First and foremost I love all of you with every beat in my heart and every inch of my soul for caring for someone you have met through writing and texting, but never in person. I just want you to know I have never taken for granted the research, ideas, or wisdom you all have given me and I have advocated for many things becuase of you girls. I feel like your my family and although not one of you have a k-pouch you still try and understand me.
My surgeon did leave out of the country shortly after I saw him Thursday. I was ok until Fridat evening when I went to empty and nothing came out (not even the water I was flushing the tube with). I started to feel very ill and by 10 pm it had been four hours and I knew something was not right and my belly felt rigid so I called Clevelans. I made the resident call the on call attending surgeon explainng that eventhough I live in a great area for medical, I do not for the k-pouch. He did and called bacl 10 min later and by this time it was almost 3 am ( I had last had output at 6 pm) and they told me to go to the local ER and be airlifted to Cleveland as I needed to get there and could not drive five hours. I went to the ER and was evaluated quick, started an IV and given some pain meds. The ER docs called Cleveland and before I knew it I was kissing my hubby goodby (they have no extra room) and was on top of the roof in a helicopter. I am scared of flying and was in terrible pain so they half sedated me with dilaudid and versed. It was an hour and 30 min flight and I was there. I was examined and looked over, but not one test was done until 5 pm....this was 24 hrs after no output and I was miserable. So what do they do...inject about 500 ml of contrast into my pouch. I was dying in pain and crying, but the xray showed the balloon that was holding my tibe in place had moved against my pouch wall and was acting like a obstruction (hence all the same symptoms including a fever). My husband was irrate they were taking so long when they were so worried of perforation or more damage to the pouch and valve. I then had a CT ordered by the doctor covering for my surgeon and again more contrast. I was NPO the entire time except for the contrast. I felt so sick, but the test showed my pouch was intact (a bit swollen and full....no crap!) and so they finally about 2 pm deflated the balloon and pullled the tube and dtool, blood, pus, and contrast came pouring out of my stoma. The stoma nurse and doc tried to stick in another tube but could not so I mentioned trying my catheter I use at home as I had brugh an extra since it was stiffer. I was able to get it in when they couldnt and the nurse secured it and hooked it up to a foley bag. By this morning I capped off the tube and have just been emptying every 3 hrs like before, but the pain from them prodding me and keeping a tube in for over 24 hrs and keeping stool in me from 6 pm fri until 3 pm Sun was horrible. I will be admitted May 6 if all goes well until then and surgery is May 7. I asked about an ileo, but at this time my surgeon does not want to give up on my pouch and is hoping my body will have less complications and heal better and so am I, but if not I know I still have the option for an ileo as they will not need to use more of my small bowel since it did not perforate as they were worried.
As far as my rheumatologist. He does know about my motility issues and even called my surgeon at CC to make sure I could be started on steroids. They are helping, but I still have swollen joints and pain every morning and much less strength in my hands esp and hips. I will talk to them about the biopsies, but they all know why I am on the steroid and never mentioned anything....i will ask as it cannot hurt. I am not sure why I am still running low grade fevers....that was even on Levaquin the ER put me on....since all this happened I have not had my labs done from Rheumatologist yet, but going tomorrow am and making a follow-up with him a few days later.
My mom is home and I am so happy....i feel so safe with her and my husband both here and I can spend all day with her. She feels I lost more weight with this hospital stay and that my color looked gray. I am very cautious of eating which is not helping in the gaining before next surgery, but I am doing my best with the vitamins, minerals, and protein adam is adding to my sugar free pudding and strawberry/lemonade shakes. I do not get the calories, but at least the good stuff. I think I am probably about 97 lbs and have time to work on that if all goes wellw with this tube.
I thank you all for caring and really would fly anywhere to all meet in the middle or if you all live closer I can fly to you, but I want to hug you all in person and spend a weeekend together someday....we have to make this happen. You have become family, friends, and so much more to me and without you I could not be the person I am.....you are my angels sent to protect me and I thank you for that. For now....please pray for some peace and quiet....no er, co sero-med, no obstructions, etc before May 7! Pray for my husbands strength and know I do the same for all of you each night. I care so so much for you all that words cannot be enough. You all have my number and can call or tect anytime. I usually always have my phone, but sometimes I just feel to weak to talk all day so I text alot.....get on that Rosemary!!!!!! haha....nah it was great to hear your sweet voice. I cannot sleep from pain, but going to take some more meds to see if I cant get to bed. I had a long day with my sister threatning suicide and begging my parents to take her child and adopt him since the court terminated her rights indefinately and there is no father in the picture. Its just been an extra stressor I cannot deal with. If I lost her....not only would it destroy me, but the pain it would cause my parents would kill me even more. They have given their lives trying to make her better and she justdoes not get it. I spoke to her for an hour tonight and explained she chose cocaine over her son and she cannot see that picture.....the poor little guy has is coming back to my parents tomorrow and I hope this all gets sorted soon. She took 40 ambien the other night and called my mom to say "good-bye" and I told her that life is not always fair, but drugs arent the answer to fix the times when your falling....I would be dead by now. I am trying to help save her, but I know I cannot...its exhausting. I just do not want her to die and feel I did not do enough. Argh.....see this is why I do not sleep.
Amyways....have to empty my tube....hope it works. Love you all. Sorry for the lengthy email.
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. Now developing some type of RA and aving issues with pouch. Going to get scoped this Thursday 2/8 in Clevelans. Say your prayers.
"The Greatest Healing Therapy is Friendship and Love"
Posted 4/13/2010 12:45 AM (GMT -7)
WoW! You really did great recapping your whole ordeal. I understand it and I knew nothing of internal pouches. So it was the balloon they put in that caused the obstruction and you are doing better yourself with the cathing! Typical that the patient can do better on their own. Well at least they caught what the issue was and removed the balloon. That must have been brutal with all the contrast in that pouch. Ouch! Glad the pouch itself is OK other than the valve slippage which hopefully they can fix.
I thought they likely airlifted you. That is good as the drive would have been way too much.
Is your sister in good physical health other than trying to kill herself mentally? To "wake her up," if she is otherwise physically healthy, is make her look you in the eye, then say, "you have your physical health; I am fighting for my life. Do you get the picture?" She CAN stop drug abusing. She CAN get herself to a rehab. She HAS the power to live. You on the other hand are fighting for your physical life. She is in better shape physically than you. If she does not get the picture, then try to let it go and focus on you. Much easier said than done I know, but there is a time to let go of other's issues when you are in worse trouble yourself. Put you first; I did not with a similar family issue dealing with a mom who had dementia, and look what happened to me. Now she is better off than I am. Has perfect guts and is on dementia meds that have her actually very sharp mentally. Just not fair.
Glad we can be there for you. I really did learn to believe that there are angels on earth during my ordeal. They don't have wings like in the catholic school picture books. THey are normal mortals walking around who likely have fallen into trouble themselves and can relate to you. Just like that TV program touched by an angel a few years back. THey took the form of regular humans. That is what I have learned to believe are angels.
Miraculously a neighbor actually taught non-techie me how to text the other day! Now I know! The mystery has been solved. I still have your number, so you may even get a text from me soon. I gotta just remember how to do it. hehehehe!
Take good care. Glad your parents are back and your husband is with you all the way through this. They are your angels too. Without the obstructing balloon you will likely do OK. If not, just air lift back to CC and the ball is in their court. They would get soooooo sued if they did not deal with you and they know it. You will get the help you need.
God Bless you my dear. Prayers and angels all around you. Good night Lizzie, Rosemary
P.S. I did have one night at Lahey when I thought I was going to die. It was about my 3rd week of post-op ileus when my bowels were still not awake after that extensive take down of adhesions and the ileostomy. I was going on one of those endless walks they make you do with the ileus (we called it walking to Canada) and I was all hooked up with the NG tube. It was after dark and I came to the end of this hallway. I caught a reflection of me in the mirror and what I saw was my reflection in the window but without all the tubes and so on. I looked like the healthy me and there was this glow above my head which I thought was a reflection, but it looked really different. I was NEVER a believer in the mystic, always very practical. I blinked my eyes and sort of shook away the vision I saw of myself and I then saw my reflection of how I really was all hooked up with the IV pole and the NG tube and all. But I really believe that vision I saw was a vision of good things to come, at least for now anyway. It was VERY freaky. By then I was off all drugs except Motrin and was in no pain. It had been three weeks since I had any anesthesia, so it could not have been the effects of that. To this day it was absolutely unexplainable. But I see it as a miracle and learned they do happen.
I think we will all be able to meet on some cruise ship somewhere when all this is said and done. It would be quite the reunion. We will all likely look pretty normal but will have a whole LOT of knowledge the rest of the world does not.
Posted 4/13/2010 6:00 AM (GMT -7)
It's so good to see you here Lizzie! Thank you for filling in all the blanks for us. Praising the Lord for bringing you through that very rough ordeal! It's just terrible what misery you went through. People used to say "They can put a man on the moon but thay can't _____." In this case it is amazing to me that modern medicine can allow a patient to suffer so severely as you did/are. Of course, I will keep you and your family in prayer.
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
Posted 4/13/2010 10:03 AM (GMT -7)
This blows my socks off too Val. With all modern technology can do.... Rosemary
Tracy, well, I'm being brave again and venturing off on a Queen Mary Atlantic crossing to dance my feet off. THen coming back to dance again enroute back. Got last minute bargain prices. Sure hope I stay OK but so far so good and not wasting a minute. Rosemary
Posted 4/13/2010 6:57 PM (GMT -7)
OK, am packing tonight to go dance on the Queen Mary and I am really nervous. Take off is THursday. I hope I am not pushing my luck. But this make the best use of the time I've been given thing is really driving me. BUT, I am taking a friend who in one year lost her husband, her mother, her father-in-law, her son-in-law. She herself is developing serious eye sight issues that surgery and meds are not helping. And she is only late 50's. THen there is poor Lizzie and others suffering on here. I gotta just have faith that I will be OK and go for the gusto in life. Never before my 2006 disaster surgery did I realize how vulnerable life is and what a gift it is. I will focus on giving my friend a good time and try not to worry too much about myself. Have been OK for 2 and a half years now, so gotta let go.
Do other people with ileostomies for whatever reason have to go for a walk right after they eat? I just can't sit right after I eat much less go to sleep after eating. Even though all passes OK, I just really feel more comfortable walking right after? Just curious if others have the same issue. WIsh me luck crossing the Atlantic and dancing, my passion. I will keep up via internet. LOTS of packing tomorrow. Take off is Thursday. YIKES!
Posted 4/13/2010 7:07 PM (GMT -7)
Rosemary Wow, what a great job...kick up your heels and go for it girl...
1984 Tubligation 1992 Diagnosed with Thyroid tumor
1993 Gallbladder Removed 1997 Hysterectomy 1998 Carpol Tunnel
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2006 Right Knee Replacement 2005 Breast Reduction
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
Currently it is Friday, January 18, 2019 9:15 PM (GMT -7)
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