Total Colectomy part 33

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Jacoby
Regular Member


Date Joined Nov 2009
Total Posts : 36
   Posted 3/24/2010 3:43 PM (GMT -6)   
Hey everyone,

I don't know why I can't write in the Total Colectomy part 32 blog anymore. I have started this new one in hopes to start communicating with everyone again!

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/24/2010 4:56 PM (GMT -6)   
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....
 
 
 
Leslieturn tongue nono
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
 


Jacoby
Regular Member


Date Joined Nov 2009
Total Posts : 36
   Posted 3/24/2010 7:11 PM (GMT -6)   
Aw leslie I wish your father could be here to see you doing so much better. I'm so sorry about your loss, I can't even imagine!

I get my surgery May 10th. I'm so anxious this next month is going to go by so slow! I am currently on an all liquid diet in hopes that will make some of my severe stomach pain go down but so far it's just the same about of cramping with hunger pains on top of it. I'm SOOOO glad to hear you are doing so well though, that's such great news! I'm only 20 so my parents are freaking out and don't want me to get the surgery because of all the possible complications. They do realize though that I have been suffering and unable to live the "normal" college life or any "normal" life at all. I know in the end they will be happy that I get the surgery but right now it feels like an endless battle with them.

God Bless,

Amanda

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/24/2010 7:18 PM (GMT -6)   
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
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
There comes a time when you must stand alone.

You must feel confident enough within yourself to follow your own dreams.

You must be willing to make sacrifices.

You must be capable of changing and rearranging your priorities so that your final goal can be achieved.

Sometimes, familiarity and comfort need to be challenged.

There are times when you must take a few extra chances and create your own realities.

Be strong enough to at least try to make your life better.

Be confident enough that you won't settle for a compromise just to get by.

Appreciate yourself by allowing yourself the opportunities to grow, develop, and find your true sense of purpose in this life.

Don't stand in someone else's shadow when it's your sunlight that should lead the way.
 


Jacoby
Regular Member


Date Joined Nov 2009
Total Posts : 36
   Posted 3/24/2010 8:17 PM (GMT -6)   
I am getting the total colectomy with the small intestine reattached to the rectum (I can't remember the actual name for it, way too much was going on in my head when the doctor told me the proper name). I know my parents have more than good intentions for me but it's just so frustrating and heartbreaking having the two people that mean the most to me not approve of such a major life decision. I know they want what is best for me, and i know they want me to be safe. I also know they are aware that I am suffering I just feel like they don't realize how often I'm in such pain, especially since I'm away at college and not living at home anymore. On the other hand of course no one would be able to understand this unless they have been through this, which thank goodness I found this blog!

It's funny because my boyfriend knows exactly how much pain I'm in just from my tone of voice or look on my face, he can just look at me and say "let me guess, your stomach is killing you??" He sees me suffer more than anyone and I feel like thats why he is so supportive of this surgery, but then again he also isn't as aware as my parents are with the possible complications. My mom is a nurse and my dad is an internet/research junkie so of course they are coming up with the worse possible scenarios. I'm just hoping when i meet with the doctor on the 16th for the last time before surgery that he will give my parents the reassurance they seem to really need!

I feel like I'm 110% for the surgery because i see it as FINALLY a light at the end of the tunnel. I understand there will be several bumps along the way and the light is still pretty far from here but its still there and in sight! That to me just makes me feel better on its own!


I know exactly what you mean about the chicken noodle soup! I'm the same way with just plain chicken broth from all the tests that I had to be on a clear liquid diet for. Even just the smell of it makes me nauseous. Chicken noodle soup is one of my favorite things to make from scratch and as i pour the chicken broth into the pot I have to turn away so the smell doesn't get to me. It's funny how over exposure like that can completely change your insight on it!

I'm sure your dad is SO proud of you right now, seeing how you have over come this hurdle in your life and you are finally getting some relief. He is smiling so bright right now, almost glowing, because he knows his daughter is finally able to enjoy life and be able to relive her 20s. I'm so happy to hear you say 53 going on 21, i feel like those words are never said anymore!

Bless your young soul :)

Amanda

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/24/2010 8:45 PM (GMT -6)   
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...nono
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
There comes a time when you must stand alone.

You must feel confident enough within yourself to follow your own dreams.

You must be willing to make sacrifices.

You must be capable of changing and rearranging your priorities so that your final goal can be achieved.

Sometimes, familiarity and comfort need to be challenged.

There are times when you must take a few extra chances and create your own realities.

Be strong enough to at least try to make your life better.

Be confident enough that you won't settle for a compromise just to get by.

Appreciate yourself by allowing yourself the opportunities to grow, develop, and find your true sense of purpose in this life.

Don't stand in someone else's shadow when it's your sunlight that should lead the way.
 


Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 175
   Posted 3/25/2010 3:57 PM (GMT -6)   
Leslie - It does my heart so much good to hear that you are doing well. I wish your father could see how well you are doing too. My hubby hurts so much over me so I have an inkling of how your father must have felt seeing you go through your misery. Don't mean to bring you tears again. Just wanting to be supportive.

Nice to meet you Amanda. How wonderful that you have a surgery date set. Your boyfriend sounds like a God send. Give him hugs for us. How long have you been suffering? I'm surprised that they are willing to do this surgery at your age. I feel for your parents. It's hard to see your child suffer as you are doing.

More and more I'm living with non stop cramps. The idea of not eating never occured to me. LOL Maybe I should try a liquid diet or at least cut back on the amount of food I eat. I'm always bloated too. The doctors say eat fiber but fiber bloats and hurts. What I would give for a peanut butter and banana sandwich on white bread. That would throw my gastro doctor in a fit. LOL Made myself laugh.

Better get back to work. Take care both of you dear ladies.

(((hugs)))

val
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
 


Jacoby
Regular Member


Date Joined Nov 2009
Total Posts : 36
   Posted 3/25/2010 5:06 PM (GMT -6)   
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

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/25/2010 5:15 PM (GMT -6)   
Hischildvalda
Thanks hun, no did not make me cry and thank you for the support.  Good god fiber was not my friend, so it was chicken noodle soup most of the time.  Feel better and hope you get the help you need.
 
Leslie
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
There comes a time when you must stand alone.

You must feel confident enough within yourself to follow your own dreams.

You must be willing to make sacrifices.

You must be capable of changing and rearranging your priorities so that your final goal can be achieved.

Sometimes, familiarity and comfort need to be challenged.

There are times when you must take a few extra chances and create your own realities.

Be strong enough to at least try to make your life better.

Be confident enough that you won't settle for a compromise just to get by.

Appreciate yourself by allowing yourself the opportunities to grow, develop, and find your true sense of purpose in this life.

Don't stand in someone else's shadow when it's your sunlight that should lead the way.
 


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 3/25/2010 8:41 PM (GMT -6)   
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

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/25/2010 9:30 PM (GMT -6)   
Hi Tracy,

Think of all that "free time" you will have if you get your ileostomy. You won't know what to do with yourself! I am thinking of you and your Appt. April 2 I think it is. If you do it, just remember ileos are real fast before the small intestine catches on that your colon is not in use any more. "Going" too much and having to empty A LOT then takes over. However, in time, the small intestine slows down and things settle. I always feel gassy but WRAP WOOD, so far so good. Will call you when I get my head above water. Minute I got home from the cruise, I had to do those Interogatorries for the suit. Now I'm dong taxes. Playing last minute "ketchup." Too bad your daughter got the CI. That is a bummer.

Hi Amanda, you are soooo young. I hope your surgery works out well and you get your life back. College is supposed to be the best years. Glad you have a nice boyfriend.

Leslie, Sorry about your dad. But I am glad you are feeling good. You have been through soooo much.

Has anyone heard from Lizzie T.? Am worried for her. How about Jen? I feel like I need to know how they are. Rosemary

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 3/26/2010 4:52 AM (GMT 0)   
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
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Ileostomy Reversal- Oct 8, 2009. Ileus/Dehydration 10/13. New rectal dysynergia-biofeedback-11-19
Bowel Obstruction 1-7-10 through 1-19....PICC, Tpn/Lipids...transferred to Cleveland Clinic 1-19 for BCIR (k-pouch). K-pouch surgery Jan 25 by Dr. Dietz in CC. Muiple complications (blood clots, hemmorrhage, three abscesses) After near six weeks in hospital home recovering. K-pouch is working wonderfully and hoping this is the end to my long journey!
"The Greatest Healing Therapy is Friendship and Love"


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/26/2010 1:05 PM (GMT -6)   


answers4me2
Ok , what part of chili cheese fries did you not get the memo on...Hello chili beans are fiber ...I could not do them either..  you have the exact same thing I had..

 

Leslie


Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
There comes a time when you must stand alone.

You must feel confident enough within yourself to follow your own dreams.

You must be willing to make sacrifices.

You must be capable of changing and rearranging your priorities so that your final goal can be achieved.

Sometimes, familiarity and comfort need to be challenged.

There are times when you must take a few extra chances and create your own realities.

Be strong enough to at least try to make your life better.

Be confident enough that you won't settle for a compromise just to get by.

Appreciate yourself by allowing yourself the opportunities to grow, develop, and find your true sense of purpose in this life.

Don't stand in someone else's shadow when it's your sunlight that should lead the way.
 


Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 175
   Posted 3/26/2010 2:14 PM (GMT -6)   
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.
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
 


Jacoby
Regular Member


Date Joined Nov 2009
Total Posts : 36
   Posted 3/26/2010 3:10 PM (GMT -6)   
Val - 22 dulcolax do take a huge toll on me. I get really bad cramping and have become best friends with my heating pad, I found it helps sooo much!! I take 5 dulcolax when i wake up, 6 with lunch, 6 with dinner, and then 5 more about 2 hours before I plan on going to bed. It's an understatement to say that I plan my life around taking my medicine haha. I couldnt agree with you more on that food list, its soo hard not being able to eat practically anything but in the long run it helps out a little, but a little is better than nothing :)

Lizzie - I completely agree with you about being too weak for the surgery. I told my mom and the doctor that put me on this liquid diet that the last few weeks before surgery I will be eating anything that comes to mind. I realize that I will not be able to eat much for a while after surgery so why not enjoy when I can :) Especially since it will be around finals time for me and it's hard enough finding time to eat let alone follow a strict diet, no thank you! lol I'm so sorry that you are having so many complications. I wish there was a magic button I could press and you would be 100% again, then again I wish i could push that button for all of us. Keep hanging in there, seems like you're a really strong fighter and thats sometimes the best medicine!

answers4me2- I tried Miralax several times and it never worked for me, I'm glad its working for your daughter!!

Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 175
   Posted 3/26/2010 7:25 PM (GMT -6)   
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.
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
 


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 3/26/2010 8:04 PM (GMT -6)   
Miralax works for me too, but I take 3 to 6 doses everyday. I take a 30 dose bottle every week. Did ya'll ever try it in large quantities? Senokot makes me feel awful and nauseas...and correctol, exlax, and stimulant meds like that make me sooooo sick I can't function.

And yes, my stomach is huge from the chili cheese fries yesterday. But, they tasted so good, it was worth it.

Jacoby
Regular Member


Date Joined Nov 2009
Total Posts : 36
   Posted 3/27/2010 5:55 PM (GMT -6)   
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 shakehead  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 smile  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!)

Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 175
   Posted 3/27/2010 7:16 PM (GMT -6)   
Amanda - I have no idea how you can go to school being in the shape you are. It's wonderful that you have loyal friends who will spend time with you rather than out partying. No telling how much trouble you have kept them out of. LOL

Myself, I work full time at a public school district as the bookkeeper. Yep, the district is so small that we only have one bookkeeper. Because of that, I am at work whether I feel good or not. I've accumulated over seven months of sick leave which will help if and when I have surgery. Being a school employee I don't have state disability insurance.

This has been a terrible day for me - non stop cramps and nausea. Somehow let myself get dehydrated too. At least I had my weekly bm thanks to Dulcolax.

Good news - tomorrow morning hubby and I are going to Laughlin for a couple of days. Wifi isn't available in all the hotel rooms where we stay so if I'm not around you'll know that we got one of those rooms.

(((hugs)))

val
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
 


Jacoby
Regular Member


Date Joined Nov 2009
Total Posts : 36
   Posted 3/28/2010 4:17 PM (GMT -6)   
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!!!!!!

Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 175
   Posted 3/29/2010 7:41 AM (GMT -6)   
Amanda - You have scheduled your surgery at a perfect time for you. So glad that things will work out so that you won't miss any school.

June and July are two of my busiest months because the new year's budget is due June 30th, then July is when I input all the new figures and payroll information. Actually, October would be the best month to take some time off. I don't want to wait that long but I don't think I can leave for six weeks any sooner than that. I will have to be off work six weeks. Right?
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
 


Jacoby
Regular Member


Date Joined Nov 2009
Total Posts : 36
   Posted 3/29/2010 9:39 AM (GMT -6)   
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!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/30/2010 12:55 PM (GMT -6)   
Lizzie,

So glad I caught up to thread 33. OH, GOD! I'm soooo sorry you are now having pouch problems! Jeeze, on top of possible RA and all you've been through. ENOUGH IS ENOUGH I SAY, so you have GOT to have some good luck in here somewhere.

You are right, I gotta focus on ME and put the case and all the crap second. As all we really have is our bodies. I missed the picture of Tracy's stomach. I gotta call her. I just gotta get my taxes mailed off first. Being away so long on the cruise really put me behind. I also have some weird gas issue. I sure hope there is no issue with my stoma. I'm back to measuring output for a few days, but all seems to be "normal" whatever that means to any of us anymore.

Will pray for you and your long awaited recover. I'm so sorry for your recent set-backs. Rosemary (Mother Hen)

Jacoby
Regular Member


Date Joined Nov 2009
Total Posts : 36
   Posted 4/3/2010 9:12 AM (GMT -6)   
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!!!!!

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 4/3/2010 9:12 PM (GMT -6)   
Total Colectomy Part 30 is still going strong so it might be a good idea to post on that thread rather than here to keep posts altogether in chronological order (otherwise people are going to get confused when we actually DO get up to part 33 lol).
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!

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