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TOTAL COLECTOMY PART 22

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Posted 5/21/2009 1:40 AM (GMT 0)
Hey everybody, how are we all? I hope good! How is everyone feeling? Well, I have 10 days until my surgery. I am going to have a total open colectomy. I just hope I will wake up and feel intantly better. Of course there will be surgical pain, but I am hoping that my usual pain will be gone. Am I just dreaming? The weather in Idaho has been so gorgeous. And it really sucks that I cant go out and enjoy the things I usually do. I just bought a new dirtbike this year and havnt been on it once. This Saturday I am planning on taking it out so I can get a ride in before surgery. Just thought I would check in with everyone. I appreciate all of your comments and advice. Love you all!!!! Marisa
Posted 5/21/2009 1:56 AM (GMT 0)
Hi everyone,
How is everyone doing? Linda, Judy, Hodaya, Lizzie..what's going on? Lori, I responded to your post in the other thread, I'm so sorry you need more surgery.

I'm doing ok, but still go between diarrhea and having trouble going...much more diarrhea than not going though. I have a few good days, and then a few bad days, and I seem to basically eat the same things. I just can't figure this out. I do know for a fact though that CHILI is a big NO NO! I ate about 1/2 cup on Sunday, and I had the most horrible butt burn for 2 days. It's just now finally getting a little better, but I'm still sitting on pillows. I honestly felt like my butt was on fire!!! I ate spaghetti with no problem, but the chili almost killed me. Lesson learned. I'm trying metamucil once a day to try to firm things up a little, but I'm afraid it will clog me up. If I take even 1/4 lomotil, it seems to stop things up, but if I don't take anything, I have runny stools....in the morning they are a little formed, but starting afternoon, it's all liquid. I wish I knew how long this would last. I so miss going out to eat, and just being normal. I really thought by now I'd be a little more normal, but maybe I'm still rushing things? What do you all think? I'm still going about 15-20 times a day, mostly after dinner. If I don't stop eating by 6:00, I'm up during the night, too.

I'm going back to work June 8 and I'm nervous about it. I think I just won't eat during the day, but I know that will be difficult!

Oh well, sorry to complain. Tomorrow I'll be spending the day with my little 5 month old granddaughter, so it will be a good day whether I have
to run to the bathroom all day or not! I hope everyone else is doing well.

Janie
Posted 5/21/2009 2:00 AM (GMT 0)
Marissa,
I was typing as you were, so I didn't say hi to you. Good luck on your surgery. Are you having it for colon inertia? I had a hand assisted lap. surgery, so I'm not sure about the recovery for open. I had an 8 day hospital stay with no problems other than not being able to pee after the catheter came out. I had very little pain after the first few days (the drugs were wonderful!) and even when I got home I seldom took any drugs. Figuring out what to eat has been the hardest thing for me; seems like most food runs through me fast and for hours....but I'm still adjusting. Good Luck!!

Janie
Posted 5/21/2009 10:26 PM (GMT 0)
thanks Lori, but the prob is is this psych guy is trying to talk me out of surgery. i'm confused, i don't know what to think, or expect anymore.. i'll let you all know if something new happens.

Marisa..... good for you, girl!!!! i'm really thrilled for you and i wish you the best success w/ your surgery from the bottom of my heart, my dear.

about feeling instantly better when you wake up... mmmm well, maybe if you consentrate on that feeling hard enough, then you'll really get to feel it, just have to believe and be positive, ya know, mmm... you know, i'm talking about what they say how the mind can take over everything if we set it on the thing we want, even pain. maybe it's worth a try... o.k i'm rambling in the middle of the night (1 am over here now)

anyways, enjoy your bike ride this saturday!! love ya too!!

Janie, thanks for thinking of us all. gosh i hope you're not developing a fissure or somth like that.. but then again, if it was a fissure, there should be bright red blood and there's not, so maybe it's not that. are you seeing your surgeon any time soon? i strongly feel you should be checked soon!! dont wait too long w/ this, o.k? hope it's nothing serious.

gosh i wish i knew what to say to you about figuring out this whole thing, but i do think things will settle gradually. going back to work can be stressing, are you going for half a day at first? maybe that can help, at least in the beginning, if your boses are o.k w/ it. i truly wish you the best.

give that little one a kiss right in those cheeks for me. i just LOVE their cheeks!!

Lizzie, how was your birthday party? hope you had fun!! and i hope this time you get the best bday present that you ever got so far, maybe the life you've been looking for for so long, wish you the best and love you tons!!

Karen, i'm so sorry about your mom and dad and everything that's been going on w/ you. i'm really sad to hear this. i saw the picture of your mom on your profile and she really seems like a very nice woman. i really hope she gets better soon, you and you family are in my prayers.

i truly think that all of this stress you're going through affects your guts, Karen, i hope you can find a way to relax from all of this stress, you poor thing, it's all too much for you, esp during this time of surgery and recovering.. so unfair it has to happen now. i truly feel for you, i hope you feel better soon.

Linda, hope everything's o.k... how's your dad?

much love to y'all!!
Posted 5/22/2009 12:49 AM (GMT 0)

Hi guys, been trying to catch up.....not been doing so well. Weaning off all my meds....been having horrible nausea and panic attacks and back pain still. Saw my surgeon today and he thinks I need to see a psychiatrist.....he also added phenergan to my nausea meds as well as neurontin for my back. He is worried about my weight.....I am about 100 lbs....I lost 23 lbs since i lst saw him. I go to Cleveland in six days......excited and nervous......do not know what to think. I HATE my bag and I feel like I am losing myself in all of this. I have had a few breakdowns and crazy moments....i hate looking in the mirror and i feel i hate myself at times. I would never hurt myself.....so no worries.

I have been talking to Lori......

Marisa....wishing you all the best!!!

Hodaya...thanks for the birthday wishes....i miss and love you always!!!

Karen dear- you in my prayers daily....please know this!!!!

Janie......always thinking of you and praying for healing and answers to all of this.  wish I could help. Miss you all.....feel so empty.

Lizzie

Posted 5/22/2009 9:57 AM (GMT 0)
Lizzie, are you going to support meetings w/ ostomy fellows? i really think that actually meeting w/ ppl in the same situation can be very helpful, even more than talking to a professional, like a psychiatrist. it's important to talk to him too, but i think meeting w/ ppl w/ the same prob is much more helpful, open up to them, honey!! they are the ones that can understand and relate the most, they are the only ones that can really empathize and feel your pain and know how to comfort you.

honey, if you really want to help youself, then i think you should really start "grabing this bull by the horns" as they say, and start going to these meetings. it's very important that you go to these support meetings. i think that the more you spend time w/ ppl who deal w/ the same things you do, getting to know them, being involved w/ them, and learning from them how they manage to make life to go on even w/ all the obstacles that are in the way, the more it'll be easier for you to cope w/ this, they can give so much strength and mmm... it's hard sometimes to find the right words in english, it's much easier for me to express my self in hebrew (dahhh).

and they can also give you lots of practical and useful advice. i know i would definitly go to meetings like that if i had this condition.

so PLEASE honey, open up and give these ppl a chance to help you, o.k?

love you SO much and want you so much to be happy.. HUGS!!!!
Posted 5/24/2009 10:43 PM (GMT 0)
Yes, it is so true Lizzie, that being with others that have gone through the exact thing really helps your spirit. You may not get the answers you need, but knowing you are not alone is a tremendous relief. When my sister first got hers, she said the most help she got was from talking to someone who had been through it. I think everyone goes through a depression stage post surgery. I have no proof, just heard from others who have been through surgery and my own experiences. Don't let this run your life. I know it's so discouraging. When I was in the hospital much longer than expected with complications I got scared and so worried that my life was ruined. I questioned my decision to have the surgery. But I did so I had to deal with it. There was a hospital chapline that came to visit me on a bad day and she helped me so much. She visited with me 4-5 times and always made me feel better. I don't know how she knew, but she came at the times I needed her. I believe in God so I guess I do know how she knew. Feeling alone in this is so easy, so please talk to someone who's been through it.

Thank you everyone for asking about me. I don't know why I am not getting email reminders of updates to this site. I used to get them. I forget to check daily, I swear my brain is still half under anesthesia. I'm doing pretty good. Certainly better than pre-surgery. I still have an infection going on at the top of my incision, but now the skin has closed over it. I'll have to make a call to the dr. on Tuesday and see what he wants to do. My picc site is looking better too. Still red, but not near as sore and hard. So I'm thinking a threat of a blood clot is not there.

I tire out easily. Mornings are good and then I want to just go to sleep. I don't get much done either, but I don't really care at the moment. My stomach gets sore then too. But I remember my surgeon saying it would be a good 2 months before I felt like myself. It's only been 1 month and 4 days since the surgery. I just have to have patients. And not feel guilty for not pulling my weight around home. I haven't been walking like I should either. I think I'm supposed to keep doing that, but don't remember! My stools are on the loose side depending on what I eat. I worry so much when I haven't gone for half a day! On average I probably go 6 times a day. Luckily I can control it too. I have to stay on a low residue diet until I see my dr. on June 19th. I'm suppose to eat 5 small meals a day. It's so hard for me to come up with what to eat! Canned fruit, canned or steamed vegies, little dairy, no cheese, what rice and bread, no wheat flour, seeds, tender meats....supposed to stay under 10 grams of fiber each day. Do any of you have food ideas? I'm scared to eat much in the way  of bread and crackers since that's when I slow down going to the bathroom.

Thanks for asking about my dad too. He is doing well. Having some fluid build up in his lower abdomen, but was told it will reabsorb. I haven't been able to travel to see him yet-wish I could. I don't think I could last long enough in the car.

Someone mentioned that it seems many have the back pain after surgery. I even had a ct scan because was so severe. Found nothing wrong. My surgeon  thought it was muscular-skelatal (I have no idea how to spell it) perhaps from not sleeping, being in uncomfortable hospital beds in weird positions, changing to my own bed and walking differently just from surgery itself. I don't know, it's gone now and I am relieved!

I hope you all are able to enjoy the weekend-

Linda

 

Posted 5/24/2009 11:05 PM (GMT 0)

Could someone tell me how to receive notices in my email that a member has posted here?

I read the FAQ's and well, I'm not getting it. Brain isn't functioning! confused

Thanks,

Linda

Posted 5/25/2009 1:05 AM (GMT 0)
Hey linda it was great to here about your progress. I am so glad that you are feeling better. Did you have your surgery open or lap? I believe I will be having they exact same surgery on the 1st. I was wondering, do you feel the urge when you have a BM and do you have to run to the bathroom or do you have time to get there? I am very nervous about how my system will be after my recovery. I am a dental assistant and its not like I can just get up during a patient and get to the bathroom. I am taking six weeks off and I pray that I am somewhat normal by then.
Lizzie, I feel so sad for you. I can just feel your heart breaking. Its so hard to be positive when life is so miserable. I find myself slipping into those depressive cycles. But I have my kids that keep going. I hope your family will stop blaming you for having these problems. Like you want to live this way!! I do agree with everyone else that counseling and a support group would be great. My brother was murdered in 05 and counseling was the only thing that got me through that time in my life. I know that God only gives us the trials we can handle and I pray that you can get through this and find happiness in your life.
Hodaya, How are things with you? Any progress with the docs? If you have surgery what will they do? I wish you well.
I am getting very nervous for next Monday. Talking to everyone here has been encouraging but also hearing all the problems has been a bit scary. I just want to feel well again. I feel like this is great support group and a great group of new friends!!
Marisa
Posted 5/25/2009 3:11 AM (GMT 0)
Hi Marisa

I've always had time to get to the bathroom. I've had control until I could get there. I was very worried about that too. I had visions of liquid just coming out and me not able to control it. I had to share a hospital room and of course my bed was furthest away from the bathroom, but turns out my worrying was just a waste. Whenever I felt I needed to urinate I automatically had a bm and then it was liquid. I kind of watched the clock too and would try if I had the opportunity. I've slowed down now and firming up in consistency, depending on what I'm eating. Will you have an option for an epidural? I had one and it made a big difference in pain control so I could get up and walk more often which will get your gut waking up sooner. Even with my complication of a blockage from eating jello too soon, it added a week or so more time in the hospital I would be able to go to work in 6 wks. Believe me, I am no super fast healer either. The first week I felt horrible, but still each day was better and I am so happy to have done the surgery. Even with the complications you read about, there is pain meds so use them, walk, walk, walk and you will heal. I am horrible with remember who wrote what but one on here wrote about her story and it went beautifully. It was pretty recent if you look back a page or two. You may be just like her. We all heal differently. I'm praying for you for peace as your date comes closer. You are doing the right thing, because you need start enjoying life and it's not going to get better on it's own. I figured I didn't want to be like I was or worse in 10-20 yrs from now and that's what my future looked like. Hang in there. Keep writing!

Linda

Posted 5/25/2009 5:33 AM (GMT 0)
Linda,
i'm glad to hear you're getting better! it's also very encouraging for me to know you're happy you did it, cause i still need as much peace of mind as possible with this decision - one can never get enough of hearing about possitive stories.
is your dad still in the hosp or is he recovering at home now? i'm sure you want to see him, you'll be able to soon, hopefully. did he have an emergency surgery? i hope he gets better soon.

why cant you eat wheat? did you try it and it bothered you?

Marisa,
i was so sorry to hear about your brother.. it must have been so hard to you and your family. how old was he? and how did it happen? i hope it's o.k i'm asking. i understand if you don't feel like talking about it.

i don't have any idea yet of what my drs have in store for me, i'll let you all know when i know for sure if they're planning to help me or not.. gosh, i don't know what i'll do if they dont, after almost a yr and a half to be told they can't help me.. i just feel like falling appart.

besides, i don't understand it, my gi told me he thinks i should have surgery and that was exactly a yr ago, then i got a little panicked, had some biofeedback to do anyway, so there was still time to adjust, had more tests, mean time i was working on myself to deal with this decision. now that i feel ready.. i find out that my gi is not sure anymore and it's all just too stupid! i don't understand why he changed his mind now. it's also very confusing for me now. right now i just feel so broken and tired.

i also feel very grateful we all found each other. i felt so alone before i found this group and now i don't, and it helped me tremendously! please stay with us and keep us posted, everybody here are so helpful and supportive and can help you through this.

i wish you the very best, Marisa, and i'm waiting to hear about another success story from you!
Posted 5/25/2009 7:46 PM (GMT 0)
hey all,

hope someone is around to see my post..

first of all i feel totally drained, like someone has sucked all of my energy out of me. have been in a lot of stress and crying all day. here's what happened.. i was supposed to meet with the psych guy today, only he didn't arrive. then i ran into my gi and took the apportunity and simply asked him "i get the impresion from the psych guy that you don't want to send me for surgery" and he was saying "i don't think surgery is the answer for everything and i'm affraid it'll only make you worse" to make long story short.. he basicaly told me he doesn't want to send me to surgery. i went out of there crying like my whole life is ruined, not knowing what to do. so i went to work and was in stress and crying ALL day, could hardly function and do my job, and all my friends there trying to comfort me.

so then i said to myself, tomorrow i'm gonna go to my surgeon's office and wait ouside his office till he finishes with all of his patients for the day and simply ask him whether he agrees with the gi or can he help me, but i was in so much stress and couldn't stop crying and decided i couldn't wait till tomorrow, so i got his number (his cel phone is in his forum) and simply called him. i couldn't believe it when he answered the phone, cause these drs are scarcely available.

so i just burst in tears telling him that the gi doesn't want to help me and that i want the surgery and aware of all the comlications that can happen and that i wanted to know if he agrees with my gi or is he going to help me, soo.... he said come to my office on wednesday at 1 pm, bring all your medical reports and we'll set a date.. and i was like feeling i was going to faint, i couldn't believe he'll be so cooporative and all.

so although i feel so drained, i also feel very excited now and so happy that i don't need my gi to agree and can move on with the surgery.

BUT, there's only one thing i'm too worried about.. when i went to my consultation with this surgeon on Jan 2008 he was talking about a 2 step surgery, having a temp ileostomy for 3-4 mons and then a reversal and creating a j pouch.. this kind of procedure is NOT the right one for CI and is performed on patients who cant keep their rectum, but us with CI, we get to keep our rectum, so there's no sense in creating a J pouch. gosh why everything has to be so complicated..? i'm so tired.

so it's been an extremely rough day for me, but with a comforting ending.


i will let you all know what happens on wednesday, wish me luck.

Posted 5/25/2009 11:52 PM (GMT 0)
Hodaya,
You poor thing. I bet when your GI said you shouldn't have surgery you just wanted to die!! After all this time and waiting! I'm so glad you spoke with your surgeon, and that you have an appt. this week. In my opinion your surgeon is the one you should have been talking to all along. Like I said before, my GI never admitted he thought I should have surgery. He said he hated for me to have a colectomy, but my internist said to ignore him, and he totally supported my decision.

This week has been better than last, that's for sure. Last weekend is when I ate that chili and had the runs and sore bottom for days. I've been much better this week, and what a difference in how I feel. I have to keep remembering what those "good" foods going down feel like coming out!!!

Please let us know what your surgeon thinks after your appointment, and be sure to clarify what type of surgery he's considering!! Good luck, you deserve to finally get some relief.
Hugs and good luck!!!!

Janie
Posted 5/26/2009 1:53 AM (GMT 0)
Hello all....How was everyones memorial day? We met with some friends for a bbq and had a great time. But back to work tomorrow. Hodaya, my brother was killed in march of 05 by his roomates who were supposed to be friends from highschool. Nathan ( my brother) had a home and let these two friends move in with him. Well he had a job that he was out of town for weeks at a time and his roomates basically took advantage of his good nature and never paid him rent. Finally, one night Nathan confronted them and told them he wanted them out of his house. Well they got into a fight and strangled him. They then left his body in his home for four days in the laundry room. After that they placed him in his truck and drove past the Oregon border where they buried his body. He was there for two weeks before he was found. It was a very difficult time for my family. We were never able to see his body because of how long he had been gone. So that was very hard. And then to go to court and face those two ******s was even worse. Its been four years now and I still struggle with it every day. But faith and prayer really get me through. Well enough of that depressing stuff.... I am so glad that you had the courage to confront your surgeon. I never went to a gi and that is exactly why. When the first surgeon I saw wanted to send me to one I refussed and found a new surgeon who has worked on me in the past. I wish you all the best on Wed.
Linda thankyou for all you kind words. I do not know if I will get an epidural. When I had my children they never worked so I am not sure if they will try that or not. Can you still walk with one? I told my husband that he has to force me to get up and walk so I will heal faster. How soon are you able to get up and walk? I am relieved to here that you are able to make it to the potty. Thats all I need is an accident at work. lol.
Janie, its great to hear your also doing well. The chili story kinda of made me laugh because I also had that experience once. I am sure I will have a lot of trial and error for eating when I get home.
Lizzie, are you hanging in there? Let us know how you are doing. Thinking about you.
Hey I was also going to ask am I not supposed to eat anything for a day before surgery? Cuz the nurse only said liquids only the day before and nothing after midnight. And some people I heard didnt eat for a couple days before. I was just curious what you all did. Well enough rambling tonight. Have a great day tommorrw everyone!!
Marisa
Posted 5/26/2009 1:57 AM (GMT 0)

Hey guys....

Thanks for all your sweet words.....I had a good weekend, but with much paranoia. I was on the lake all weekend relaxing, but had to put a suit on. I ordered some new one pieces. I could not even have fun because I was so paranoid....I am going to look into a support group. Its just hard becuse so many I have talked to are able to have reversals of some sort....and I do not know if this loop ileo will become permanent. I am heading for Cleveland tomorrow. My appt with Dr. Feza Remzi is on Wed @ 130pm. We are driving in the night before...its about five to six hours away. I am so trying to be positive and maybe talking about it will help, but right now I have one friend who is really understanding. My husband and family are so supportive, but I think they just feel so frustrated for me.

Marisa- I am so sorry about your brother.....so sorry. I could not imagine. I feel bad for complaining. I hope your well and had a great holiday weekend.

Hodaya- Oh my little sweetness....SO SAD for you and so sorry you had to go through that alone. I wish I could have been there sitting next to you and comforting you and bringing you to see the surgeon myself. I surely would have. I will be praying for good news. Try and relax.....surgery and relief are coming....they are. Love you.

Janie- Gald you are feeling so well and had a great week. I cannot wait to feel that good :) Someday....

Linda- So glad you are feeling better. I am still feeling weak so I can imagine you are. I hope each day gets better for you and you can get rid of all these infections. How long do you  have to have the PICC for? You do not want that to get infected either.....those darn things. I love and hate them as a nurse. Hope you had a wonderful weekend and thanks for all your kind words.

Lizzie

Posted 5/26/2009 4:03 AM (GMT 0)

Hi Marisa,

So sorry to hear about your brother. What a horrific thing for you and your family to go through; you must be very strong to have dealt with that and continue on with a positive attitude.  I had a subtotal last July; I have about 2 inches of my colon left.  My surgery was open due to severe scar tissue from previous surgeries.  I was in the hospital for 5 days  and had an epidural for pain, it was the best!  I had an NG tube for 2 days, it should have been 1 but the dr on the floor didn't take it out.  You can walk all over with an epidural but you have to have a catheter while you have one.  The most pain I actually had was from the NG tube, but as you read from my signature, I'm used to abdominal surgeries.  I continue to be on a low residue/fiber diet as certain foods give me a lot of diarrhea.  I started with 20+ bms a day and went down to about 8-10 by 6 weeks.  I went back to work full time after 6 weeks as a teacher and never had any trouble other than being very tired.

I didn't do anything to jeopardize my surgery afterwards, I hired a housecleaner, didn't cook, etc. I just consentrated on healing.  It was absolutely the best thing that I have ever done.  I have never been healthier and am so thankful for my GI dr for recommending this for me. 

I wish you the very best and will keep you in my prayers.

Judy

Posted 5/26/2009 10:00 AM (GMT 0)
Marisa,
gosh i feel so so bad about your brother, what a horrifying story, just makes me so shiver and shed tears at the cruelty and violence there is in our world, i'm so so sorry for all him and you and your family have been through, so sorry.. may his soul rest in peace. i'm sorry if my bringing this up made you feel bad.

thank you all for your support, it helps so much! i'm so thankful everyday for this support group!

Janie, i actually did go to my surgeon first and he's reffered me to the gi in order to work with me and find out if surgery really is the right thing for me. the gi was set on surgery, then i got panicked, needed some time to adjust, but didn't realize that mean time my gi has changed his mind. he said "i'm affraid you won't be strong enough emotionaly to deal with this kind of surgery". i'm sure i could make him realize that i'm able to, but that would have taken me some time to do that (maybe too much time..), and right now i feel i can't afford to wait any longer than this, so i just called my surgeon already, hopefully, to see if he agrees and to get it over with, cause I'M READY NOW!!

i'm so happy to hear you're feeling better, so is the metamucil working better for you? i wonder if we have it here.

Lizzie, i'm so glad you decided to go to a support group, it can help so much, it really can!! thanks hun!! i so wish too we could all be together!! it would have been so awesome to meet with you all!!

good luck, honey, with your appt at CC, i'll be praying for good news from you too!!

i will sure let you all know what happens, thanks so much again.
Posted 5/27/2009 10:19 PM (GMT 0)
I had a nice long post written and poof! it was gone. I hate when that happens.
Marissa, yes I could walk with my epidural. I still felt pain, but nothing like I would have without it. I started out with lap. but then they had to go open because my muscles were too tight to open far enough. Ha! Who would have ever thought that of me! My picc site is doing well. I don't have it in. They took it out when I came home. But there was concern about a blood clot, that has dissolved nicely. I still have the darn infection at the top of my incision. Apparently it's from a knot in the suture. It's not going down into me, but on top like a big bubble. I'm supposed to put hot packs on it, because opening it up would be too big for now.

I'm still on a low residue diet until I see my surgeon on the 19th of June. I'm having a tough time figuring out foods for that. I'm a slow healer I guess so am taking it slow with getting back to normal food.

How is everyone doing today? I'm sorry I get all of your names mixed up with the symptoms and surgeries! I hope you are getting answers and feeling better healing. Today I am sore. I think I over-do stuff during the day.

Hang in there!
Posted 5/27/2009 10:38 PM (GMT 0)
Hey guys, I am just going to show you the email I wrote to Lori.....I am too tired and exausted from tears to write it all out again, so here it is. Love you and need your opinions.Lori,

Hey I am in Cleveland right now. I just got back from my appointment, and I am not sure what to think. I saw Dr. Remzi and he wants to see me again in six weeks to have testing done in a co-appointment with a pelvic floor specialist Dr. (sootje) I have no idea how to spell it. He wants me to have another anal manometry, defecography, and small bowel test. At this time they will then tell me what my options are. I have been crying for the last two hours. It just seems there is no answers for me.....another lady I met, the one I told you about told me not to go to Cleveland and to go to FL....that is where she brought her son. I am tempted to try and go to FL, but I do not even know if my insurance will cover me to go to Cleveland for the second appointment. He said I have four options basically, but he is not sure until the testing as to what is best for me. 1) live with ileostomy 2) close stoma and reconnect and have the chance of obstruction again and most likely laxatives and biofeedback 3) possible j-pouch depending on the results and 4) a very reluctance to do a k-pouch becuase of complications. He sai becuase of the complications and my history he is just very reluctant to do it....but not that he wont. He siad he is not closing the door on me, but he needs to have more information before he can make any decisions. I am so upset......I do not know what to do. My husband is just like yours....exactly, but I cannot live with this bag....I cannot. I feel I am spirling out of control right now. I will know in a a week if I am ok to go back to Cleveland for the testing. Until then I just deal with what Gid has given me. Dr. Remzi said I am such a complicated case and that just breaks my heart. He did a rectal exam and said I have no ability to poop. He does not know if it is my rectum or my muscles. If it is my rectum then I have options, but if it is the muscles he is not sure what to do and needs the specialists opinion. My anal manometry was normal before my TC, but that was two years ago. Also, craziest thing....last night I smoked a cigarette (bad i know) and I had a huge urge to go to the bathroom ( I have not had this in eight years) I sat on the toilet and my muscles were relaxing and I even had my husband come in and feel and they were relaxing, but who knows. With my luck they will be the problem and I will be stuck with this bag forever and have to learn to deal.....thats what scares me. I am not me now....where will this bring me? Let me know your opinions.
Love,
Lizzie

 

Posted 5/27/2009 10:42 PM (GMT 0)

Lori,

Good Luck Friday.....Do not get scared becuase of me. You are going to do great and feel much better. You truly are. I wish you the best and will pray for a smooth surgery and recovery. Thanks so much for the BCIR info and I may be calling tomorrow. Think one at a time...get through this surgery first and I know you will feel better. Love you so much.

Lizzie

Posted 5/27/2009 10:51 PM (GMT 0)
XtremeMisery....... my heart breaks for you. I want to dive up just to give you a hug. Im sorry I dont have answers for you. I will tell you I live in columbus ohio and my surgeon was awesome. He listened and did everything pretty fast because he knew I was having so many difficulties. I wish you could talk to him. I even have his cell phone if I have problems and cant reach the office.
Posted 5/28/2009 9:38 AM (GMT 0)

Lizzie,

My heart breaks for you; I am always praying for you to find the right drs to help you, I know they are out there.  Never give up, I know it's easy for us to say but we all love you and want to see you get better.

I understand your anger and frustration, I just went through a horrific ordeal following a kidney stone precedure that left me with c difficile and the drs wantinf to remove what little colon I had left and give me a permanent bag without checking everything. We rushed to my regular dr & surgeon 3 hours away and thank God they did all the testing without doing surgery and found the infection bc I would now be living with a permanent bag that wasn't even neccessary.

So I very much believe that there is always very compentent drs that are willing to help you, it just may take time; I know it's discouraging but try to hold on a little longer, I just know the right one is out there for you and you will find him/her.

(((((((((((((HUGS)))))))))))

Judy

Posted 5/28/2009 3:12 PM (GMT 0)
dear Lizzie,
i feel so bad for you, i'm so sorry things are so complicated. you have to take it one step at a time, honey, there's no magic solution for this condition. they're only being responsible by checking things thoroughly before deciding what's best to do. but as far as i remember, you've already had the defecography and small bowel test only recently, so why do they need to do it again now?

i was also wondering.. i didn't know they can do a defecography and manometry while having an ileostomy, i mean the rectum is like disconnected, how can they perform these tests this way? but i guess there're a lot of things i don't know about.

please dont feel discouraged yet, honey, there're still things to do and things to find out before we can determine anything, so you have to take a deep breath and try to be patient. i know it's hard, believe me, i so understand where you're coming from, i'm going through a rough process myself, we all are, and AM losing my patience too. but we HAVE to be positive, we MUST.

you know, you just so surprised me with what you said about smoking.. i just keep wondering what's the deal with that?? maybe smoking makes the pelvic muscles relax? it just keep puzzling me so much, but the drs don't really pay attntion to this subject, i don't know why, maybe b/c they don't know how to explain it either, but i can sure tell you, smoking DOES move the bowels, but i just can't figure out HOW? it's such a mistery to me.

BUT i can also tell you that it loses it's effectiveness with time and you get to a point where it doesn't work anymore, just like with everything else, such as laxatives.... everything we try can help at first but unfortunately loses it's effectiveness with time, that's what has happened to me, smoking doesn't help me anymore. but i know lots of smokers, who say that smoking only one cigarrete in the morning with their coffee makes them go and it's been like that for them for 20-30 yrs and keep working, so i don't know.. well enough rambling about this bad stupid habit...

i want you to know that i keep praying for you and really hope you're on your way to find a solution you'll be comforbable with, we're always here for you.

love you so so much!!!

oh, and what's FL?

BTW... i went to see my surgeon yest and i felt like such a FOOL, to think he was really going to set me up for surgery :o( ..... WHY did he have to say he would, when he didn't really mean to??????? but i have to say, he did calm me down a bit and told me that they didn't say they wont send me to surgery at all, they just need to be sure i'm ready and must have the psych guy's approval for that. i guess i made a significant impression on them with my anxiety.. oh well, i just hope it doesnt take them too long to figure me out.
he also told me that the next time i meet with the psych guy, to give him a call, cause he wants to talk to him. 
Posted 5/28/2009 4:30 PM (GMT 0)
Lizzie, I appreciate all of your thoughtfulness. Everything is going to work out for the both of us. I'm glad that you're checking out the BCIR. I think that it might be a hopeful outcome for you and I. I'll let you all know how my ileostomy surgery goes tomorrow. I'm a bundle of nerves now, and am drinking the world's nastiest stuff for my bowel prep.

Lori
Posted 5/28/2009 4:39 PM (GMT 0)
OMG Lori, it's tomorrow? i wish you best of luck and that you can fianlly feel better. you're in my prayers!!
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