TOTAL COLECTOMY PART 23

Judy-

Hey there....SO sorry to hear what you are going through with your kidney and hopefully whatever they decide will work and hopefully you will find someone on that site to give you the courage and strngth you need instaed of telling you things just are not going to work. I wish you the best sweetie and always praying for you.

Marisa- I had that a couple of times after surgery and my surgeon said it was most likely an internal hemorhoid. I would still call to check it out. SO glad you are doing so well.

So, my weekend, pretty much sucked. I went over to my inlaws and ate a half a piece of chicken and some cooked pinapple off the pizza they were eating. I felt really sick a couple hours later and felt pain and incredibale nausea. I figured the pineapple I had eaten was probably given me a obstruction. I had very little to no output out of my bag from 3 pm to 10 pm and hardly any overnight. I woke up in the morning and a chinck of pineapple was just sitting just on top of my stoma. I freaked out and though "oh thank God it passed" well I was still having very bad nausea. I was also having new stoma pain and intense. I took off my bag to find my stoma was nearly three times its normal size. I called the on -call surgeon and he said to watch ot for a couple hours. It decreased a little, but five hours later I was still having nausea. I went into the ER as they suggested. By this time my stoma was slightly purple on the bottom and had white patch areas (not its notmal and was still double in size). They gave me vicodin and zofran and took an xray and the colorectal resident stuck his finger in my stoma ( I thought I was going to scream) and they said everything looked ok. It is still double its size and very painful today......not sure what to do.

Hodaya- How are you honey?

Amanda- I am worrried...what is going on???

Lizzie

Janie,

Thanks for the encouraging words, it's always comforting to know that everyone on here is so supportive and caring.  My dr called me today and talked to me for 15 min trying to ease my mind about the laser surgery.  He was very nice and kept trying to help  me understand why he's doing this instead of one of the other surgeries and I totally understand and want him to try the least invasive one but I really don't trust my body as far as something going wrong.

He understood where I was coming from about my work situation but he said that if this doesn't work then I'll most likely miss the first few weeks of school.  He even said the whole thing su##s but he would recommend it to his sister if it this situation was happening to her.  So now I'm very much on edge and can only hope and pray that this works.

Janie-are you feeling any better?  Have been keeping you in my prayers and hoping that the prune juice works.

Lizzie - I hope you are feeling better and that the pain has gone away.  You're always in my prayers.

Amanda- Hope you are doing okay - am very worried about you. 

Hodaya - How are you? I keep praying you will get some relief soon.

Tracy-Thank you for the prayers. The dr says that I was born with a narrow tube and that scar tissue formed inside; I've had 4 procedures where they have gone up the tube to remove stones & look around so that may have caused the scar tissue.

I will probably find out tomorrow when I go in the hospital again, then I'll let you all know.

Thank you for always being there. Love you all,

Judy

hey all

after fixing my computer, it was o.k for couple days then collapsed again. now i'm using my sister's, she and her kids are here for the summer and she brought her lap top.

anyway, i was reading the updates. i was so disappointed to hear about your dificulties, Janie. maybe you should have your anatomosis checked for narrowing. i hope it's only a set back and gets better soon. i'm thinking of you, honey.

thanks everyone for thinking of me. i'm just confused and... my drs have only bad things to say about the surgery, i hear only bad things on here lately, so i just get bad feelings about surgery, but..... i cant live like this anymore either...... so anywhere i turn it seems bad. so yeah, i must say i feel discouraged either way, whether i do this surgery or not.

on July 1st i'm going to consult with another specialist, the one who did his training at cleveland clinic. i don't know what can come out of it, our medical care doesn't even cover this dr and i'm paying out of pocket to see him. he's quit expensive  compared to other drs  on this field. he's a surgeon.

Lizzie, so sorry you're having such a hard time. as Janie said, it's just so unfair! you're always in my prayers.

Judy, you're in my prayers, i truly hope the laser works for you.

Inquiz, glad i could help some, keep us updated on your dr's visit.

well, the psych told me he had one girl with similar condition as me and he said that with medication (antidepressants) and sessions she managed to make it through w/o surgery. on this board, from the begining of it at 2005 up untill today, maybe 90% of the girls were given antidepressants and they didn't help any of the girls here, as for the dygestive system, so why should i be impressed that it helped one girl compared to the tens it didn't. anyway i'm curious to see her, so i'm gonna meet her on thusday and then i'm supposed to call the psych again and tell him what i decide.

i will ALWAYS love you all!!!

i'll keep you updated on that meeting on thursday.

Hodaya,

I'm glad to hear from you.  I know you're having such mixed feelings now, but please don't let my problems influence you.  While things aren't perfect for me, they are truly better than before surgery.  I've been drinking the coffee drinks and grape juice or prune juice, and that's kept me going.  I'm going a few times a day, a little at a time, but still way better than before.  I have an appt. in a few weeks with my surgeon and I'll have him check me then.  I had an appt. with the hemotologist about my blood clot today and he asked how often I was going....he said even if I only went every other day the surgery should be considered a success and not to worry too much if I'm going so often.  I stopped taking metamucil, so now things aren't very formed, but at least I don't feel like things are stuck.  That's today anyway...it seems to change every couple days!!!  I find it hard to believe doctors actually believe antidepressants dan solve the problems we all have, especially after tests indicate there are really physical issues!!

help4ci,

Sounds like you're doing great!  I was still in the hospital on day 8!!  I hope you continue to do well, and that the bm's keep coming!!  I was still going 15-20X  a day for about 8 weeks, and then they slowed down significantly.  I'm 3 months out, and only go a few times a day now and I need to take juice to keep me going.  I'll be anxious to see how things continue to go for you.  It's great being able to go, isn't it??

Hoping everyone is doing well.

Hugs, Janie

 

Marisa,

So glad the bleeding has stopped!  The incisional pain can last a loooooong time, don't be afraid to ask for more pain meds as it will lengthen your healing process if you are in pain.  I agree with the feeling greating about pooping part; I never minded going 20xs a day because my body felt so much better than when it was so backed up all the time.

I see a nutritionist who has me taking a variety of natural things, but I went to the local Health Food Store and asked for their best vitamin and that's what I take because many store brands are synthetic.  I also take 1/2 a packet of Emergen C a day and 1 tablespoon of SeaAloe. SeaAloe has 80 different vitamin and minerals, you can only order it on the internet.  It's pretty expensive but this is the first winter that I never had a cold, sinus infection or any illness what so ever and I work with 6 year olds everyday. (don't count my whole kidney and c diff stuff because that's something entirely different) Anyway, my PCP wanted to know what I was doing because I usually have to get antibiotics from him at least 3-4 times each winter so I told him and he said to keep it up; he said it must be working, this and having my colon finally taken out.

I hope this helps and thatyou continue to feel better.

Judy

Inquiz - I was a little nervous about going thru with the surgery too but now i am so happy i did it. I would definetly recomend it. As fo the weight i have lost 11 lbs from before the surgery and i lost 7 of that since i have been home. I was told i could lose anywhere from 25-40lbs. and honsetly i dont have that much to lose if i do lose that much i am going to look sickly but i am sure that there is somthing i can take to hopefully gain some. Yes my suregery was 5 hours and that was shorter then expected. My dr siad it could be up to 6-8 hours depending on how much scar tissue i had and how hard it is to unattach the colon but the good part is it felt like seconds to me it was my family that had to do the waiting :) Please keep me posted on your decision and what your dr says.

Jaine, yes it is wonderful to be able to go!!! it is something people take for granted and you dont realize it until you are unable to go. Did you have to get cut open? is that why you were in the hospital so long? im glad your doing so well too!

*?*?* Quick question for anyone who has already had surgery....does anyone have problems with hemroids now? when i have a BM obviouly it is liquid and sometimes i feel like presssure when i am done and it feels like something is there and i still have to get something out but i dont. does or did this happen to anyone else? i am going to talk to my dr about it on the 1st but just thought maybe one of you have gone through this too.

Kristin

Hello everyone....

Well my stoma is finally back to normal size and leaking :( Its either one or the other it seems. I had to order new supplies way before my scheduled time. I am changing my bag every two days. I still am weighing in at 102....stable, so that is good and I feel stronger since being back at work. I heard from CC about the testing. They just want me to see the pelvic floor specialist on July 16 and go from there. I also talked to Dr. Shore in St. Petersburg Florida and they are willing to do an over the phone consult after I go to Cleveland. He thinks I definately have options, but I do not want to get my hopes up. I have had AGAIN normal bowel movements (kinda loose) the last two mornings !!!!! What is going on????? I am so confused????? I want it to be good news, and hope, but i have had such bad luck and complications that I talk myself back into the negative :(

Hodaya- How you doing sweetpea? Antidepressants are not going to help you honey.....let me talk to this guy.....seriously. I love you and always thinking of you.

Judy- Good luck Monday sweetie.....praying for success. Do not worry about that 25 %....its all going to work out and you can get back to life.

Tracy- I hope the botox and biofeedback help you....I had no success and as you can tell ended up with a diverting loop ileostomy for now and maybe forever??? Praying for you.

Janie- So glad things are still going well. Is that UTI cleared up???? Always thinking of you. Hope you can get everything sorted out with the hematologist. Being a concology/hematology nurse I hope they do not have to put you on Lovenox or coumadin....they are such a pain and coumadin especially for keeping in a therapeutic level. You are in my prayers.

Marisa....So glad you are doing well sweetie....

Amanda- I am SOOOO worried, what is going on and where are you?

Love you all.

Lizzie

OMG OMG OMG....... girls, the psych gave his approval today sending me to surgery!! he's supposed to write his letter of conclusions and give it to the surgeon. he told me to call him in a few days and then he'll tell me i can make the appt to the surgeon. OMG.... i just cant process this is really happening!! i CAN'T!! i'm scared, worried and excited!!!!

what happened is this, i went to meet with that girl the psych said got over her inertia through meds and sessions and honestly, i couldn't be too impressed. she said she was suffering with this condition for 3 yrs and nothing helped and then someone recommended her about this psych and he gave her the meds, which didn't help, but the hypnosis he did to her changed her life. well, i'm suffering for 16 yrs and during these long yrs i did 3 different series's of hypnosis by different psychologists and it never changed anything for me. i told her that, and she said "but you didn't try it with THIS psych, so i told her o.k, i want a surgery date for August and till then i don't mind laying on the couch and have these sessions, if it helps then bye bye surgery. i called the psych after my meeting with her and told him the same. he said he's reffering me to the surgeon. he said there's no point doing any more sessions like these. this is scary!!!!!!!!!! it's really happening!!!!!

but with all the excitement, i still kinda feel lousy that my gi and psych are still against it and they're giving me the o.k, but they don't agree with this. they think it's not a good idea, they have a negative opinion about this surgery, so i'm going, but with bad feelings. the fact that they're not giving me their blessing is making me feel bad. their are not giving me the encouragement i need.

i'm still going to that dr with the cleveland clinic training. i'm gonna bring him all my medical file. i want to know his opinion on my chances to have good results. he's very experienced and knowlagable about this condition and can give me good advice. i'm seeing him on wednesday (July 1st). i have to say that mostly i feel SCARED rather than excited and it's obvioulsy as a result from all the bad things my gi and psych said about this surgery. they discouraged me quit a bit during these past couple of mons.

Lizzie, i'm glad your stoma is better and i'm also glad your drs are optimistic... maybe there's still hope for you honey, i'm praying that that really is the case. i just want you so much to be happy, love.

Judy, thank you so much for the support, it means so much. well, you can always check in to this thread and see my posts. it's great you feel confident with you new kidney dr. thinking of you and praying the sugery goes as best as possible, hon!!

i'm worried about Amanda too.. havn't heard from her in a while. i sure hope everything's well with her. i can't wait for her to check in soon.

Janie, i hope and pray you keep getting better, maybe it's a little setback, but things will improve. i bet there are ups and downs after this surgery, so it could be only temporary.

Marisa and Kristin, i'm glad you're both doing good!

Inqiuz, maybe we'll both have surgery about the same time, wouldn't that be great? i can't wait to hear about your dr's appt.

Tracy, how are you doing, girl? what's the next step for you?

hope you're all well, love you.

Hodaya,

I'm sooooooo happy for you!!!!!! That's the best news!  It's okay to be scared, this is a big step and it's something that's going to change your life - for the BETTER!!!!!!!! Don't worry about how your psych and GI feel, this is NOT about them; they do not have to live with this day after day and until you've live with CI you have no idea what some one goes through.

Let us know when your date is so we can continue to support you as you have supported all of us. 

Love you,

Judy

Janie, I just read your post and I am like that also. LOTS of meds make me constipated, even if a side effect is diarrhea. Can you take miralax?

No, I have not had surgery yet. I have had a hysterectomy, 2 pelvic prolapse surgeries, and my anal spincter muscle clipped twice. None of this helped me with bowel movements, only made it worse, almost unbearable actually. GRRRR I have colonic inertia. On day 5 of the transit marker test, 15 rings were still in the ascending colon, and about 10 were in the transverse colon. I also have pelvic floor dysfunction. I have anismus, which is also called outlet obstruction defecation syndrome. I can't push the poop out, even with hours of straining. The muscle will not relax enough to allow the stool to come out. This is why I am not a candidate for the total colectomy. My doctor said I will still be unable to get the stool out because of the anismus. 100% of my bowel movements are manually assisted by me using suppositories, enemas, and disimpacting myself. I can't fart most of the time either. It is hard for me to even expel water from the enema. And I am so frustrated!!!!! So, I am going to try a botox injection directly into the muscle to see if this will help. I have about a 25% chance of it helping. And if this doesn't help, then I am going to do something totally extreme....I am going to have a temporary illestomy because my doctor said this sometimes helps the muscle to relax and rest. I am getting desperate. I spend 3 to 6 hours a day on the toilet and I have 4 kids and a husband and a job driving a school bus. I am tired of it. I also feel sluggish alot of the time and spend most days bloated. I can sometimes look 6 months pregnant. My doctor said there is no easy fix for this.

Oh my goodness, I feel so sorry for you. That feeling of needing to go and not being able to is horrible. Because of my pelvic floor problems, I have that sometimes, too. I'm just 3 1/2 months out from total colectomy for colon inertia, and I'm doing ok....was doing great for awhile, having a few issues now but hoping it will get better. If not, I honestly think I'd rather deal with a bag than deal with constipation all the time. It's just horrible.

I hope the botox works! Keep us posted. Does the botox shot hurt? Sounds painful to me!!

Janie

I think even if the botox works that it is just a temporary fix. I will have the shot in a surgery center under sedation. I know an illestomy is probably in my future, but I keep praying a miracle happens. I bet if this was a "man's" disease that they would already have a cure for it. LOL

I wonder why I keep having to take more and more miralax to get it to work? It is driving me nuts because I think I have it just right, then it doesn't work anymore. I just refuse to take exlax, dulcolax, or correctol because it cramps my stomach sooooo bad and makes me nauseas. And I took philips of magnesia for so long that I can gag at just the smell. What do ya'll take?