TOTAL COLECTOMY PART 30

I want to scream.. I just lost a BIG reply to everyone!!! I HATE that!!! Now I need to condense it some...

Lizzie, praying for you always!! Just so happy that they finally found something!! It just is another reminder that doctors and tests don't always find thing even though the conditions are real - and NOT in our heads! Thank goodness, that at least one test finally showed something and they are working towards helping you. I'm so anxious for the test results tomorrow.. I'm thinking and praying for you! You're too young to have your life on hold with being ill like you are. I know you're worried about your job and home.. but they mean nothing if your not here to enjoy them. You'll find another job and you'll have another home.. right now focus on getting YOU well!

Karen, welcome to the best forum! I also had surgery last month (Dec 9) and was in the hospital for 9 days. I had a sub-total, where 18 inches of colon was removed, plus I had a rectopexy (for rectal prolapse) vaginal repair of a rectocele and a Perineorrhaphy/perineoplasty for pelvic floor damage. I had both a colon surgeon and my uro-gyn operating. My procedure was open, and my recovery has been amazing! I feel almost %100 normal, and I'm doing far better than my doctors or I though I would! We do have many young women on this forum who are in their 20's and 30's. I'm 48 and Janie is about my age (and I think Judy is too) Rosemary & Gilda are close to your age.. glad you found us!

Tracy, I just had a big post to you and I lost it!!! Anyway, I'll try and remember all I wrote. for as long as I can remember, I have always been constipated ... but just suffered in silence. However, I do think that a major factor in my issues progressing was due to my childbirth injury. After that, I just couldn't get it out, and resorted to using soapy water enemas. I wasn't one for taking laxatives, as I was afraid to become dependent on them, but I found myself dependent on using enemas. At some point, I started using those little fleet liquid glycerin things - which worked like a charm for me - so I became dependent on those too! Anyway, was always able to go some and get relief until I had the colpopexy and rectopexy back in March. After that surgery - I was able to go a few times but it suddenly stopped and I found myself struggling to have a BM. I felt I had to go, was bloated but it felt stuck - in the sigmoid area. It was not reaching the rectum, and I really had to strain, and change positions. I think our sitz-marker studies are similar - with a lot of them getting stuck in the rectal-sigmoid area. During that study - I had been on MiraLax, until the day before.. and I had a decent BM 2 of those 5 days! Yet - even though I went, excessive stool was noted throughout the entire colon. GI said it was CI, colorectal surgeon said it was a blockage (twisted colon) - and that the colon was like a train, and I was only unloading 1 car and not the whole fleet (leaving all the stool throughout). Anyway... at one time we discussed removing the whole colon, but because of my age (and I'm not that young) he didn't want to. After researching and reading here, I felt that the best approach - for me - was to be conservative and remove the area in question. I figure it I need to someday be more aggressive, I can remove the rest, but can't get it back if I remove it first. I think my case is different than many here, as I may really have CI (as GI thinks and I think I do to - at least some degree) I also really had a structural issue - as the final barium enema test revealed. I think having the colpopexy and rectopexy definitely aggravated this 10 times! For me now - the Miralax is totally working! I have not used a fleet or enema since before my surgery!! I'm having anywhere from 4-8 BM's a day, most of the time they are soft, little noodle like pieces but sometimes it is watery - which is most likely from what I eat..? I often don't feel that the stool in in my rectum, but get a little sensation.. that I'm learning means I need to go. There are other times, that I will feel I need to go, and have an urgency - but I never had an accident - thank goodness. You would thin that urgent feeling might be diarrhea.. but it isn't always that way.. so it is something I just need to figure out! As far as you.. I think your heading in the right direction. You need to figure out if your rectum is going to work at all, or if things are getting stuck because of the colpopexy, and possibly a mechanical issue. Did you ever have a barium enema? That was the final test that truly revealed how redundant and twisted my colon was. I am surprised that they didn't remove part of the transverse colon, as it was so redundant that the barium couldn't get past it... it may cause issues in my future, but for me, I was happy to be conservative. I think you need to keep researching, get as many tests as you can and find a doctor you feel confident in!

Rosemary, please tell me the ship is not charging you $3 per minute!! I always by an internet package which runs about .50 per minute. Seems like on such a long cruise they would give you FREE internet! Anyway - a tip in case you don't know.... log on and read the forum, and log off and type your post in a program off line. Copy and log back in a paste your post, and log off. No sense in typing online and using minutes!! It's so cold here in FL, we're breaking records! Hopefully you'll soon be cruising into warmer weather!

Jen, oh gosh.. sorry you got the bug!! Hopefully it is a 12 hour bug that will soon be gone! I would imagine in your health state that dehydration would come on quickly. Jen, have you tried zofran.. or that patch behind your ear for your nausea?

butterfly, how are you doing today? any better?

Marissa, burrrrrrr I won't complain about of Florida weather being so cold!! Do you have issues with your stomach as well that causes you not to be able to eat much? I was hoping hoping to lose a little weight from my surgery - but the 5 pounds I initially lost is almost back on! I seem to be able to eat most things.. except beef does cause a little cramping, but not enough to keep me from eating.

Janie, wow - you beat my record of a large baby. It really only takes one child to do the damage as we both know...(my first 2 were not vaginally). There is no doubt that damage to your pelvic floor was done and causing some issues that you have. Someone here mentioned that book by Christopher Lahr on constipation, and I read one of them.. and he goes on and on about damage childbirth can do and it is a major factor in our issues (can't get it out - longer it stays in - the more hard it gets and constipated we are). I really just have to try one of those Coolata's! How do you order it? Just say a Coolata? Does it come in vanilla too? Wonder what the secret ingredient is.. have you tried just regular coffee and does that do anything? I honestly think part of your problem is the rectocele you have... stool just gets stuck and trapped in that pouch.

Well.. I spent a lot of time here posting and than retyping everything again!! Hello to Amey, Hodaya, Judy. Gilda, Pelzt and everyone else!

Jenise, I had 15 of the transit markers in the ascending colon and about 10 in the transverse colon on day 5. My doctor said all markers were on the left sde....so, makes me wonder if something is wrong with the left side???? Good question I am going to ask him when I see him again. And I won't see him again until after biofeedback.

Rosemary, I have an idea. I believe you can use a laptop computer and buy an aircard and it should be cheaper than what you are paying now. Not sure if you brought your laptop though?? Surely it will be cheaper on the boat considering how EVERYONE depends on the internet.

Gilda, I think Amey who posts on here has the same burning butt too. Have you asked the doctor about some kind of numbing med to help with that? I know they definately have some scripts for that. And remember to use a wet washcloth to clean yourself and make sure your bottom is dry. I mean, dry, dry, and dry some more. Even use a hairdryer if you don't think your bottom is dry enough. Then apply your ointment. Putting ointment on a raw bottom makes it worse. I learned this trick from my colorectal doc after I had hemmroid and anal fissure surgery. He also said no toilet paper, for me to use a soft cotton cloth to clean myself. It did help.

Lizzie, hope you are feeling better today. Maybe your entire digestive tract just needs a little rest and NPO will help you to start recovering.

Hi to everyone. It is amazing (kind of sad though) how many women have a problem with relieving themselves! As I told you before, my problems started when I was 20 years old; now I am 57! Thirty-seven years is a heck of a long time to live with such problems. There were many times in my life when I seriously considered suicide. I know that sounds horrible but that's how bad it got! For years and years my doctors (and I have seen at least 50 different doctors) acted like I was crazy. They just kept telling me to drink more water, take metamucil or more recently, miralax. Because I could "go" a little bit each day, they said I was fine! I kept telling them that I could hardly ever eat or I would end up in pretty bad pain. I had a lower gi test (barium enema) when I was about 23 yr. old. It took 14 days for me to get the barium out; it was really painful and frightening! After that experience I would never consent to having another lower gi test; I was so afraid the barium would harden in me and my colon would perforate. One doctor told me (just before my surgery) that there is a way they can do this test using a liquid? (not barium) which eliminates the problem of something getting stuck. In many ways, I wish I would have had that test done before deciding on the surgery. I was so exhausted and weak though (and getting suicidal), that I said . . "just take out my colon." Actually I was going to just have a hemi-colectomy done (not as drastic) but my colo-rectal surgeon said he was afraid I would end up needing more surgery if I took that route. I had already had a small section of colon (2 ft.) taken out in 2005 and I never wanted to have surgery again after my April 2009 surgery! Also, insurance can be a huge problem and I was very worried about the expense. Consequently I went ahead with the plan for them (2 doctors involved) to take my entire colon if necessary. Anyway I now do not have pain (yeah!) except for the "burning butt" issue. Tracy, thanks for your suggestions. I have pretty much tried everything you recommended and yes, some things help. I am now ordering some, "Calmoseptine ointment" because that is really supposed to be the best "numbing cream."

I am so glad we have each other to confide in! Hey if some of you want to come to San Diego on a vacation sometime; that's where I live. I have a pretty big house so some of you could stay with me. I just think that we really understand each other and that is a valuable thing!

Gilda

Gilda,
I live on the calmoseptine ointment; just went to Walgreens and ordered 3 more tubes today. It is the best I've found; my colon surgeon told me about it.

I totally understand the entire life of constipation. Like you, I was about 20, and I went to a GI Dr. who told me to take senokot every few days to clean myself out. I started that, and it worked well for a long time, but over the years I had to use more and more. Eventually it just didn't work well at all. I had an impaction 2 years ago which made me decide on surgery. Over the 30+ years doctors just told me the same thing; exercise, drink water, etc. When I was 35 I had my first sitz marker test and the doctor told me then I'd probably have to have my colon removed and replaced with a bag, but to keep using senokot until it stopped working. Luckily, I didn't need a bag last year, but with my rectal issues I think that's a possibility in the future.

I actually had the test with some liquid instead of the barium. They wouldn't give me the barium because of my impaction. It was much easier than trying to get the barium out, but the taste was horrible, I threw up as soon as the test was over. I had to drink 2 large glasses of this brown molassas texture crap that tasted like old cough syrup. It was disgusting and made me sick as a dog, but I didn't get stopped up!!

Yes, we NEED to schedule a get together somewhere! It would be great.

Lizzie

this article http://www.ncbi.nlm.nih.gov/pubmed/19655250?dopt=Abstract says that there is a significant correlation between small bowel transit measured with the smart pill study and scintigraphy which is seen as gold standard along with the small bowel manometry for evaluating small bowel motility,

If your test is correct then it really may be a LOCAL (maybe reversible/treatable) and not DIFFUSE motility issue. Since you vomit after 20-30 min after eating I strongly encourage you to ask your doc for SMA syndrome which is obstrcution of the upper small bowel.

Quick Update:

My abdomen started filling about 4 pm and has gotten bigger and bigger. The doctor came in tonight after I had vomited three times and they are putting in an NG tube. I do not feel well at all.....having a rough nite.

Lizzie

Lizzie, just thank goodness you're in the hospital - where you belong!! Praying for you!!

Total or Sub-Total - according to my surgeon and online is the removal of PART or ALL of colon but not the rectum. They can break it down more like left hemicolon, right hemicolon, transverse or all, but medically speaking, a total colectomy is removing all or part of the colon, but not the rectum. Sub-total is the same description. When the remove the whole colon plus the rectum it's called a total proctocolectomy.

Janie, glad you mentioned the calmoseptine.. I purchased it before surgery and was very happy that I had it waiting for me at home!

Tomorrow morning is my first post op appointment - looking forward to hearing what he has to say - especially about my incision.. it's weirdly indented and I have a hard 2 inch lump in the upper part.

Case is being presented as we type....supposed to hear from FL by 1230-1pm. I pulled my NG out this am, I was dying in pain and not much was coming out of it. My surgeon thinks something, but not sure what has to be wrong with my stomach??? This was hear say from the nurse, he has never even said anything to me. I do not know what is going on. Every test  has been negative for my small bowel and even the the most recent tests too. The doctor from CC said it is completely my rectum? seems everyone disagrees. I have decided, i think, if i am a candidate for the BCIR to try it and hope for the best, I think otherwise I would regret it and an end ileo is the end result either way....

Lizzie

Lizzie, it must be so frustrating and confusing when doctors don't know or disagree! I agree with you - if CC thinks your a candidate for the BCIR, than why not give it a try. I think if you don't - you will always wonder "what if". If you do have the BCIR, do you have to travel to CC? I will be checking back later today for your updates!!

Jen, I think you have a long road left of fully recovering. Your body has been through a lot. The good thing is - you're young.. and should eventually fully recover, but it is going to take time.

I got up at 6:00 AM to get ready for my post op appt with colo-rectal surgeon (other post op for uro-gyn is Thursday!) Anyway, I go to jump in the shower - and NO WATER!!! Our pipes froze here is SW Florida! They were fine in our home, but part of the piping is out by the road and out of the ground - and that is where it was frozen. I just got home a bit ago.. and now we have water. Wasn't fun sponge bathing.. and I had to use water from our pool! LOL

Anyway, I did find out that I did have a low anterior resection, and just like Rosemary thought.. they did remove part of my rectum to do the rectopexy. He said that is probably why I have diminished feelings when the stool is there, because the nerves that sent the signal are gone. I was told I can reduce the Miralax to 2 times a day - he said to try it for a while to see if it works and than I should try again to reduce it to once a day. He said I should start putting fiber in my diet via cereals and fiber supplements. I have the go to eat anything I want - no restrictions!! He looked and checked my incision out thoroughly and he sees the indentation, but didn't feel any fluid underneath it. It has a lot of scar tissue, and he said it could be 9-12 months before it softens. I was told I was not to lift anything heavy, careful sneezing and coughing. I feel like I'm ready to get back to exercising.. but I am only allowed to walk and speed walk, or use an elliptical. No impact exercises, sit-ups or weights at all for a 3-4 more months. He said I looked great, and may feel great, however, that this surgery is not the same as many which have a 6 week recovery.. it said full recovery is ONE YEAR. I think he means internally - and getting the colon to work more normal..?

Jenise, you posted while i was typing. i'm glad your appt went well. i also still have that lump in the upper part of the incision. my surgeon said it will evetually go away. i'm almost 5 mons post op and it still looks the same.

Jenise,

Thanks for validating my take on low anterior resection.  They likely didn't tell you the side effects of LAR am I right?  Surprise.  SOMETIMES they resolve other times you get what you now have for life.

Thanks for your tip on off-line response then paste, but I don;'t know how to do that.  But on ship I have $500 credit and minutes are only 75cents per minute rather than hotel at $3 per min.

Lizzie,  GOD GIRL GOOD LUCK, am skimming these posts for your updates.  Still cold and we are well of Florida coast.  I presume it will warm up .  We had a 1 hour life jacket drill today.  Ridiculous.  Ship a bit rocky last night but not bad.

Praying for you all.  Pray I stay well.  Wish I had time to reply to you all.

Rosemary

Lizzie,

please, be your own advocate and encourage your doc to check for SMA syndrome. as I said before SMA syndrome does not cause delay in transit in total which would explain your normal small bowel studies. Severe gastroparesis can cause extensive vomiting but air fluid levels and dilated bowel loops are DEFINITELY a sign of (pseudo)obstrution. Please ask your doc about the pattern of the air-fluid levels/dilated bowel loops and their distribution; this would be very useful information.

SMA syndrome causes local obstruction in the very upper small bowel which would correspond with the time you vomit after eating. SMA also causes gastric outlet obstrcution (you can call it gastroparesis since igastroparesis is by denition a motility disorder of the stomach. With SMA syndrome the stomach has normal motility but is unable to emtpy due to a more distal mechanical obstrcution) since the stomach can't empty any more into the first part of the small bowel where the superior artery compresses the gut lumen.

If your doc is a good doc he will be fine with hearing your suggestions.