TOTAL COLECTOMY PART 27

my goodness.. part 27 already!

Jen – Best wishes at your pre-op today! I know the day is getting so close.. and it’s weird to think I was suppose to have surgery yesterday! Instead – I got the barium enema!

Marisa – ((HUGS)) you really have so much going on in your life, and I’m sending prayers to you and your family. We always plan how life should be, but it doesn’t always work out the way we plan and thin it should. I can only imagine what it must be like watching this situation with your parents. Stay strong.

Schmuel – I really thought we would hear from you by now.. hope everything is going well and your just too tired to log on and update us. Please let us know how everything is ASAP.. we miss you.

Christy - Gosh, I just hate it when I post a whole bunch and lose it! Glad you came back and posted again, it’s great to hear from you. My surgery was suppose to be yesterday, but the surgeon became uncomfortable with reviewing the reports and wanted me to have this barium enema first. Now I have to wait and see where it goes from this point. I hate the waiting – I was so ready!

F1ghter – It sounds like you have had your share of doctors that don’t know what to do! It’s so frustrating, and makes you not know what to do! You know, I DO absolutely relate to the diarrhea being harder to get out – which makes me nervous! I have not been diagnosed with Anismus (how do they determine this?) but I do know I struggly and strain much more with very soft stools!

Judy – like Lizzie said, you are our glue here! I really try and focus on your success, and your positive vibes. We all need that so much!

Janie – Today is your defecogram – isn’t it? Gosh.. I hate that test, but hope they are able to see if what’s going on, and if it is a rectocele – at least that can be fixed! I do have to admit – these rectal issues do scare me, as I know I am going into surgery with pelvic issues…

Tracy – Tracy, thanks for the links – I’m heading to check them out. When is your next Dr. appointment – December? Will this be another new doctor? I DO think that the mesh could be an issue.. but this test didn’t see the mesh, or at least they didn’t comment about it. There is no doubt that things are worse now then before the mesh.

Hodaya, how is work going for you? How is your pooing going? Are you still just going little bits? You mentioned your doctor dismissed you, so does he ever need to see you again, or it is just over with him unless you need him? We spend so long working through our issues… have surgery, and then the doctors leave us!

Conmarjo – it’s good to hear from you. I hope your test tomorrow gives you the desired results and you can get on with life again. Sounds like you too have been through so much!

Lizzie – don’t apologize for being blue, you can’t help it. You really have been through a lot these past few months, and now having surgery and getting off your med’s… it just normal for many to have the blues! I do no ever suffer from depression, but I did get the blues after my last surgery! I just couldn’t stop crying, and I really didn’t know why I was crying and so down. It did pass, and yours will too. ((HUGS))

Rosemary – try not to focus on any adhesions, don’t let worry rob you of joy! I know the thought can be scary, but it’s out of your hands. I wonder why some get adhesions more then others… I don’t think I have them badly, yet I have had 4 major abdominal surgeries.

I’m heading out now to pick up the report from the barium enema.. very curious as to what it will say! I’ve mailed out the disk to both of my doctors and they should have been faxed the reports.. so it’s a wait and see from here on out

Hi everyone I survived pre-op! It took 4 1/2 hours. Exhausting! I was able to ask the doctor all my questions and he was very nice and spent time with me and explained everything. He told me the surgery would last around 3 hours and they would try lap. May have to switch to open because my ascending colon has fallen into my pelvis behind the rectum. Could be an issue. He said I would be in the hospital for 5-7 days.

The hospital I am having the surgery is great. Everyone who has had surgery there says it is like staying in a 5 star hotel. You have your own personal nurse and they wait on you hand and foot. We will see.

One big problem that I have discovered is my kids cannot visit me while in the hospital. Noone under 18. My kids are 8 and 11 and are going to FREAK! They are very attached to me. My husband is not going to tell them until after I have my surgery because they will just dwell on it all weekend and make things hard for me. Plus my son has autism and talk about obsessing about things.....whew don't even want to go there.

My daughter is sick. She threw up in the car on the way to school this morning. Complaining about a sore throat and ran a fever all afternoon. I am freaking out scared I am going to get sick. I have some anitbiotics here, I wonder if I should start taking them.

Well I will check in later. I have so much to do.

I know all you guys are going through so much. Just try to keep your head up.

Jen

I am telling you am so scared I am going to get sick and not be able to have surgery Monday. My daughter is sick. 101 fever, sore throat, headache...Yikes. I wash my hands constantly, Lysol everything but still scared. Any ideas on interventions, anything I should take. I do have some antibiotics here. I just cannot get sick. I will be devastated if I can't go ahead with the surgery.

Jen

Marisa, you started a 2nd thread, but I wanted to post it here:

evans18 said...
Wow, is it just me or are you going through these quick!! My mom was placed on life support last night. I left today at work so I could go and be with her. All I could do is stand there and hold her hand and cry. Gosh, this is so hard. I am taking tomorrow off work so I can be there for her and hopefully be able to talk to a doctor. I am not ready to let my mom go. We had such a terrible relationship when I lived at home. Ever since I have been married we have grown so close. I am losing my faith and that scares me. I know there is a God and I truly love him its just that my family has been through so much. I havent been to church in a year because I really do not know what church to go to. I am a baptized mormon but have struggled with the religon for years. I need church in my life but do not know where I belong. Any suggestions anybody? (Sorry to get religious but I am desperate)

Christy it was great to hear from you again. Its been awhile.

Thank you for all your love and support and prayers. I am so emotionally spent I am so tired!!

Will try to keep you all updated, Love everyone

Marisa

I'm soooo sorry about your mom! I know it is hard to let any of our love loves go, but I think it is harder when the go too soon. My thoughts and prayers are with you. Don't lose faith, there are reasons we can't know why God calls us home unexpected. ((HUGS))

Jen-

I think your doing all you can....universal precautions: handwshing, avoid sipping off her cups, do not let her brethe right on you, was evrything, etc. m so sick right now....i have 100 fever, aches, cough, and slept for 10 hrs straight. I feel like I can barely move. I had my labs drawn yesterday and will see if my electrolytes are better. Its my lasy day of pain meds and emotionally I am feeling a bit better. I am worried becuase without the MOM I feel I would not go, but i do with it and do not have to take much. I dont know....I am not eating much or drinking much at all with this flu and my hematoma is like an alien and i hope the fever from the flu does not mask something going on with my hematoma. I just am so prone to infection. I was supposed to get out tonight for my MIL suprise retirement party and now I do not even know if I can go and I do not want to expose a room of people. I live in a condo building and my neighbor did not even want to get in the same elevator with me...she said i looked and sounded awful.....

I wish you the best Monday, I know how hard it is to have it cancelled and I do not want that to happen to you....and I dont think it will  if you keep up the good work of cleaning yourself, her, and everything else.

Marisa- My heart breaks for you.....I do not have any words. I oray God can guide you through this terrible time. Do not focus on the past relationship with you mom, but the recent, loving closeness you have. You have to. Know you mom loves you and she has fought a good fight. Let God take control from here and all you can do is tell her how you feel, hold her hand, and be there with her. She may me unresponsive, but she knows. I am praying for your peace of mind and strength....you do not have to go to church to have God in your heart....he loves you from a far and from the church. Worry about you right now and staying as string as you can.

Lizzie

OMG, I am so exicted.  My TEE was normal, no blood clot and I can go off coumadin.  No blood clot and I had a normal poop this week, life is good.

Lizzy -

I am approaching 3 weeks and 3 days post reversal and still feeling weak. It took every ounce of energy for me to walk 3 miles this morning. I still have NO appitite. I forced myself to drink one Boost w/ High Protein today and to eat a 1/2 protein bar. I drink about 1/2 cup prune juice to help me go and I will go about 15 times in the day (probably 12 times at night). I think you are doing great. Just considering going to your MIL party was a huge accomplishment. During week 2 post surgery, I wasn't still having problems just homeschooling my kids. I was in so much pain I could not concentrate. Even now I have to take about 3-5 baths a day just for my sore bum and my incision area/hole in stomach from the where the bag was hurt/burn constantly - especially when I wear pants. I mainly spend most of my day in panties and long shirts and I live with gobs of butt cream. My dr told me not to go back to work for another 6 weeks from now and I am grateful. There is no way I have the strength or the energy to consider going back to work.

Keep resting and recovering. Honestly, I think you are very strong and your doing great for being 2 weeks out.

Keep me posted. I think of you often.

Hi everyone,

Marisa, I am so sorry to hear about your mom. I'm sure she knows you're there now, and that's the most important thing. The past is just that, and you're with her and loving her when she needs you the most. I have struggled with faith myself the past several years. I've lost my 3 best friends, all way too early. My last friend to pass away lost her 35 year old daughter to ovarian cancer and then she died of breast cancer 3 weeks later. Both my friend and her daughter had more faith than anyone I've known in my life, but still a family was torn apart. Three little children lost their mother and a grandmother in less than a month. It was the closest family I've ever known and now they have completely unraveled. My friend's husband just doesn't want to live...it's been over 2 years and he's only gotten worse. The daughter's husband is getting remarried and won't let his children see their grandfather; they were all in business together, the business has failed and the family is completely torn apart. I think of my friend and remember how important her family was to her and then I look at what's happened and just ask why. I know there is a reason out there somewhere, but for now it's hard to imagine. I think we all struggle at one time or another with faith, so don't be too hard on yourself.

Judy,
I'm sorry to hear about your issues at work. I hope everything works out for you. It's such a shame that you have to go through this; it wasn't like you were out on vacations all those days. Good luck! Glad your pooping is good though!

Amey,

I so can sympathize with you and your sore butt. I was just saying that I can't believe how sore my butt has been for 7 months! I have days here and there where it's not an issue, but many days I take 4 or more hot baths just to relax my muscles, and to ease the pain. I truly hope it won't last so long for you. When do you drink your prune juice and how long does it take to get things started? After all these months I'm still trying to figure out when the best time to drink it is; it usually makes me go within an hour or so, but like you, I go about 15 times for the next 4 hours.

Peltzier,

You have been through so much. Whenever I start feeling sorry for myself and my issues, I think of you. I can't imagine going through so much to have a bm. I was diagnosed with GP a few years ago; I took the test with the radioactive egg. Nothing moved through well until they gave me erythemicin (sp). I've really never addressed it since I was diagnosed because with the CI, that seemed to be the biggest issue. I had alot of acid reflux and I'm not sure what contributed most to that, but since my colectomy, the acid seems to be better.

Jen,

Good luck! I hope you're able to get through the next few days without getting sick. I know before my surgery I started getting a little sore throat and I was so scared. Luckily I didn't get sick, but I was really worried. Hopefully those germs will stay away!

Jenise,

Was the barium test you had a small bowel follow-through? I had one before my surgery and it just showed a slight delay, but nothing serious. It was the worst test I had, I think. I didn't drink barium because of how constipated it made me, but instead drank this horrible tasting stuff, like old mouthwash. I had to drink 2 large glasses and I threw it up after the test. That rocking and rolling for the test didn't help; it was just horrible.

Hodaya,

Haven't heard from you, hope you're doing well!

Lizzie,

Hang in there sweetie. I hope you get rid of that lousy flu soon and start feeling better!

I know I've left so many out, but I'm thinking of you all and hoping you're doing well.

I had my defogram this week and it wasn't bad at all. I think it was different from the first one I had; this time I drank the barium, had the paste in my vagina and my rectum, and then just sat on the pot and the technician stood beside me and told me first to squeeze as if I was trying to hold it in, and then to try to expel it. I had one minute to try to get it out, and I got about 1/2 out. She was so sweet and it wasn't as embarrassing as the first one was. Maybe I've just gotten used to people looking at, prodding and talking about my butt and pooping, I don't know. Anyway, I was looking at the screen and I can see that I have a rectocele, but it wasn't that large, I can't believe that's the reason I can't get the poop out. She said it's definitely there, but she's seen so much larger. I see my surgeon on Thursday to get the results of this test, as well as the sitz marker test I had 2 weeks ago. I'm anxious to see what the tests show, but worried that if the rectocele isn't the reason I can't seem to empty there may not be much else to try other than an ileostomy. I'd have to think really hard about that one.

I have been drinking my prune juice nightly and that definitely helps, but keeps me tied to the bathroom all evening. Tonight I tried something different. We went to dinner with friends and then wanted to stay out for awhile longer, so i took a lomotil to slow things down. I know that sounds crazy, but that 3 week period when I was doing so well, I was taking a lomotil in the afternoon and metamucil at night and in the morning I'd have a great bm...and during the day I'd go a little and I felt great. Then it just stopped. Well tonight I took the lomotil with dinner and so far, nothing has happened, but I don't have that horrible pressure I get when the food moves to my rectum after eating. I really don't care about how often I go, I just don't want that pressure. I'm still thinking and trying to figure out what to do, my doctor sure wasn't much help last time I saw him so I'm trying to figure it out for myself. I drank some metamucil a little while ago, so hopefully in the morning I'll be able to go. If not, I'll drink my prune juice.

Hope everyone has a great weekend!

Hugs,

Janie

Lizzie,

Try drinking prune juice. I drink 5.5 ounces (small can) and it works pretty well. Also, my doctor kept telling me that if I didn't eat, I wouldn't poop. I know when you aren't going it's hard to eat more, but maybe you're not eating enough to go much. Also having the flu is probably making you feel worse. Let us know how you're doing.

I didn't drink prune juice last night and took metamucil instead, which used to work pretty well. It's the only time I've ever had really formed stools. Well, so far this morning I've only gone a little bit, I'm eating cereal to see if things get moving. If not, it will be the trust prune juice this morning for me.

Who would have ever thought it could be so difficult to poop?

Jenise, wow. All of your test reports are all different. How weird and SCARY! How are you to make an informed decision if the tests aren't all consistent? When do you see your surgeon again? I am anxious to see what he has to say about this? I wonder if they will remove the redunant part of your colon and if this would make you a better pooper? I can't wait to see what he has to say.

Lizzie, I know even if you don't eat you still should have to poop...maybe not as much, but even a liquid diet will produce poop. I know you are very scared....I am scared for you. But maybe it is just a slow day???? Try miralax if the MOM doesn't help or the prune juice. Also, can you use suppositories? This may help. I am so tired of worrying about pooping!!! And I bet you REALLY are! Do you feel like you have to go but can't? I hope you get it sorted out and soon.

Judy, can't you use 60 days a school year if you have to? I am eligible to get in the sick bank this year and they said you can use 60 days? I was unsure if that was a one time deal or not? What are you going to do about paying back the 30 days? That would surely not be fair if you were approved and paid for those days???? I am sorry about your kidney stent causing spasms. I have spasms when I have a UTI and it is almost unbearable...you are one strong woman to still be able to work and function with spasms like that. I also know that spasm type pain is very hard to control. When I had rectal spasms, no pain pill would touch it. I cried for hours when I had those spasms. YUCK

I hope your doctor can go in fix this problem and very soon.

As far as pooping once a day, that must be wonderful...

Judy, your work issues... this all seems so unfair - it's not like you were out taking a vacation or having fun! I hope it all works out for you, and fairly. Sorry you have to face more things with your kidneys - and I understand why it's so important to wait till summer.

Tracy, I have issues getting gas out too. In my x-ray exams.. it shows gas trapped in the sigmoid. Are you or have you had the barium enema test? I do think they will still go forward with the plan on resection my sigmoid, but now I wonder if they will also resect the transverse colon - since it is redundant and prolpased into my pelvis...?? I know both the radiologist and tech made it sound as that the only treatment is surgery, and wished me luck. I have to think if they get rid of all the kinks, things will flow out better. Again, I will go in prepared that I suffer from pelvic floor descent (no surgical correction available) and I will not be looking to poo like my hubby, but I sure do hope I can go without excessive straining, laxatives and my fleet glycerin! I also hope it will get rid of the excessive bloating and cramps I suffer everyday.. tired of it - as I know all of you are too!

Rosemary, I know you have been through so much.. and I guess they are right that medicine is not an exact science. I have had 3 defograms, at 2 locations, and read my 3 radiologist PLUS 3 doctors (colon, GI and uro-gyn) They all show a rectocele, one shows a sigmoidcele and internal rectal prolapse (I think this test was more revealing - showed my sigmoid, other 2 did not) I've had the sitz marker, shows CI, most markers remained, and 13 trapped in sigmoid... I have had 2 pelvic MRI's - but don't have the reports on those, this last test also showed a rectocele, internal rectal prolapse and said "no sigmoidcele, but visualization is limited due to extreme redundancy", also - from my research, a sigmodcele can only be seen on a defecogram - while straining! I just have to trust this team of doctors who are looking at it all, and hope they can determine the best plan of treatment. I know I need the rectal prolapse fixed, I do not want that coming out of my body! I do think 2 of the doctors are very conservative, and not jumping into surgery without looking at everything - so for that I'm grateful! They hope to make this my last surgery, and so do I!

Jen, how you doing today? Staying healthy I hope!

Rosemary, I think I am using the wrong wording... when I went to my last appointment and questioned the "pelvic floor descent", they (uro-gyn & colon surgeon) said that they can fix pelvic organ prolapse, such as what I had with the sacral colpopexy, but that there was no actual surgery to "fix" perineal descent . I too thought that was strange, because I had the pelvic floor surgery, but after researching, I think they mean the muscle damage done can't be repaired... upon straining, my pelvic floor clearly descends.. not as much but still does, even though I had the sacral colpopexy and my vagina, bladder is now fine!