank you so much for what you have done for me.

Jen- I wish you the best in your appt Thurs and in your future decisions. I know it would take a LONG time to read my history. I have been on here sice 07 and am two surgeries in and have had many complications, but the important part IS.....I still do not and will never regret my total colectomy. I hope this can ease your mind and decision making somewhat....best wishes and ask and questions you have...

So a short and sweet synopsis to my week so far. Monday...funeral across state for Adams grandma (visitation Sun) and I changed my bag on Monday am before funeral (this was my extra). Got home from luncheon after funeral...leaking everywhere. Called and ostomy supplu store near by and went there and spent 0 dollars on supplies that were not mine, but tried to work with. These lasted two hours...leaks everywhere again. Adam was staying with family and I had to drive home....2.5 hrs later with a diaper coveringmy stoma and crying in pain I got home and removed diaper to find huge burn from acid in stool over 4 inches across and 3 inces vertical. My stoma disappeared into my body and I had to call my mo over becuase I could not even touch my skin. Called surgeon and they said it was a bad contact burn...use powder and see if I can get new bag on. My mom pushed my stoma out ( I was screaming and crying...this is my fourth try at new appliances). I got to work this am and 30 minutes into my shift I felt horrible burning ad had stool all down the from of me. Mortifying, I went home, changes bag and could barely touch skin again. My new bag was put back on this am and is holding tight...BUT worst burns ever....life with a leaky bag....AWESOME!!!!

Anyways...I have over-rambled.

Lizzie

i just wanted to add that i truly cannot understand WHY a good, sweet, loving and caring person like yourself, Lizzie, should suffer like this..?? it just seems so unfair.

Lizzie I am so sorry all this is happening to you. I can only imagine what you are going through. I hope your surgeon can help you. It seems like somebody else shoud be able to help since he is on vacation. I will keep you in my prayers.

Jen