TOTAL COLECTOMY PART 23

well, we were locked on the other part, so here goes part 23.

just thought i'll give ya'll an update. i saw the psych guy today and he said we're through with the meetings. now he has to have a meeting with my gi and another dr and... they'll be in touch with me. how long will that take? only G-D knows.. meantime my life is just ending and i'm not sure i have a future.

so yeah, i'm on the waiting game AGAIN   just wish i could simply disappear and simply not be anymore.

So, tomorrow is the day I go back to my surgeon and I have a million questions for her. When I went to have my anastamosis dilated she said I have a kink in my intestines that makes a 90 degree turn and that's what's causing the problem. She said they'd have to cut it out and sew it back together. I'm wondering if it could fix itself somehow without surgery and if not what is the chance it will recur after surgery? Also, I want to ask her if the surgery is inevitable. If so I'm just going to schedule it and get it done, I don't want the cloud hanging over my head. I know the answer already from previous conversations with her though is yes it's inevitable. I am fully prepared to walk out of there tomorrow with a surgery date and I pretty much am expecting to. She said before it's up to me and how much discomfort I want to take and how long I want to take it. Well, I am not looking forward to another surgery but I don't want to deal with this for an interminable amount of time either. Decisions, decisions....although I guess it sounds like I've already decided, huh? I just want this over with!!!! I wonder if she'll let me have it now or if she'll tell me to wait until I'm stronger? It's been six months since my last surgery and five months since I've been home from the hospital. I go to the gym almost every day and I feel pretty strong. I guess I can't imagine her telling me I need to wait. I'm really all over the place with this, I know. Thank you for letting me talk it out here. I've talked it over with my husband a million times in the last week and I think we are prepared for another surgery, but not looking forward to it. I just needed to get it out on here and see what everyone else says...I really hope she is right and it will only be a three or four day hospital stay this time. She said there is less than a 5% chance that I'll end up with the bag again or even permanently. I wonder if there are any other possible complications besides the normal risk of absess, bleeding, infection, etc. I'll have to ask her....Thanks again.

Ok, so I just got back from the doctor and I'm scheduled for surgery Monday at noon. YEP! This coming Monday.... The doctor said that I have two anastamosis's, one from the first surgery and the second is from the leak I had and it's positioned 6 inches above the original anastamosis. The problem I'm having is at this second anastamosis site. She said today she is not sure if it is kinked or what just that there is definitely a problem there. If it's kinked she can just straighten it out depending on what is causing it, i.e. scar tissue, etc. but if it's something else she may have to redo the anastamosis, she won't know till she gets in there. IF I were to end up with an ileostomy she said it would be temporary, so that's a relief! The possible other complications are the normal ones. I will be in the hospital four to five days depending on what they find and what they have to do. I hope it's that simple!! For me it is never simple!!

I guess in one sense I'm relieved to know that I'm going to surgery and it's going to be fixed, but on the other hand now that it's reality I'm afraid. Luckily I don't have long to worry about it, Monday is soon!!

Amanda-

WOW!!! Monday. I will be praying for you and hope that when she gets in there it is an easy fix. I know you have had some rough hospital stays in the past and I know this one has to go better for you.....Please keep us posted. I think of you daily, and pray for you always.....

Hodaya- I know how you feel....I wish I could disappear, but we cannot. I hope that you can find some peace in this waiting game. I am in the same position. I feel your pain and I love you dearly.....please stay moving forward. Keep that little chin of yours up. This is a horrible disease.

Love you all.

Lizzie

Hodaya and Lizzie, thank you so much for your kind words. You always give the right amount of encouragement and know exactly what to say to make me feel good! I will definitely find out what was causing the problem, I too am curious. I asked her if it's just kinked if it could happen again and she said it's a possibility. That sucks!

Hodaya and Amanda-

The three of us are in yucky and horrible situations. We have eachother and others on this site and with faith, family, and friends we have to get through this. I have been crying a lot too lately Hodaya....and I can imagine how scared you are of damage to the rectum. I think you have every right to worry in that way....I did not know enough about this disease and waited far too many years. Both of you get me through the days....I have wonderful family and friends, but no one who understands the true turmiol of this disease and the fear and frustration it brings to every day of your life. A simple surgery that becomes a nightmare and the constant unknown can tear you apart as it has me....I love you guys and everyone else......keep holding and pushing, if I have too you have too. I need you.

Lizzie

Amanda what symtoms were you getting to make you go and get checked again?? i wish you well. 

i totally understand the emotional upheaval you are all going through - except maybe we are all going through different types of crisis's.

not been on here much as very busy trying to earn a living. keep in touch. x

Hi all....just checking in.

KAren- I do not know what is going on, but I am praying for you. You do not deserve to be going through all of this....I wish I knew what was going on so I could better help you. How r u feeling otherwise?

Hodaya- How you feeling honey....? When do you expect to hear from the doctors. I hope they can figure this out for you soon. We both know to well the waiting game.

I have been not feeling the greatest now for two days. I have stabbling pain in my left upper quadrant and generlized pain everywhere whoch is all new. My meds are not working. I am not sure if I should just ignore it or call my surgeon. I have to call Cleveland Clinic today to check on my appt approval, but will most likely not hear for another week.

Amanda- How you holding up? Hope this week has you busy and not thinking of Monday, but I am sure its nearly impossible. Praying for you all.

Lizzie

Karen, I kept getting partial blockages almost 2-3 a week and then they would clear. It left my doctor thinking there was a problem with my anastamosis site like maybe scar tissue had narrowed it or something so she sheduled a scope so she could go in and dilate it with a balloon to make it bigger. While she was doing it she got passed the anastamosis and it looked fine, but about six inches up further my intestines took a sharp 90 degree angle and narrowed drastically. It made her pull back because it was too dangerous to continue or try to dilate. She said there was a kink or something else terribly wrong. The surgery is for her to go in and unkink it or find out what is causing the sharp turn. I have a second anastamosis at that exact area from where my intestine tore after my first surgery and she thinks that's the exact area where the problem was. They had originally done a side to side anastamosis at that site instead of end to end because it's supposed to cause less problems. Well, with me being the "problem child" that obviously didn't work. So now they are going in to find out the cause. She is expecting to either find scar tissue wrapped around it and perhaps to have to take that portion out and redo that anastamosis. NOT FUN!! The best case scenario would be that it is just kinked and all they would have to do is straighten it out, depending on what is causing it to kink. There are a lot of unknowns going into this but it was just to dangerous for her to try to figure it out with the scope they stuck in my rear end, she was afraid of perforating it. I'm hoping it is an easy fix.

Lizzie I'm sorry you are still having this horrible pain. I know how miserable you must feel especially when you don't know what is causing it. I would definitely tell my doctor if I were you. In the meantime, I'm hoping and praying you hear back from the CC. That would be awesome!!

Hodaya I do not envy your fatigue and especially how long it's been going on. The fact that is has gotten worse has me concerned. Are you eating properly my dear? You have to get the right amount of nutrients and vitamins in your body to stay strong, although I know how miserableit can be to eat when you don't feel well. Sometimes you have to force it down. Easier said than done, I know. If I were you I'd wait 2 weeks and then call the psych guy again. Of course, I'm impatient that way. You need answers! I can't believe they've made you suffer so long! I can definitely relate to the fatigue but I have the opposite problem, I am suffering from insomnia, probably due to the stress. Try to hang in there and keep your fingers crossed, I have high hopes for you that they will eventually solve your prolem. Lots of love and prayers your way my love!!

Hodaya- I definatelt think three wekks is too long to wait....you are suffering so much and your going to end up not being strond enough for the surgery. I had the same fatigue before TC and for two months before my obstrction and ileo. Your body starts shutting down and even though it sucks to eat, the stronger you are for surgery the better you will heal and lesser chances of complications. I have been weak before both surgeries and had many complications. I love you dear and worry so much about you.....take the reigns and get this moving.

Amanda- I hate that you have insomnia, as you know I am right there with you. My director of nursing called today and is worried the patients will think I am sicker than they are when I go back on Monday. I told her I will be ok, but to be honest I have no idea how well I am going to be.....I know they will have lots of questions. The fear of the unknown is so hard and I pray for some peace fo mind for you.

I am still in pain and my surgeon said he think it may just be a "fluke" and to keep on my pain meds, but I may need something stronger than neurontin. I have pain when I get up and that has not been the case....I have no idea what is going on. My ileo is working and I have had some dry cheerios and sherbert today. I was 100.8 this am....so I need to work on that. I talked to CC and they faxed the detailed letter to my surgeon and now I have to call his dreaded nurse tomorrow and make sure she submits it to my insurance company....and then it will at least be a week until I know if I will be approved or not. So say your prayers....I am all alone till Sunday and I have slipped back into my depression....I miss my husband. Its 74 and sunny here and I have the blinds closed and have been sitting inside.....i miss me.

Lizzie

Hodaya I agree with Lizzie 100%. Even though it sucks, you've GOT to eat to be strong enough for surgery. Otherwise when you do get the green light you will not be ready and that's the last thing you want!! Then you might have to wait longer and you will be devastated. You have to be strong for surgery so your tissues can be strong. You don't want your stitches at the anastamosis to tear like mine did causing a leak, then you will be in serious trouble my friend. I am praying for you to have strength to eat and to keep going. There is still a long road ahead of you sweetie!

Lizzie my dear, I know how lonely you are. I hate being away from Michael. He gives me much strength as I'm sure your husband does for you. This time you have to find the strength inside yourself so you will be ready for work on Monday. You're boss is right, you don't want to look sicker than your patients, they have enough to worry about and as much as you do for them they will be worried about you as we all are. Try getting out of the house and going for a walk, that usually helps a little. open up the blinds and let in the sunshine. I am preaching to the choir I know because I wouldn't do it either but I know it is what is needed! And you need to eat, eat, eat!!! You are getting way too thin! You aren't going to have the strength you need to make it through a day of work. I promise work will make you feel better because you will be able to focus on other people and you will be back in your usual environment. Sitting home never helped anyone. Please try to get over the whole feeling of hating having your bag fill, that will help you eat. I wish I knew how to help you get over that. I completely feel for you though. You should be emptying more than twice a day!! That scares me! I am praying for you and sending good thoughts your way.

As for me today has been horrible. I had insomnia last night and I had to be up at five this morning for a 7am meeting I couldn't get out of, then I had to go to the hospital to get my labs done for my surgery. I am so tired! I tried to nap today with no luck and I'm completely exhausted and amhaving such a hard time even typing this. I have a partial blockage again and I didn't even eat anything I wasn't supposed to. Everything just seems to be getting stuck at that spot in my intestine that's causing all the problems. I'm in so much pain but I'm not taking anything for it because it just makes it that much harder to pass things. It sounds weird but now I can't wait for Monday to get this fixed, it feels like an eternity away. I'm on a soft diet until Sunday at which time I have to go on a liquid diet. My prep consists of only 2 dulcolax tablets at noon on Sunday and one enema at 10 am on Monday and then I report to the hospital at noon. Nothing to eat or drink after midnight on Sunday of course. I'm going to be so thirsty and hungry by noon on Monday!! I wish they could've scheduled it sooner in the day! But I was lucky to get in on Monday, they just happened to have a cancellation and my surgeon only does surgery on Mondays. I'm sitting here trying to figure out what soft foods to eat for dinner tonight.... I can't believe a few weeks ago I was perfectly normal and now all of a sudden this....

I have to be on the soft foods now because they are afraid I will get a serious blockage and require an emergency surgery before my scheduled surgery. They want to be on the safe side. The last thing they want is for me to go into an unplanned surgery and perhaps not get to the hospital in time. That would be bad! Yes, the insomnia is every night, I think it's the stress. I take 1mg xanax and 12.5 mg ambien cr every night and I still wake up around 1am and can't go back to sleep until around 3 or 4am. It's awful!!

Your weight sounds good, but you should be walking and exercising too. You want to be strong as possible for your surgery. Keep up the good work. And yes, I care about you a lot!

Amanda i really wish you well for your surgery on Monday.  I really dont know where you get your energy from - you amaze me starting up your own business after all that surgery before. 

I am still suffering with fatigue and have no energy at all still unfortunately.  it could be cause i am depressed may be?

Yes Lizzie you must be about 7 stone (in my language) - i can never get my head around pounds.  that is rather underweight for someone who is 5" 3?  i am that height but i dont know how much i weigh.  the lowest i went to was about 115 lb which is around 8 stone - which was unnatrual for me but i was hardly eating - that was over 5 years ago.  then i went the other way and put lots of weight on in the last two years. 

Anyhow i do hope surgery comes soon to you Hodaya so you can get some relief.  the best thing to eat if you cant stomach much is soup or stew. I do wish all of you well.. 

my reversal wont be until the end of summer - the NHS is rather slow.  i am scared of the reversal as i know i will mean worrying about loos whereas now i dont have to.  another bridge to cross i suppose, but amanda has done ok  and Janie is seems....xxx