TOTAL COLECTOMY PART 27

Jen Glad you did not end up getting sick! Praying that all goes well with you surgery!!!! Hope your husband can keep us up to date!

Jenise You had asked how they determined that I had anismus. I had a manometry test done at the Mayo Clinic. They insert a balloon into your rectum and the you are to try and expel it. I could not. They then start to slowly add weights to the balloon and after each weight is added you are to try and expel the balloon again. They added the maximum number of weights and all I did was scream in pain. It would not come out!!

Janie I too suffer the horrible pressure and pain after stool moves into the rectum after eating. I desperately need to evacuate because the pain can be extremely severe. That is why when I need to go out, I don't eat before or while I'm out incase this should happen!

Judy Again so sorry for all the problems the superindendent is causing you! You sound like a very dedicated teacher. The system may not appreciate all that you do but your students do!! You need to remember that!! I sure pray that this is resolved quickly. You do not deserve to be treated like this!!

Pelztier86 Thanks for the information on the tube. I suffer from anismus like Tracy. I'm going to look into this! Anything that will help the evacuation process!!!

Rosemary I can't believe what those doctors put you through!!! I was perfectly healthy too, until a doctor told me that I needed surgery for a thrombosed hemmeroid. He was just a general surgeon at a small town hospital near where I live. I went to the emergency because I had severe pain in my rectum. This doctor admitted me and I had surgery. I was in the hospital for 3 days. After I came out I was never able to have a bowel movement again!! I later learned that for a thrombosed hemmeroid you do not do surgery. You simply lance the thrombrosed hemmeroid (which is basically like a blood blister). Although I have since been diagnosed with Anismus, I still feel that the cause of all my rectal issues was this unneccessary surgery. I sometimes wonder like Tracy does, if there is nerve damage!!??

Tracy (& Jenise) I was unable to fart too, before I went to the Mayo Clinic for the balloon therapy. I used to have to insert my finger in my rectum and release the gas! Since the Mayo, I can now at least fart! What I don't understand is that if I'm able to feel the fart and push it out, why can't I push out stool, especially if it is liguid????? I'm looking into possibly being able to use that tube to assist as well. Let me know if you get it and if it works. I'll let you now as well, if I get it and how it works for me. I have a doctors appointment on Wednesday. I'm going to ask him about it! Again, just a reminder I emailed you! Hoping to hear from you! Take care!

Conmarjo So glad the blood clot dissolved! I'm so happy for you! Let's hope the pooping continues!!! It would sure be nice to have some good news around here!!

Lizzie I'm so sorry you are suffering so much. You are in my prayers!!! It may be a good idea to get something for the anxiety! Emotionally, you need your strength with all that you are dealing with physically. But again remember what I said about a vitamin B deficiency. My girlfriend had it and she could not believe that that is what was causing here severe depression!

Marrissa as always you and your mom are in my prayers!

Good night all! And God bless!!

Janice

Post Edited (F1ghter) : 10/25/2009 9:58:26 PM (GMT-6)

Thanks everyone.....going to the doctor today. Been in the ER the last two nights. I have a horrible virus on top of everything else. Going to get the labs drawn and trying to get some help. I have had the worst two days ever.

Praying for you Jen and everyone else......

Lizzie

Rosemary, sounds like some of your doctors may have rushed and not checked out everything. I’ve never heard of a sigmoidocele causing you to have frequent BM’s.. and certainly not a rectocele. I wonder what the real issue was… In any event, I can tell that it changed your life. It is NOT uncommon for gyn’s to want to remove your ovaries for the “cancer” reason. I too was told that, but went and looked for another opinion, got it and moved on to a new doctor and I have my ovaries intact. (they were/are perfectly healthy – no issues at all) I think the important thing for us all to remember, is that we, ourselves, have to be proactive in our own care, and that means obtaining reports and records of everything you can and question things that you don’t understand or that concern you. I was ready to just let my regular gyn do my hysterectomy and repairs, but if I had – it would have been a BIG mistake in more ways then one. My sister pushed me into getting a second opinion and to ask for my records on all tests. I know I have started doing so, and because I questioned some things, it must have made my current doctors relook at my tests, therefore cancelling the scheduled surgical date. I also think we know our own bodies, and in our situation with our BM’s – it is hard for most women to comfortable communicate things, I know it is for me.

I also think we shouldn’t fear the medical community. Most are very concerned about the care of their patients, and go to school for many years to learn all they can, that being said – there are definitely good AND not so good doctors, and it’s important for us to really feel comfortable in who we choose. I really do feel confident since they are not just rushing into things, but really looking at everything. However – every surgical procedure – small and large is not without risk., and they are not guaranteed. We sign consents with even the smallest procedures because things don’t always turn out as they hoped or thoroughly expected. Thankfully, in the end you did find a doctor who you feel confident in and who gave you your life back – that’s a testimony that they do exist.

Janice, thanks for the info on how you were tested for anismus. They have never mentioned this test at all, so I assume they feel it is not an issue.

Lizzie, I can’t imagine having the flu onto of recovering from surgery. It’s no wonder you feel like crap! Hope they can give you something so you feel better and get on the road to recovery.

Jen (((HUGS))) I know this is going to be a tough time in the beginning. I hope you are able to bounce back quickly and will be able to update us how things are!

I am anxiously awaiting word from my doctor after he reviews my last test.. and really want to get my surgery done as soon as possible.. I hope it won’t be in Dec., too close to Christmas!

I have the GI flu.....my docotr was very nice.. I cried the entire time through my mask. I have never been this down so they put me on clonipine, cymbalta, and xana to see if I can get through this. He said the flu is just a horrible thing to have to deal with at the same time and this is why i have no appetite nor desire to eat or drink. I di my best today. Had some crackers and peanut butter, saltines, and few bites of ice cream. Believe it or not ( not sure if it was was from 2 L saline, but my weight was up from before surgery)....who knows. My friends do not understand me. No one does except my husband. Talking to someone is not going to help. I have fear for good reason and I just need to have time. Its not even been three weeks since surgery. I am homebound until i feel better. I cannot laugh, smile, or live right now....its so sad to me and i want to be there for all of you and i do not have the strength tight now. Love you.

Lizzie

Hello everyone,

Lizzie, hope you're feeling better today. I wouldn't fight using antidepressants right now; sounds like they could really benefit you. It's just been so much to take in between all the surgeries, ups and downs, and now the flu. Praying things get better for you soon, sweetie.

F1ghter,

You say you have the same rectal pressure? You know, there was a woman on here last year who didn't have colon inertia, but had rectal inertia and used to talk about how she always had a sore bottom, and couldn't eat much or she'd get this terrible pain. I didn't understand at the time because when I had a colon, it would hold all the stool for a long time, and it never got to my rectum. Now it seems like within 2 hours of eating, if I'm not able to go at least a little bit, I get the pain and pressure. It's horrible and worse than the bloating feeling when I had a colon. I'm not sure what I can/will do about it, I see my surgeon on Thursday for the results of the sitz marker test and defogram. I will be interested in seeing what he has to say. When I told him before how I don't eat much unless I'm home, he said he thought it sounded like I had an eating disorder, so I'm not expecting much from him. Hopefully he'll surprise me and have something constructive to say....even if it's that I need an ileostomy.

I'm sorry, I can't remember. Do you still have your colon? It sounds like you do. What do you use to help with the pressure and pain? I use an enema when I'm home and need to go somewhere and really miserable, or if I'm in for the night, I drink prune juice. Sometimes I need to do both. I hate this. I haven't tried MOM or Miralax yet, it may be better than prune juice. Prune juice seems to make me go on and on for hours; I'd love to find something that works well and gets it done in just a few trips to the bathroom!

Hope eveyone is having a good day,

Back to work....Jen, hope you're doing well!!!

Janie

Hi Marisa,

Wishing you and your mom peace. What a rough situation.

A rectocele is a pouching of the rectum into the vagina that poop can get caught in. Instead of coming straight down, the rectum "pockets" into the vagina and creates the dip poop gets stuck in.

Others... correct me if I'm wrong.... but this is my understanding of what a rectocele is. Hope this helps Marisa, Take care, Rosemary

Marisa,

I'm so happy to hear that your mom is improving. I hope you continue giving us positive updates on her!

I see my surgeon on Thursday and I'm really not looking forward to it. Since Rosemary and Hodaya explained what a rectocele is, I won't have to, but anyway,I have a small one. I saw the picture of it while I was trying to push the paste out in my test, and mine isn't very large. I was hoping it would be large and then I could just have it repaired and I'd be able to poop....I just won't know until Thursday. I'm afraid he's going to say either live with it or get an ileostomy. I don't think I can live like this forever, I'm pretty uncomfortable when I eat just a little and absolutely miserable if I eat a normal meal. I don't know for sure how accurate my sitz marker test will be because I drank prune juice the entire 6 days, but I do feel like the food moves, unfortunately just to my rectum and stops. The night I took the lomotil I felt great; the food didn't move through me and all evening and I had no pressure in my rectum. I felt fine....but then the next day and for 2 days afterwards I couldn't get things moving well at all.

Hodaya,

During the defogram, I wasn't able to expel all of the paste at all, I'd say about 1/2, but we'll see what the report shows. The first time (before surgery) I was able to get much more out than this time.

I agree about surgeons; I'm not through with mine, but I think he wants us to be through!! I definitely don't think surgeons in general want you hanging around after they "fix" you. As long as they have done their surgical job well, they're done. I'm sure there are those who aren't that way, in fact the surgeon who did my mastectomies was wonderful, but they aren't the norm from my experience. It will be interesting to see how my surgeon reacts Thursday when he sees me, the last time I saw him I was bawling like a baby. I REFUSE to cry regardless of what he says this time. I just wasn't prepared for what I felt like was an attack about my eating habits, and I was already feeling lousy about the way things have turned out since surgery. I'll be ready for him to be a jerk this time and I won't let him hurt my feelings no matter what. I am determined to leave his office with dignity! I still plan to pursue the Cleveland Clinic unless he totally woos me back!! LOL

Better get back to work, almost time to go home!!

Janie

Jenise,

Hope you hear something soon, too. It's very nerve wracking to sit around waiting. I'm nervous about what I'll hear on Thursday, but I'm prepared for him to say there's nothing more to do except an ileostomy.

Keep us posted, there's alot going on around here, huh?

Jen...hope you're doing well!!! Thinking of you:)

Janie

this is Jens husband, the surgery went very well she is in a lot of pain but it is getting better a little at a time.They did it by lapro. and have not used an ng tube. She has gotten up and walked the halls a few times which the getting up and down seems to be toture but it is helping her.She is of course concerned about the the time frame for the small bowel takes to wake up, the Dr says he would not expect it yet do any of you have any input I can pass along to her?
If any one has questions I will gladly answer any I can. I really don't know what info you would find helpful without you asking. I would like to thank you all for the support,comfort and information she has recieved from this forum, I love her more now than when we got married but lord knows I could not begin to help her with how to think this thing thru of how to deal with the chioces and lack therof involved in such a huge decision.
Thanks Doug

OOPS! I almost forgot to add my 2 cents about surgeons who don't care after surgery. The colorectal surgeon who removed my sigmoid (when afterwards it was discovered I didn't have a sigmoidocele in the first place) left me with my colon narrowed in to only 3 millimeters at the anastomosis. I was naturally unable to pass stool through that severe of a narrowing. He just said he would "Do nothing." (And he actually thought he'd get away with this.)

Rosemary

Hi, Doug thankyou so much for updating us on Jen. Great to hear she has been up and walking. That is what is going to help her heal. The bowels generally take three days or so to wake up. I was one of the lucky ones and did not have a problem with that. Give her our love!!

Well, my mom is really touch and go at this point. She is still breathing on her own, but she is still so sick. She said today that she does not know how much more she can take. I am ready to let her go if it comes to that. I can not stand to see her so miserable. She has not had any quality of live for five years now. Since she was diagnosed with luekemia. She hasnt been my "mom" since then. I am ok though.

Thanks for the explanations on the recto ly whatever it is. I just wonder if thats whats going on with me. I just get so little out it cant be all getting out. Does it just get stuck there and eventually come out? How is it diagnosed? I will be having a colonoscopy in a few weeks. Will it show up on that?

Got to go get my daughter.Love ya all

Hello all....

Marisa...i know its still touch and go, but I am praying so hard for you mom to fight this infection and it can happen!!! thinking and praying for you.

Doug- Send her our love...its takes a few days and if it is slow they may put in an NG, but with walking, walking, walking that is good:) Please tell her we love her and out praying for her. Her pain will ease, but its normal.

Janie- Curious about the defogram readind. When I had anismus I was unable to get any barium out at all "failure to empty rectal vault" but something is still going on. I have a small rectocele as well, but they said it would not cause my issues I was having. If this doctor does not treat you with respect then forget about him and move on to someone who does. My surgeon het to me when necessary though email and answers all my questions. Love you and thinking of you.

Jenise- Curious to see what they say......thinking of you always.

Hodaya- Miss u

Judy, Christy, Marisa, and everyone...thinking of you always.

I am in a real bad place right now. I was in ER twice over weeekend and now I am on clonipine, cymbalta, and xanax. I have no appetite and have a hard time getting fluids down, but unfortunately its nothing related to my surgery or they would most likely admit me. I made an appt with a counselor. After all of this I am having a hard time thinking its good forever and everyone cannot understand that.....its hard, its been 8 yrs of bad and 18 days of good....i am being cautious not pessimistic. I just do not know where to go from here. I will continue on meds and hope i find me again. Plus I have a fever again tonight of 100.....fun fun.

Lizzie

Hi Lizzie,

This is the first time I have posted here but I really feel you need some support. I had the same surgery in April '09 and I remember feeling really bad for a few months. But now, every day is getting better! I finally have my appetitie back, the trips to the bathroom are slowing down (and that's good). Please keep faith and I will pray for your recovery each day!

Sinda