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,
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"