Total Colectomy part 33

Jacoby
So tell me how are you doing?  Its been a month for me and I feel great, love it, can't believe it.  I have not felt this good since my 30"s, so God has truly blessed me and I just wish that my father could have been alive to see me better, he passed last Oct, and that is all he wanted for me to be better.  He would say a rosery for me every day and prayed his heart out for me along with countless others.

So God has smiled on me and for that I am thankful, so very thankful that it's makeing me cry thinking about all I have been through and the loss of my dad.  OH CRAP  got to get off time for a good cry....

Leslie

Amanda, Bless you sweetie...are you having a total colectomy?  I am sorry there are so many on here I forgot what your going to have.

You know the hunger pains  " oh I know so well as I starved myself most of the time"  they will finally get to you and you have to eat...Plus being hungry you tend to swallow more air so that will give you gas.  I use to eat chicken noodle soup all the time and crackers.

I cannot even look at soup the same way.  LOL  Your parents are freaking out because they are not the ones suffering, just trust that your going to be ok.  Surgery gave me life, and my dad died of a rare blood disease that lead to Acute Myloid Lukemia...and wish he could have been here but I know that he knows in heaven that I am ok, and you will be too.

Sending loving prayers for you youngster as I am 53 going on 21  lol

Leslie

My sweet Amanda,

  I am so happy to hear that your boyfriend is so supportive, how cool.  Give him a special hug for me.  You know all of my friends have quit calling me to go or do anything or just even to chat. Cuz I was the sick friend and they probably thought in there heads that I was making half of this stuff up, but no.  I think that hurts as much as anything.  But when I get more energy as I still wear out easy, gosh its been a month post-op, I have to remind myself not to do too much cuz I will pay for it.  Not bad just aching more or the tiredness if I take a shower and put on make-up, and run to the little store...wow, exhausted.

But I have to realize as you will too that we were not eating right to have strength so it will take some time.  But I love to eat now, and cant wait to go, go , go...

That is great that they are going to hook you back up just like me...we shall be twins...

Your parents job is to worry, but your young and I am old and I did just fine and I am sure you will too.

Have a good night

Leslie ...boy got to get off of here tonight...

Lizzie - I know exactly how you feel about the friends thing. People definitely view you in a different way and start to think "is she doing this just for attention". I dont know how many times i've over heard someone saying that or had one of my true friends tell me that someone said that about me. It kills me to think that anyone would ever accuse someone of acting like they are in so much pain for attention or saying that it's all in their head. I'm so glad that you are doing well. I heard that for the first few months even just getting ready, as you said, feels like you just ran a marathon. I guess its something we are going to need to get use to. Each day you'll get stronger though and hopefully start feeling even younger than 21 :)


Val - I have only been suffering since August of 2008. It happened all of a sudden and I've progressively gotten way worse. I started out with severe constipation all of a sudden and they tried me on everything under the sun and the only thing that worked was the Dulcolax Bisacodyl. I started out just needed 3 a day and progressively got worse, I now take 22 a day and that sometimes isn't enough to make me go. I went to the Cleveland Clinic to see if they had any answers. Went through everything under the sun and the only diagnosis they had for me was colonic inertia. My current GI doctor at Rush in Chicago referred me to a surgeon also at rush. We met with the surgeon in december and I gave him the whole story. He set me up for a colon transit test (stitz markers). The results of that were not good, he said that my transit time was over 100 hours. He said that a normal person is at 40 hours and when its time to think about removing the colon the results are normally at 60 hours. Obviously, I was above and beyond that. He said it was a quality of life thing, basically if this disrupted my quality of life then something had to be done. As im sure you and everyone else in this blog know it more than disrupts my quality of life. That's kind of where we are at right now. I see him again on the 16th of april for the final consultation. I'm just keeping my fingers crossed it all works out! With your cramping and stomach pain, have you tried the prescription Bentyl? I felt it helped me a lot with the nausea, not so much the cramping but its worth a shot. Also I went and saw a naturalist doctor. He figured out that I am very sensitive (not necessarily allergic though) to wheat, gluten, dairy, and sugar. I cut those things out of my diet and the cramping on some days died down a lot!! - just another thing to keep in mind. Anything is worth a shot when you are in such pain!!


Trying to stay 100% positive,

Amanda

I have found that eating food with NO fiber works best for me. I was whining on here because my stomach was full of gas and very painful and I figured it was the fruity cheerios I was eating. Well, I didn't eat them today and my stomach is not so painful. But, I did eat some chili cheese fries tonight as I was at a ballpark, so, tomorrow I am sure my stomach will look like a balloon. YUK

Amanda, you are so young...BUT, my 14 year old daughter has the same thing. I took her to the hospital twice with severe stomach pain and uncontrollable vomiting. Guess what the diagnoses was! Constipation. At the hospital they administered several enemas and got no results. I finally told them enough, I am taking her home and will give her tons of miralax. She now has to take miralax everyday!

I have colonic inertia and a pelvic floor dysfunction. I guess the colonic inertia is hereditary...Do you have trouble getting the poop out normally? Because I do and it is a major, time consuming pain in the butt....LOL

Hi all....

I have had a rough three days. I have been having some issued with my pouch and have to head bck to Cleveland for a scope. I can eventually get the tube in, but its not going in easy like it used to and ever since my 16 hour ordeal and ER visit last week when they probed around in my stoma over 100 times things have not veen the same. I am hoping its just inflammation and not a slipped valve...if it is that means another major operation and I cannot even think of that right now as my body is just starting to get a little stronger. I think I am finally gaining a couple pounds, but something is definately different and when I talked to the ET nurse todat at Cleveland she said I need to have a scope and make sure all is ok since I am so freshly post-op. It has been very painful intubating and I am pulling up lots of blood. Yesterday it took an hour and a half to get it in on one try. I am exhausted getting up every three hours during thr night ehile my pouch heals. So please say your prayers I am just severly inflammed inside from what happened last week.

I saw my pcp and he is definately sending me to a Rheumatlogist. I had to use one of my 100 mcg Fentanyl patches (with norco and valium.....feel like i am going to stop breathing just to stop the pain :(  to even be able to get myself off the couch today and my wedding ring has not fit now in two weeks. Mt left hip is so bad I am walking with a limp. He wanted to put me on prednisone, but steroids impede healing and with me just having sucha major surgery and since my pouch is nowhere near healed and I am having clear issues right now I have to just bear through it and use the pain meds I have, ehich he said for my size, being under 100 lbs the amount of pain meds I am would knock out most grown meds. I told my mom there are times I feel like I am dying the pain is so bad, but again I am staying positive and hoping this is just my bodys response to all the trauma from the surgery and complications and will disappear with time. I am trying to stay as positive as possible.

Tracy- I had the same issue as you.....since they put all the fiber in these cereals that ised to be the only thing i could eat. I love dry cheerios I have been having horrible pain from the fiber and can barely eat it and that was one way I was getting calories. For now I am sticking to sugar free fudge pops, sugar free pudding with whey protein my husband makes me and he makes stawberry/lemonade slushes with strawberry protein. I know my calories are not enough, but for now these are my safe foods and sometimes I have some graham crackers. I have lost the desire to eat turkey or chicken which i used to love and not eating cereal eeerks me, but it made me thorw up yesterday and I had stabbing pains and couldn not get my tube in so its not worth it, but i do sneal in a few handfuls :) I am so worried about you.....I hope that you get the help soon as if everyone saw the pictures I saw they would be horrified as I was...I love you and am praying for you.

Marisa- I am hoping your pain is better today and your resting and able to eat my little love. I know you  love your fruit loops, but I am hoping removing the gallbladder will help the pain and help you be able to eat more foods that build your muscle so you can get on that bike this summer and be able to hold it up! Love you as always.

Leslie- You are such a great help to everyone...so glad you are doing so well sweetie!!! I will keep [raying for you.

Amanda- May will be here before you know it....I am glad that biofeedback was a success for you as it only works in about 50% of people and I tried three different times and even though my anismus disappeared with my ileo it came right back despite more biofeedback and botox. I will pray for your peace as this surgery comes. My only advice to you and I know its hard, but you need to be as strong as you can for this surgery and an all liquid diet isnot enough. I am a nurse like your mom and because of how complicated my case has been I went into every surgery very ill and malnourished and it made my recovery much worse and may have contributed to my complications. There is a 1.5 oz liquid called benecalorie and has 330 caloried and 7 grams of protein and can be mixed with liquid and you can order it online and you really should be using that or taking ensure or protein/meal replacements to build up before this surgery or I fear you will go i too weak since you have a couple months. Please think about it....I learned the hard way, but I had no choice and had to be on tpn for many weeks.

Mother Hen- Oh how I love you and please get your eating back on track so you do not end up in the hospital or dehydrated or malnourished while you go ahead with your work for this case....its imprtant, but you are way more important. I love you honey and think of you everyday and pray for you, the case, and admire everything about you. Pleas eat up tomorrow for me and take a break and get back on your schedule of taking care of you too....YOU come first my love. Update me tomorrow.

Peltz- I hope you ok....I hate infection you poor thing. Unfection and me gohand in hand unfortunately. I am praying for you and waiting for an  update. Love you honey,

Lizzie

Amanda - Thanks for sharing the details of your troubles. Your condition sure hit you suddenly! I can't imagine taking 22 Dulcolax per day. 4 just about kill me. You don't suffer in any way when you take them? Do you take them all at once? Sorry to ask so many questions, I don't mean to be intrusive. Sounds like you have a doctor and surgeon that will work with you. That's a blessing. I do have a prescription for Bentyl but use it sparingly because it causes constipation, as most of the meds I take do. Your list of foods that you are sensitive to looks like my list of favorite things. LOL

Lizzie - Bless your heart! You are sure going through some tough stuff. You are not only healing fromsurgery but suffering with your hip as well. Please forgive me, I'm sure you have posted what the problem is. I just want you to know that I feel for you and ampraying for you. As I am each of you.

Miralax - I've taken it faithfully for almost a full month and nothing. Seems a lot of doctors think this is the number one cure for constipation. Maybe it is for normal people but not for us. Yes, Tracy, I'm grateful that it is working for your daughter. Bless her heart, she is way too young to deal with constipation that severe.

Amanda, sweetie I don't know how you have such a wonderful disposition since you are hurting terribly almost constantly. Do you work or go to school? I can't imagine you doing so. I took 4 Dulcolax tonight and am already nauseated.

Thinking good thoughts about the rest of the crew - Mother Hen, Marisa & Peltz (although we haven't really chatted yet), Lizzie, Leslie.

Val - I do go to school.  It's pretty hard to sit through classes at times but I know that I can't let this completely hinder my life.  I have learned when to schedule my classes based on my pills, cramping, and having to go.  Occassionally there are times when I do need to leave class early because of pains, nausea, or having to go.  I hate going in public bathrooms so I try to avoid them but when you gotta go you gotta go. Aside from classes it does put a damper on my social college life.  Ofcourse I can't live the normal college kid's life where they go out and drink all night long every weekend.  The thought of that just makes my stomach turn   My friends completely understand and try their hardest to make sure that I still get to spend time with them on the weekends that doesnt envolve alcohol or staying out until 4 in the morning, thank goodness I was able to find friends like that!

answers4me2 - Sometimes you just gotta do what you have a taste for   I'm sure it's will always be well worth it when you get the chance to eat that one special food!!!  I tried 2 full caps of miralax 4 times a day and got no relief from it, I'm so glad it works for you though!!!!!!

Hope  you all are having a nice and relaxing weekend (that is as relaxed as your body lets you get!)

Val - Yeah I honestly sometimes wonder how I do it too!! What if you have your surgery the very begining of summer so then school is not in session and there is less book keeping to do? I am getting my surgery the week right after finals so hopefully I will have all summer to get well enough to had back to school in the falll.

Have a lovely vacation!!!!!!

six weeks does seem to be the magic number. I'm sure if you talk to the district about everything thats going on they will be happy to find a sub for you so that you can get this surgery done as soon as possible. I don't want you to wait until october either, living like this is already painful I can't imagine waiting months in pain and anticipation. It's been 2 months for me waiting and honestly its been the longest 2 months, I cant even imagine waiting 6 months!

As my surgery date comes closer and closer i've been thinking more about it each day, and I came up with this question. Did you guys have a tube down your throat the first day or so in the hospital. My mom is a nurse and thinks that they will have a tube with suction making sure no bacteria grows, is this true?


Hope everyone is feeling better!!!!!