TOTAL COLECTOMY PART 27

Hi Hodaya!! Just noticed you were on!! What time is it over in Isreal? Hope you are doing good.

Hi Jen,
Hope you're home and doing OK.

Lizzie,
Thinking of you always; hope you're better.

Tracy,
Hang in; thinking of you always.

Janise, hope your docs are informative.

Thinking of everyone else too. Good night. Rosemary

Need to Vent:

I am so depressed I cannot take it anymore.....i dont know what to do. I am at a loss, i feel alone and if n =onone understand what goes through my head everyday, how do i get better? will i?

•Marisa

Heaven sent butt burn cream? Is there a name for this amazing product and how do I get some? I have tried baby rash medicine, neosporin pain relief, lidocaine, cortizone, butt balm, and vaseline. Right now my butt is on FIRE! I cannot sleep because I feel like I am sitting with a match up my butt.

I am going to see my Dr tomorrow to see if she has anything in her bag of tricks.

Thanks.
Amey

Amey, wow.. thanks for sharing your story! How wonderful you are finally able to go, I'll pray that you have a lifetime of success! i'm so sorry you lost your mom at such an early age. Have you ever tried "Butt Paste" it really has helped my children, and myself when doing those awful bowel preps. It can be found at any store in the isle with Desitin.

Rosemary, I laid in bed last night thinking of all the questions that I will ask and find out. My doctors are good when I am face to face, but not so communicative when I email.. so I think I should have a pre-op appointment just to go over my questions. Maybe I should make an appointment with my GI too.. just for feedback. He was very against me having surgery at all, but then when he read all my tests results, he feels it is necessary. My uro-gyn felt it needed 6 months ago, and my colon surgeon.. I think he has been VERY cautious. Even 4 weeks ago, I had a $2000 pelvic MRI, (2 weeks prior another, my 3rd defecogram) the uro-gyn stuck to his initial diagnose, but the surgeon didn't feel 100% comfortable and ordered the barium enema. Now he said he has the whole picture, and surgery "should" help, of course - I go into this realizing that it is not a guarantee. :(

Hodaya, after reading your post, I got the nerve up to ask my hubby what his "normal" is! Keep in mind.. I NEVER revealed my bathroom habits to my husband.. he never knew my issues until this past year! I made he tell me how he poo's! LOL, sure enough.. you're right he sits and goes! AMAZING! I really can't ever recall not straining.. I don't even recall when I started to use enema's, but it was around 20 yrs ago. Since my last pelvic surgery, It is worse.. I do strain more and have to rock back and forth and lean back as far as possible. I know something has to be tried or else I will eventually get a full rectal prolapse. Especially once I reach menopause.. things will get worse. Those hormones do help our tissues.

Lizzie, ((HUGS)) I wish I had words to help you. You really sound like you're in an awful state of depression. I think you need to seek out professional help. Don't be afraid to do that...

Marisa, how are things with your mom? Think of you during this difficult time, and now you're sick! You poor thing. Something awful is going around our area too.. fever, sore throat, cough, etc. Take it easy if you can and hope you and your little boy soon feels better.

Tracy, that was one BIG baby! I TOTALLY wish I could go back and have had a c-section too. My first 2 were C-sections, and I PUSHED to have my last as a vaginal birth. Oh my gosh.. I ended up in the hospital with emergency surgery to repair the vaginal canal tear (torn up the length of my vaginal) as I was hemorrhaging! They didn't immediately notice because my doctor sewed me up right then, and packed me full of gauze.. I was holding my newborn, and the doctor was leaving the room, in a hurry to get home, but thank God, he did a double take, turned around and lifted my sheet.. I was bleeding out! Nest the room was in a panic, my baby pulled from my arms, hubby and family rushed out and I was an OR Stat! That vaginal birth experience landed my in the hospital for 10 days! Here I am .. 21 yrs later and it still is haunting me. sigh.. 20/20 hindsight.. wish I had it too.

Janie, more often then not - if you have one type of prolapse, which a rectocele is kinda, chances are you have others. Did you or do you have any other issues pelvic wise? Bladder, uterus, etc..? I sure hope I don't end up with issues after the surgery. I have been able to pass the defograms, and my uro-gyn said my pelvis is pretty good, and I do work on exercises that physical therapy gave me.. so I can only hope at this point. I have read that fixing my rectal prolapse alone will not work because of how redundant my colon is , but the success rate is good if all the redundant colon is removed.. Even though I have CI, he feels the right side is working and I think his plan is to remove 1/2 the transverse, all the descending and sigmoid.. and hooking the transverse up to my rectum, Plus doing a rectopexy and rectocele repair. With the rectopexy, they will secure the rectum to my tailbone, fixing the position so it doesn't prolapse downward.

Jen, hey girlfriend, we miss you! Hope you are home in your own bed recovering! I felt so much better being home (last surgery), because it was hard to sleep when people kept coming in the room all hours of the night! Please tell me how you feel.. physically, as I wonder how awful I'll feel at Christmas time.

So.. I have a lot to do if I plan on having surgery in 3 weeks. I don't have the date, but I think it might be 12/2 or 12/4 since those are his surgery days... not sure if he is trying to have my uro-gyn there at the same time because of the mesh.. so that could make getting a date much more difficult! (he is always busy and booked 3-4 months out!) Anyway - I need to start Christmas shopping - and have everything done and ready!

Jenise,
Sounds like your docs have done enough tests and have certainly not rushed. The plan you told Janie about in the above post sounds like it was well thought out to take into consideration all the issues you are dealing with. I wish you all the best. Sounds like all your docs have your best interest in mind.

Lizzie, I hope you can sort out everything that's going on with you. Ask your counselor to help you separate the depression from the physical issues. For the physical issues can you find out from a doc why you have to take a laxative now that you don't have your colon? (Having an ileostomy my output is always total liquid. Not having an ileorectal anastomosis myself I certainly have no first-hand experience with your situation. But I would imagine that all bowel moves would be total liquid if that is what comes out of the small intestine. (At least that's what comes out of mine. We're all so different though.) I must admit, I don't understand how a small intestine can be constipated as the water hasn't been absorbed out of the effluent. I'm confused. But, whatever, I sure feel for you and sure hope you can get some answers and feel better soon. My thought are with you.

Amey, WOW what a story you have. I hope you continue to have good success forever (you deserve it.) We could all get together and write a book!

My mom's heart is skipping beats, slowing up, going fast, real irregular. SHe may need a pace maker. But first the hospital is trying to get her off some of her many meds the nursing home has her on for beginning dementia because those meds can interact and cause heart issues. At 2:00 I'm supposed to go for a hot air balloon ride for an hour. Hope I stay OK and have fun. It will be cold. A friend is driving from Connecticut to Massachusetts for this. I'm a bit nervous.

Rosemary

Amey,

Thanks for your explanation.  I'm so sorry you have had so many issues; I truly hope this will be the last surgery you'll need.  I'm also so sorry about your mom.  My mom had issues her whole life until she retired and was able to not be so busy.  She is 85 now and still drinks prune juice from time to time, but by taking metamucil every day she is pretty regular.  Until she turned 62 though, she took a laxative every Sunday....to get ready for the week.  She never had tests done, but I doubt she actually had CI, or she wouldn't have gotten better on her own, do you think? 

I read in another thread that you drank 1/2 cup prune juice after every meal.  Does that make you go all the time?  I know prune juice makes me squirt for a few hours.  I only drink it in the evenings now, but yesterday I didn't....just took the miralax.  It worked, but not as well as the prune juice, and I needed an enema this morning.  I usually drink a small can which is 5.5 ounces.  I wonder if it would be better if I drank a little less a couple times a day?

Can you take metamucil and miralax together?  I hate having liquid bms all the time; aside from the butt burn, I just never feel cleaned out.  For a month I took metamucil at night and the next morning I would have a large formed bm....without much effort at all.  I think that was the best month of my 54 year old life (mid May-Mid June, 2009).  I will remember it forever!! LOL

The best cream I've found for my butt burn is calmoseptine cream.  I've used it daily for 7 months and it's wonderful.  I've tried others, but this is the best I've used.  My doctor gave me a sample when I went for a followup visit, and he was right about that at least!

Jenise,

I had cystocele surgery a year ago, my bladder was literally falling through my vagina.  I haven't had any problems since then; I see my GYN next month and we'll see what she says about it.   I too had a large baby 29 years ago, 10. 3 oz.  Back then they didn't do C-sections unless absolutely necessary.  I'm still paying for him!!

Lizzie,

I understand your fear, but try not to dwell on it.  If drinking juice works, then drink juice.  Have you tried  miralax?  I'm not sure how well it's working for me, but I didn't have to drink juice yesterday.  I'm hoping as I use it more, it will build up in my body and work a little better.  Also, my doctor told me to use an enema every day if I needed to...and I do use them most days.  At least it helps to get things moving.

Hi to everyone else....back to work!

Janie

 

Jen,

Hope you're doing OK and are just resting at home.

Jenise, Good for you. Thorough testing and what sounds like a good plan, then faith. That's the best one can do. Best wishes. Rosemary

Home sick again today! Amey, you sure gave me a great laugh about a match being lit up your butt. I know its not a laughing matter, but its the same way I feel. I am using hydrocortozone anti itch cream. You should get something and try it. Do you use the flushable wipes? They have helped tremendously. I really look up to you and your faith. You seem to have a great attitude. Thank you for your inspiration.

Jenise, Happy to hear you have been looked at thoughourly. It sounds like you are at peace with your decision to have surgery. I think you have to be for this surgery. You have definetly researched the ins and outs and have gained a lot of knowledge.

Lizzie, have you started on any antidepressants? I really think it would help you. I feel so much pain for you. You have come so far. You are a great person and an inspiration to many. Hang in there.

Jen, Hope your healing. Let you family help you as much as possible.

Love you all!

Marisa, thanks - I need to hear that! I think the surgery plan changed from what we first discussed - as he specifically told me I would NOT need one, so I'm a little freaked out. FAITH.. that's all I can have right now. He did say TEMPORARY.. so if I wake up with one, I'll just have to know it is temporary. So sorry you're still under the weather, hope you feel better soon.

Janie, my you had another big baby too. My first baby was 29 years ago too! She was 9 lbs, but a frank breach.. her feet were up at her head and she was bottom first. They tried to turn her in my 8th month.. but she was happy in the position she was in.. so it was a C-section for me. #2 was just because the first was, they didn't like to have vaginal births after c -sections. By the time #3 came.. they were allowing it, and I pushed for it - he was "only" 9-1/2 lbs. LOL

Lizzie, I am so sorry that you are so depressed. I think when you heal a little more and go back to work that you will feel better. I understand your fear about not being able to poop. It consumes my entire life! I am hoping with more time, you will be able to regulate bm's. Please, keep posting and if you ever want to talk to somebody on the phone, then email me your phone number and I will call you. [email protected]

I am still constipated, but, I am going to try to do 1 clean out over the weekend. I am going to take 1 dose of miralax daily, then take extra miralax and senokot on Friday and Saturday. I sure hope this works because I can't continue to sit on the toilet hours every single day. I have stuff to do and a life to live. LOL

Jenise, wow, you are having surgery....FINALLY! I am kind-of jealous! I am still sitting here going WHAT DO I DO???? I am so retarded, but only want to make the right decision.

Tracy

Janie, that is exactly what miralax does to me. It does make it softer, but I can only go a tiny bit at a time. But, it is the best laxative I have ever taken because when I take it in mega doses, it works pretty good. I just can't take too much during the work week. My trials and errors are constantly changing due to the fact that I have to take more and more miralax and now senokot. I go through a big 30 dose bottle of miralax a week. Luckily, I buy in bulk at Sam's club, so I buy 2 bottles every 2 weeks. Did you know that Sam's club now carries generic miralax??? It is called ClearLax....I may try the generic next time I need to buy it. I did buy the senokot in generic...I hope that doesn't make a difference...what do you think? I so hope the miralax works for you. I am with you, I would take miralax every single day for the rest of my life if I could just get this outlet problem fixed.

Since going to the doctor yesterday and her telling me that I am not drinking enough, I will increase my water intake. My problem is I drive a school bus and I can't drink alot due to the fact that I can't just pull over and go to the bathroom. Last week I peed my pants running to the bathroom, and then had to drive like that. EWWWW it was nasty. I may have to wear pads...I don't want to, but I may not have a choice. My husband told me to buy some depends and just pee and drive. I was like NO!!! I really need another sling installed since I had the 1st one removed when it eroded through my urethra. But, I really am not looking forward to another surgery....

Plus, taking laxatives can't be good when you are dehydrated from not drinking enough fluids.

lizzie, how are you tonight? I hope you are feeling better. Tracy