TOTAL COLECTOMY PART 28

POOR JEN! She announced on facebook tonight that she is back in the hospital. I am not sure of the circumstances.  Hopefully, she will be able to update us soon.  If I get more details, I will let you know. For now, please pray for her and her family.  This is so hard on her family.

Amey

How do you find Jen on facebook?

Jenise,

I just went to Google.com and typed in Jennifer Page Cartner and up came Jen's Facebook.

I also just realized what this means. If I go to Google and type in my name my face book will come up! Kinda scary. Everything is linked to everything on the net. Good for keeping in touch, but privacy issues, oh, my! Anyway, that would be an easy way to get in touch with her. I cannot find the link Lizzie gave to Jen's face book on the previous pages. Maybe previous pages drop off as we create more pages on this thread?

Rosemary

Hi Tracy,

I was wondering what impact Jen's experience(s) would have on others contemplating surgery. Remember each case is different. I know if I'd been on this forum in 2006 and all this was going on I would have just kept my "problem." So what if I pooped a ton every day and it took 2-4 hours. Who cared but me? I was going, and going, and going. I wonder if it was not my thinking about it too much then seeking help that lead me into trouble. But it made sense to want to keep my full time job and not be in the bathroom 2-4 hours every single morning. It was like having a job then going to a job.

Glad to hear from you. The cream, more biofeedback, and Miralax sound like a plan. Do keep in mind though, if you have to have the ileostomy, if done laporoscopically, it would minimize adhesions. Plus seems like creation of a stoma well-done would actually be techically easier than an anastomosis. It is when colon parts or small intestine to rectum joinings (anastomoses) are made that leaks and strictures can happen due to poor technique (like I'm gathering in my case) or they simply happen due to unknown reasons (like in Jen's case). So do try your conservative measures, but keep in mind the ileostomy is still possible to do safely.

With upcoming surgery for a few others though, we need to think of all the successful cases of people who have either had them and moved on or are keeping in touch with us to remind us that success is possible. I sort of think of myself as a worse case scenario, but so far I guess I'm not, I have an ileo that is working and need to remind myself to be thankful and take it one day at a time. I pray for Jen. Her suffering has given me new perspective on my issues.

Great to hear from you. Have been thinking of you.

Rosemary

hi all, i saw the update on FB too and was very sorry to read it   poor girl. Jen, if you're reading this, i hope and pray it's nothing major and you feel better soon. we all love you and here for you, honey! Jenise, well, i'm ready to try anything to help me with my on going constipation. he said that magnesium can help with the electrical streem from the brain to the gut. well something like that.. anyways, about showering, i showered every day while in the hosp. after i had the infection in my abd and they had to open the bikini line incision, i had to take as many showers as i can. they said at least 3/day, in order to help the wound heal, but that was too hard for me and i showered twice/day. i never washed my hair though the whole 18 days in the hosp.. was really scared of getting a cold with all the air conditioning there that were making the whole ward very cold, i have sick lungs, so i couldn't take that risk. i hope and pray you don't have complications, honey, and everything goes smooth for you. Marisa, i hope they find the source of your bleeding, though i pray it's not chrohns. keep us updated. Lizzie, it's all so interesting and i can't wait to hear what CC have to say about all of this. i pray they're able to figure this out. i also don't understand why when your intestines are connected you feel nautous and vomiting and while having the ileostomy you didn't and felt better and could eat better, i mean the stomach is one thing and the bowels are another, and if your stomach is doing o.k according to the stomach empting test, then why you vomit so easily? it's so frustrating.. i'm always praying for you, honey. Sarah, thaks for the links. it's very interesting. we've discussed this issue once on this board, when Lizzie's surgeon brought it up, but it seems it's not applied yet or something, or what exactly was the reasong he didn't do it after all, Liz? Rosemary, how interesting you're still getting rectal pressure after eating. i thought that once one has a perm ileostomy they don't feel anything down there.. it's probably making you very uncomfortable, isn't it? does it go away fast as it comes, or do you have to feel it for a long time after eating? Tracy, good hearing from you. you're right functional probs like anismus don't have a cure yet, but i hope and pray medicine finds one soon! we all need a miracle! Janie, how's your thoat? well i hope all of you who has cold wheather are surviving it. here in israel it's really nice and warm, but we DO need some rain and still non! hope everyone is well.  

Rosemary, thanks for the explanation about the rectal-brain connection. one dr once told me about the nerves in our gut and how significant they are. of course all our body parts are connected to the brain, but i was under the impression that once the rectum is disconnected, the electrical streem is gone and therefore the feeling is gone too.. well guess i was wrong. our bodies are so complicated, huh..? do all ostomates feel it like you? BTW, Jenise's surgery is on this coming wednesday, the 9th, hopefully with good news following.

thanks so much for the update on Jen, Lizzie! i hope nothing is going on internally. i'd also say TPN is most needed for her. send her my love and i hope she gets better soon. so concerned about you vomiting, it sounds aweful vomiting after each time you eat. i never vomit, even when i'm mostly constipated. i can feel terribly full and bloated and have terrible belly aches and cramps, but i never vomit. i can feel extreme pressure in my lower abd and pelvic and it won't move into the rectum. it feels VERY heavy and painful and it's hard for me to move around and it can last like that for days. for me it seems like the prob is also for the stools to just get into the rectum. i told this dr i saw on wednesday that i think that even if they took everything out, the smalls and stomach and attach my esophogus to my rectum, i'd still be constipated and the stools will still have trouble getting into the rectum.. he was laughing so hard on this one. he just loved it.. ha ha. i wonder what CC have to say about the sacral nerve, or as i remember corectly, your surgeon wanted to try it, but CC said it's not an option..? maybe it's something medicine is still working on and it's not really used yet. but i hope they come up with SOMETHING some time SOOOON!

http://en.wikipedia.org/wiki/Superior_mesenteric_artery_syndrome
http://www.medscape.com/viewarticle/410569

Mostly patients have symptoms 20-30min after eating which you have too, don't you? This is the time food normally reaches the first part of the small bowel, the dudenum. So if your stomach is fine, this could be another reason for your projectile vomiting.

Hello all,
Wow, I'm gone for a couple days and we're pages ahead! I'm so sorry to hear about Jen; I hope this is her last obstacle and she can get home in time to enjoy the holidays.

Hodaya,
My throat is ok some days and really bothers me other days. It's not just a throat thing, it's a neck thing too. I also have had night sweats (I thought I was over hot flashes) and just don't feel great. The ENT thinks it's thyroiditis and I'm going to continue with what he told me to do for a few more days, but if it's not better soon I'm going to my internist. He's the best doctor, and I'm sure I'll have some bloodwork done. If it's not one thing it's another! I'm still using miralax and still doing ok. I've had to use enemas a couple times this week, but I think I'll always have to do that. I can live like this. The rectal pain was the worst part of everything and that's so much better. After I wrote the other night that I could eat anything, I had a bad day the next day!! I'm never going to brag about eating again. I really do need to watch it a little better than I have been, and I've gained about 3 or 4 pounds back. I don't want to gain anymore, and I'd like to lose those 3 or 4!

Jenise,
There are no guarantees about who will and won't have complications after surgery, but your doctors sound like they've done everything to make sure this is the right thing for you. I pray you'll do well. It wasn't any fun at all, and for a couple days I truly felt pretty lousy, but that's just to be expected after any major surgery. I hope you're lucky like I was as far as recovery, and I really hope you won't have the pelvic floor issues that I have. Be sure to have your husband keep us posted if you don't feel like posting. I had trouble with my laptop in the hospital and couldn't post, but by about the 3rd or 4th day, I would have been able to. Also, enjoy the pain meds...sometimes it just feels good to sleep!

Lizzie,
I'm so so so sorry you're still having so many issues. You have been through so much and you're so young to have to go through all this. I truly pray CC will have some answers for you.

Tracy,
If you're able to go regularly with miralax I really would consider putting surgery on hold. If miralax had worked for me, I wouldn't have gone the surgery route. I was having to take massive doses if senokot every week to go, but miralax didn't help me at all. As it turned out, I have to take miralax every day now in order to go, so even after surgery, I'm still about like you! It would be great not to have to take anything, but at least this works. I think you're smart to take your time making this decision.

Marisa,
Hope you're feeling better and the surgery gives you some answers. When is your surgery again? I hope I didn't miss it!!

Rosemary,
Wouldn't it be great to all meet? I would love it! Where do you live again? I know you've said, but I've forgotten? You live in the northeast, don't you? It would be great to have a get together one day!

If I've missed anyone, I'm sorry. Hope you are all doing well, and getting ready for the holidays. No snow here in sunny Florida.....actually rainy Florida the last couple days!!

Janie

peltz, thanks for the info. the option of having an ileostomy is always in the back of my head, but i assume it won't be before i've tried everything else. as a last resort i would definitely turn to laxatives and as long as they help, then i'll stick to them, but if all options are axhausted and i'm still having trouble, then there will be no other choice for me. hard decisions.. Rosemary, ha ha.. yeah, i'm trying to keep up a good spirit, cuz if i didn't, i would end up crying all day and night, which i did up untill not long ago. and i can't say this is not depressing. i just honestly don't know what else to do, think and how to cope with the frunstration of suffering a chronic condition that never goes away.. meeting all of you would have been wonderful. it could be great if we could live close by to each other. but i'm thankful to have found you guys at all, so even behind the screen, you're all truly like family to me. thanks for the info about the rectal pressure even with a perm stoma. maybe it would be best if it could go away completely for you too. Janie, poor thing.. so sorry you're having such a hard time and not feeling so good. it's a good thing though you have such a good intenist, it's so important. i hope your throat is better soon. i am also thinking that when all options are exhausted and there's nothing else to do besides taking laxatives, then i'll go for it, but i guess that even when the laxatives work, it's not always perfect and we'll always have to be careful with what we eat. you were not bragging, Janie, you were just being happy to be able to eat normally, to eat normal food.. is that too much for us to ask...??? it's only natural to feel that way and i'm so so sorry you had to be disappointed again, honey :( everyone, does sugarfree chocolate help with bms? i ate sugarfree chocolate friday night and had such MAJOR diarreah!! kinda reminded me the way i was in the first few weeks post op. i'm gonna buy some more of this today and see if it works again. what do you all think? well i'm late for work, bye for now.

Good Morning!

Weekends are hard to keep up with everyone here! I do love it when we are all able to stop in and catch up with each other!

3 DAYS LEFT!! Oh my... thank you all so much for your thoughts and prayers, it really means the world! Keep those positive vibes coming my way! I need to try and tell my husband how he can update you.. he is not very good with communicating on computers! I enjoy a steak dinner last night, my last reall meal.. and Tuesday I start clear liquids. I stopped all medications including the MiraLax and now I haven't have a BM in a couple days.. and no urge to have one... maybe I better do something today to start things moving. Even though the said no bowel prep.. I'm sure they don't want it five days full..??!!

Rosemary, it means a lot that you feel my surgeon(s) have been more then careful! I know (and you have good reson to be) skeptical of doctors. I do think I have been through every possible test, and knowing Amey knows my doctor personally - and only says positive things, does give me comfort! Yes, it was my barium enema pictures I posted.. I still look at them from time to time and still can't figure out where the descending, transverse or sigmoid colons actually are - they are all clumped together on the left side! I find it so interesting that you still feel rectal pressure.. almost like a phantom feeling an amputee would have..?

Hodaya, thanks for sharing info about your showering at the hospital. I remember all of us being so worried about you... I just wish things were perfect now. Why did the doctor say it wouldn't matter if your esophagus was hooked to your rectum.? Was it because of Anismus? I hope the magnesium works, but it does suck to have your whole colon removed and still be constipated! Are you taking the magnesium now? How are things at your job now.. are they giving you grief? You hide your sadness and depression from us at times.. but do know we are here for you. You have really been a wonderful sister to us on this site!

Lizzie, thank you for your thoughts and prayers! I really am in better shape then I have been in a few years. I feel healthy, so I hope that does help in recovery. I feel so bad for you with your vomiting episodes! Something is going on and I just hope CC has the answers! You can't be getting stronger with these ongoing issues. I know it's a long drive for you to go to CC, but that is where you need to be.

Sarah, you have some really good links and information.. hopefully they will be helpful for Lizzie.

Janie, I'm focusing on both you and Judy and hope that I'll be joining you in the no complication side! I'm glad your rectal pain is better, but like Hodaya, I just think it sucks that you still have to use an enema now and then. I really, really can live with taking MiraLax or Fiber or some sort of supplement.. but I want to stop the enema stuff! We sure have been getting a LOT of rain here in our sunny spot of Florida! Sun is shinning today, and I'm glad! Our puppy does his business outside, and all that rain was hard to get him to go! I think you right.. if you're throat is not feeling any better, time to seek a second opinion with your internist.

Judy, if you check in today - just wanted to say hi, and hope your Kidney stent is okay for you. I know you have surgery planned over the hoilday break.. best wishes!

Jen, sweetie, I feel so bad for you! I know it must be so tough on you, hubby and children. Hope you and they are all getting through this okay. Check in with us as soon as you can. ((HUGS))

Rosemary.. another question, is splenda considered a fake sugar that will work? I know it's different then equal or other ones..

Jenise,

BEST WISHES ON THE 9th. OMG! THAT PICTURE IS AMAZING! Yes, as skeptical as I am of gut surgeries based solely on my own experience, even I have to say I think removal of that tangle could only help things! My goodness; it's amazing you can poop at all. This is clearly evidence that you are doing the right thing. You must feel as good as one can feel going into surgery. Even I'd be counting the days if I had this tangle.

It was interesting that when I was given the gastrograffin enema AFTER the 2006 surgery (equivalent to a barium enema xray), I had absolutely no colon tangles like you do. By then I was, of course, minus my sigmoid. But what remained looked like the basic anatomy book pics, sooo adds to the evidence that very likely I had no issue with the sigmoid either. One of my GI's said usually if no redundancy of any part of the colon, then no redundancy of any other part either. All info I got too late.

How on earth did you get this pic onto this web site? Was it on a DVD and you somehow put the DVD into your computer then clicked and dragged this pic into the above post? You have some computer skills that I need, so after you recover, give me some lessons OK?

Yes, ANY fake sugar including Splenda has great laxative properties. UNFORTUNATELY for me I did not discover the long term possibilities of this until I got the scare story about the sigmoidocele (that wasn't), By then I'd already experimented with the Sucralose cookies. They did work and I should have just kept eating them. But the big scare story (from 3 colorectal surgeons) that my sigmoid was blocking off my rectum unfortunately overcame me. Even now with an ileostomy and my rapid small bowel transit anyway, if I even have just a bit of fake sugar I am filling bags in no time.

So after your surgery, even if you need a bit of a push, check into any of the fake sugars. They all end in -ose. fructose, sucrose, lactolose, sucralose, galactose, high fructose corn syrup, the list goes on. There are some cream life savers on the market that have some fake sugar in them. They are sold in a black bag. Even the bag says "may cause diarrhea if eaten in large quantities." Unfortunately I did not discover these until after I had an ileostomy, then I sure wouldn't want those effects. Had I found those in 2006 I could have just lived on them

If the docs tell you how on earth your colon got all pushed to one side and so tangled tell me, I'm curious. WIll keep thinking positive thoughts for you.

Lizzie,

If CC cannot find the cause for your projectile vomiting even with all the good questions Sarah (Peltzier) gave you to ask, I can recommend Mayo CLinic in Rochester Minnesota's CT Entercolysis test for finding small bowel adhesions. As I did not have the other conditions sarah mentioned, I have no idea how those are tested for but I think her links explain it.

The CT entercolysis test is not pleasant, but can be tolerated and WILL give you answers. They put a very narrow NG tube down with good numbing spray in your nose and throat. Then they get the flexible tube into the top part of the small bowel that leads from your stomach. The only icky part is that they have to put a narrow wire down through the NG tube to guide it out of the stomach into the top of small bowel otherwise the NG tube just coils up in the stomach... Then they withdraw the wire. This is all done under fluoroscopy so they know where they are going. It is a radiology doc who does this; he's done thousands and thousands of these and is excellent and very comforting. Then they put gastrograffin down the NG tube. It is OK, it just feels weird to have something hit your small intestine that you have not swallowed! Then they just do a CT scan and roll you around a bit so the gastrograffin outlines your small intestine. Then for me they did some IV contrast that did not do me any harm. I think it was some iodine, but I don't remember. Any small bowel loops that do not distend when the gastrograffin contrast goes through them are the loops that are narrowed in with adhesions. Docs told me at Mayo it was too dangerous to lyse these adhesions free and I'd just have to live with the obstructions. BUT I brought the DVD of this test back to Lahey CLinic, here in Mass, and my colorectal surgeon successfully lysed the loops of small bowel out of the adhesions, put in the adhesion barrier, Seprafilm, and made me the ileostomy stoma. So I regained the ability to eat and so far anyway, everything is flowing; it is 2 and a half years now So I highly recommend this test at Mayo If CC doesn't know what's going on.

After this test you just have diarrhea due to the gastrograffin coming out. The only after effect I had was a pressure feeling in my throat for a day or so from the guide wire being passed through the narrow NG tube to get it out of my stomach into my small intestine. I was determined to find the cause of my problem. Years ago if anyone told me I'd someday be having this test I would have freaked. BUt if in need of diagnosis, one can tolerate amazing things. The technicians at Mayo are fabulous which helps. So good luck to you too Lizzie.

Rosemary

Rosemary, once I saw my own pictures, I did google Barium Enema.. and pretty amazed at my pictures! My GI said it was from mostly because of years of constipation that it became redundant and twisted most likely because of the C-sections... why it prolapsed I don't know, but I guess it is more common in women, if it is redundant and after childbirth.. which fits me! I really think my surgeon was extremely cautious.. he didn't want to operate without ruling everything out, and therefor sent me for the pelvic MRI and then after seeing that.. he still wasn't sure and sent me for the barium enema. I was at first upset that he canceled my first surgery, but shortly after, I knew it was because he is a good surgeon, and didn't want to make a mistake.. so I do feel confident going in with the best plan. Knowing that my case was brought up in a conference.. just really makes me feel I'm making the right decision. It really does look like a tangled mess, and I'm so curious to know if this will end the flat poo!

I have requested copies of all the tests, and I have them... I have all the reports except from the 2 pelvic MRI's. They are on a DVD, and the barium enema has a movie clip and still photo's, and I was able to copy and save the pictures to my desktop, and then I uploaded them to my online pictures (google's Picasa) Once they are online - then it was easy to put them online here. You need to use the long reply (not the quick reply) and click the [IMG] button and then past the link to the picture and click the [IMG] button again.. and it's there!

That's really good info on the diet sugar.. I'm sure I can find lots of things with Splenda!