TOTAL COLECTOMY PART 28

Jen, i missed your last post. don't worry, i too had my period much earlier than it should be, but that's only our bodies in trauma, it'll hopefully settle down again as it did for me. don't worry if you have one slow day every now and then, that's o.k and normal. i had those slow days early after sugery, but i always got the bms back the next day.

Hi all.....

So today was an ok day with many emotions. I had my counselling appt first and we are working on coping mechanisms, my insomnia, and the anxious thoughts that run through my head. It was a good appt. I then had biofeedback tonight and it did not go very well. She did some external manipulation and it hurt so BAD....my left side is much worse than my right side. She then did some internal stretching and she noticed some spasms. When she put the sensor in (just to remind you all I was down to 2 mcv) I was consistently at 15-25 in my internal sphincter and my external sphincter was contracting on its own as we watched the screen. She said she agrees that going back to Cleveland would be a good idea. esp since I was not having any issues when I was there with my bag. She said my rectum "is acting like an angry monster" and she is not sure why it is so angry. It was a frustrating appointment, but then my husband and I talked and dealt with my What If's and went and picked up my new car and that was exciting. I am not sure what is going on, but I know that I do not feel well and I guess I am in need of some re-evaluation and Cleveland is where I feel I will get the best care and answers. Its a five hr drive, but I am hoping to get in before I go back to work. My RN case Manager called to check on me as well today and she is very concerned about my "nutritional status" and called my pcp and I have to go in on Wednesday for labs and a check-up and plan. I am not vomiting, but the nausea with every meal and little po intake cannot be good for me, esp with having to use laxatives twice a day. I just wanted to check in.....let you all know. You are my true support and if I did not have your ladies I do not know how I would be doing. You get me through the hardest days and I know you are always here no matter what my situation. Thank You all for everything and for your continued support. You never get sick of hearing or asking and I cannot tell you how valuable you all are to me.

Lizzie

Yes Lizzie, we are definetly all here for you. All these problems are so frustrating. And everyone thinks that just cuz you had surgery that it was a miracle fix all. All my friends just assume that I am cured. Thank goodness I have a great husband that understands. And this site of course. It is the best thing to talk to people who understand what I go through every day.

Hodaya, how is work going? I definetly thing 8 hrs. is plenty to work. Thats what I do and I am plum beat by the time I get home. Sometimes we dont get a break and that really reaks havic. I hope your employer can understand that you are trying your best but your health is also important.

Have a good day everyone!! Jen, I hope you are getting stonger everyday.

Hodaya, sorry you're having issues at work.. I just don't get some employers! It's hard to find good employees, so they should value you and work through this issue. I know it's hard to go through this surgery and still have issues! Hopefully, you'll find something that works.. or at least be able to speak to a doctor you feel comfortable with.

Jen, hope you're having a good day and getting better and better!

Lizzie, wow - a new car! That's an exciting event, was it an early Christmas present? I hope you know that we are here for you, and believe me.. I myself am very comforted to know you are all here for me as well! What a fantastic group.. maybe someday we'll all be able to meet. I think CC is worth your trip.. I seriously thought about it too.. but feel good with my doctor.

Marisa, I'm a chicken too when I have to confront someone! Hopefully, you were able to talk to his wife.. Wow.. some of us are lucky ladies to have such great hubbies! I bet you love your new ring! My wonderful hubby updated my wedding set when we hit our 20th last year! I don't wear a lot of jewelry, but I do love my new wedding set! We bought it in St. Maarten when we were on a cruise last year..

I was checking my insurance online today and my hospital stay has been approved for 7 nights.. gosh.. this is really just around the corner for me! I find myself starting to think about it more and more as each day gets closer. I have stocked up the house with things, and now all that is left is for me to give the house a good cleaning. My sister will be watching our dog, and my older son will be caring for our 7 yr old (who actually is our grandson that we are raising - but to him.. we are mom and dad).

Hello to everyone else!

Its been a rough day today. I have been in bed basically all day. My husband made Manwich last night for him and the kids, and I thought hey Ill try that....something different from my bland chicken. Well mistake! I was up and down all night and ended up having to take vicatin today due to cramps. Also downed a lot of mylanta for indegestion. I won't be making that mistake anytime soon. I'm still laying in bed but I did eat some cream potatoes and a little grilled chicken for supper. Not going to help with the weight but just have to get things out of my system. Hopefully tomorrow will be a better day.

Lizzie I forgot to ask you about your new car when we were talking earlier today. I hope you like it.

Marisa I bet you love your new ring. Doug and I have been married for 15 years and he wanted to give me an anniversary band this year but my medical bills put that on hold. I could have had a nice ring for the $3100 we have to pay for my surgeries. Oh well that's just how things go....always next year I told him. I've never seen so many medical bills piling in.

Hodaya I'm sorry you are having a difficult time with work. I feel very fortunate to work for the State of NC. My fellow employees donated annual leave to me and my supervisor told me I could stay out until January 20th if needed. Hoping that is not needed but glad to have it. I really feel bad for you. Hopefully things will work out and they will see how valuable you are and you should get paid correctly.

Jenise you are doing exactly what I did prior to surgery. It's almost like nesting! Just make sure you have someone to take care of the cleaning and things like that when you get home. Don't be like me and start housework early which may or may not have played a part in my complications. I'm sure you will do great with your surgery.

Rosemary I bet an iv solution would be a good pick me up. I really think getting fluids like that for people like us really helps. I find it hard to stay hydrated because I'm just not used to drinking a lot.

Hope everyone else is well.
Jen

How much water do all of you drink per day.

All of my GI docs said 3 quarts of water per day, plus other liquids so we don't form kidney stones.

If we are not in possession or do not have the use of our colon, we are supposed to drink enough to output 2 quarts of urine per day.

Ocassionally I do measure urine output in one of those hats they give you at the hospital to pee into. I usually put out 2 quarts per day, but still feel dehydrated as evidenced by feeling soooooo much better after my IV.

How much water do the rest of you drink?
Rosemary

Good morning everyone!

Rosemary, I'm glad the IV helped you! I am not very good about drinking.. I really drink more now then ever - solely because I have been exercising. On a normal, non exercise day.. I drink maybe 4-5 glasses a day, which I know is not enough! I have an overactive bladder.. which does make me not want to drink, otherwise I have to pee all the time! I know where every single bathroom is located, and if I don't - it's the first thing I look for (just incase). When I had my surgery 8 months ago, I had a TVT bladder sling, and was sent home with a catheter.. which I had for 3 weeks! I measured my output, and when my bladder was full, and I went.. it was usually around 250 mm (or ml..?_) guessing.. I probably voided 1-1/2 quarts a day.. maybe close to 2.

Jen, gosh.. sure hope I remember to head the advise here and not be tempted to eat what I shouldn't! I know that I'd be tempted too, so I must resist! Hope your tummy is feeling better today. Luckily, I know my hubby will take care of things and pamper me. I'm going to be real careful, but don't blame yourself for what happened, I think it is just a complication of this surgery - and you happened to be one who had it! Almost done with my nesting!

Janie, I hope everything is smooth sailing for me too! The doctor didn't mention the NG tube.. so I'm not sure! I do know I asked what the biggest complication of the surgery is.. and he said it was Postoperative Ileus (bowels not waking up). I did have this with my last surgery - it was awful.. and I hope I don't have it again. I never heard of thyroiditis either.. but I'll have to google it! Anyway, I hope what the doctor suggested works for you, but what out for stomach/kidney issues when taking so much Aleve.
I'm sure that you'll probably have to keep adjusting the MiraLax depending on your diet for the day. Thank goodness for that stuff! After my last surgery - I couldn't go at all! I was taking a ton of laxatives and stool softeners.. and finally tried the Miralax.. which I too titled my miracle drug!

Hodaya, my insurance is covering 7 nights for a normal procedure, with no complication. If I have any complications that cause me to stay longer (I hope not!) , they will cover it 100% (thank goodness!) Since this surgery is in the same year as my last.. I have paid ALL my out of pocket expenses (about $5,000) and now.. this surgery will cost me $0. *If* I should end up with a temp ostomy.. then it would be reversed in a new year, and I'll have to pay $1000's again! :( Not going to think about that! Glad you have an appointment today! I hope that it will yield some good information that is helpful to you! Let us know how it goes!

Lizzie, sooo.. what kind of car did you buy!? I love new cars.. but I'm not into cars too much until I bought my new car last year. It's a Mini Cooper, and I just adore my car!! It's just so darn CUTE!! LOL

Thanks for feedback on the urine output. I guess I'm in the average ballpark. WIthout use of the colon or without the colon, it takes more water going in to equal 2 quarts going out. The only reason I'm into this is that I sure don't want a kidney stone on top of everything else. If I asked about this at my PCP's office she would write up that I'm obsessed. Here is great, I can just ask a question and get an answer. Thanks, RJ

Amey,

I would pursue the not peeing issue. It's not normal not to urinate. I know your bio says subtotal colectomy....does that mean you still own some colon? If so, the colon does pull water back into your body which is then excreted through your kidneys. If you have no colon, then you have to drink even more because the terminal ileum of the small intestine reabsorbs SOME water back into the body but not as much as the colon does. Lack of hunger is a sign of dehydration. I am working with a naturopathic doc who is actually the most help with this whole body liquid balance issue. I have not found a traditional medicine doc who knows as much about this. Try to drink more and see if your appetite improves. After my IV yesterday I had that good old fashioned gut grinding hunger I used to have prior to my whole mess. It felt sooooo good to eat and enjoy. Today, as the IV has long worn off, I'm back into the same old not hungry thing, but eating anyway. Rosemary

So I'm having abdominal cramps this afternoon and evening and feel bad. The cramps are not intense but noticeable and my appetite is low. BM's are only induced by suppositories. I have taken Mylanta and have a heating pad on my stomach. Trying not to go the vicatin route. I guess I will see if things deteriorate before I call the doctor. Sort of paranoid after the last event and the surgeon telling me to call him if I have cramping that doesn't cease. It's just hard to know when to call, and I'm more of a wait and see kind of person. So I told my husband I will wait to see how things go overnight and tomorrow morning. Now if they get really intense I'll call but I'm thinking it will get better. So aggravating!
Jen

Hi all,

I just logged on to ostomyland.com. On their home page is a link to an article from the London Sun. The title of the article is A Man Horrifically injured in a motorbike crash now uses a remote control to go to the toilet - after being fitted with a BIONIC BOTTOM. Professor Norman Williams at the Royal London Hospital used this guys knee muscle to repair his groin and hooked up some remote control to some nerves in his pelvis. WHen he has to poop he just flips the remote switch, poops, and that is that. He was at first fitted with a colostomy bag, but thought so much could be done these days he searched further for an option he was more comfortable with. If the story is off the ostomyland.com home page when you log on, I will post the complete URL. It is a fascinating article. I am keeping this article for future reference. If I wasn't an adhesion former like I am, I would contact this doctor in London. Rosemary

Just a little update:

Well, I went to the pcp today and I have lost 9 lbs since Oct 30....he said my weight is still in an ok range, but if I would keep dropping then tpn may be a discussion. I had four viles of blood drawn- he wanted to check my cbc, cmp, thyroid, b12, folic acid, and magnesium. He basically is seeing how I am doing nutritionally despite the weight being ok at 100.6. Also, I am going to Cleveland Clinic to see Dr. Zutshi next Thursday at 730 am. It is almost a five hour drive and my hubby cannot go so I am not sure what I am going to do..I may be going alone :(

Now the confusing part that may mor may not make sense to any of you. I had rectal therapy tonight and as I said Monday my anismus was back full force aand my rectal tone had gone from 2 pre-surgery to 20-25. Today I went and to be honest I had not eaten a thing all day and hardly  had anything to drink. I had done an enema in the am and felt pretty good b/c for me not eating=feeling good...so sad. Today my rectal tone without eating and without MOM was 5! We were stunned as this is a crazy difference and the correlation has to be related. The only thing that was unfortunately the same and evidence of my anismus showing its ugly head was when i was to bear down I was still contracting in both my internal and external sphincters. She is going to send me with all of this information and we will see what happens...I do not know what to think. I cannot go everyday without eating to feel good, to not get nauseated, and to not have as much rectal tone....its just not quality life.

Amey and Rosemary- I pee, but not all that often...i am horrible at drinking and have had maybe 12 oz today an its almost 7pm. I know horrible...bu i just feel too nauseated with to much in my tummy. I just ate and feel nauseated...I have had a wopping 400 calories, but will try and get more in tonight. I am sorry Amey that you are still having issues...I no the feeling of no appetite, but not the bum burning. I feel so sad, but in a way wish I had it :( now doesnt that make zero sense. Rosemary I am so happy fluids were able to give you a pick me up...they do wonders. If any of you lived close i would come over from work and start IV's on you all at night so you could have better appetite and strength!!

Jen- I have talked to you and you know how worried I am...its the nurse in me and I truly think they kessed up not sending you home with a PICC line and on TPN/Lipids. I feel for you and hope you will call if anything thing seems worse at all...I think you ahould call tomorrow am no matter what. Your surgeon seems very in tune with your body and you are SO SO SO fragile. Just worried about you....

Anyways....not sure if any of my biofeedback crap makes any sense...

Thinking and praying for all of you. Love you like family....

Lizzie