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TOTAL COLECTOMY PART 31

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Posted 1/28/2010 8:36 PM (GMT 0)
Rita,  (Lizzie's MOM)

Thanks so much for the update.  Glad the actual surgery went well, but WOW we will pray about the fluid issue; my WORD!  I'm the one trying to keep up with all this from a cruise ship (am doing this with an ileostomy...so far so good, but we're all praying for eachother no matter what our issues)  My prayers continue for Lizzie.

Jenise,

You're right 12 hours not 24 for Liz's surgery (did I say that?)  My brain is totally on vacation.  I'm in another TIME ZONE for sure :-)

I CAN TELL YOU EVERYTHING YOU NEED TO KNOW about STICTURES!  That was my first complication from my (in my case, unneeded sigmoid colon resection.)

My stricture developed 2 weeks post-op but they can develop anywhere from soon post-op to a year post-op.  My symptom was extremely small thin bm's VERY frequently and on-going.  Little strips would come out in my underpants even as I walked and I was in MUCH pain as stool was moving through my colon with it's usual speed (as I had no colon transit issue) and it could not get out.

DO NOT WAIT!  Call your surgeon and tell him what is going on.  You will need a Gastrograffin enema xray.  DO NOT LET THEM USE BARIUM!  If you do have a stricture at the joining (anastomosis) the barium will stick in there above the narrowing and concretize.

If you have a stricture it will show on the xray and will also show stool piled up above the stricture.  My 2006 original surgeon saw this on xray, received the report that my colon had narrowed in to the diameter of a pencil (4 millimeters) and did nothing.  I'm sure your doc will deal with this.

I had to then go to Boston for Balloon Dilations.  They give you Fentanyl and Versed and go in with a sigmoidoscope and inflate a balloon at the narrowed part.  Be sure they do the inflation for about 3 minutes not just a momentary inflation.  You will likely need a series of these. 

In my case, the second dilation got my colon out to it's original diameter of about 25 millimeters, but the scar tissue (which is what makes the stricture) then spread along a 4-inch stretch of colon making it scarring and no longer muscular (meaning unable to contract and move poop along.)  This is only one of the complications that lead to me being an ileostomate.

So call your doc now.  (I'm not saying you will become an ostomate, but do not wait.)

Best of luck, Rosemary

 

Post Edited (esoR) : 1/28/2010 1:40:33 PM (GMT-7)

Posted 1/29/2010 1:06 AM (GMT 0)
Janie, I did lose alot of weight with my colectomy and another 25 pounds when I was in the hospital last summer. I looked anorexic, but am back to my weight from the colectomy and it's not fluctuating much.

I had to see my surgeon today. I had an obstruction in my tube and neither my husband or I could get it out. My surgeon used a huge syringe and squirted water in, but couldn't pull anything out, either. Then he used water with peroxide, and that didn't work either. So he tried more water, and then put a metal rod thru my tube. Nothing came out, again. So, he sent me home and told me to flush with coke. So, my husband flushed my tube with coke and now we're waiting. I'm supposed to call the surgeon tomorrow and let him know what's happening. My husband and I are terrified. We've always been able to flush out stuff before.

My husband is on edge. He held me the entire time that my doctor worked with me. My husband gets frustrated when he can't help me. I know how he feels, but can't help him. We have no control over anything that's happening with me.

Hodaya, the good news is that my tests so far are looking good. Hopefully, I will be healed enough in June to have some kind of surgery. I asked my surgeon about the k-pouch today and he didn't have anything to say about it, except that pouchitis was a big worry with it and many doctors didn't practice it anymore, because many times it altimately ended up with an ileostomy later. He said that I really needed to speak with Dr. Wexner in March, and really listen to what he has to say. Dr. Wexner is the president of a committee for all of the colorectal surgeons in the United States and is the best surgeon around. I'm glad to be in good hands, whatever happens.

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10
Posted 1/29/2010 1:46 AM (GMT 0)
Lori,

I so hope your obstruction clears up! Can you eat at all while waiting? That must be so terrifying. That's great news about your tests so far, we'll all pray that you'll be able to have your surgery as planned. I'm sure Dr. Wexler is the best doctor to determine exactly what surgery you should have.

Rita,
Thanks so much for giving us the update on Lizzie. We all love her and are so worried about her. Please let her know how much we miss her and please keep us posted.

Janie
Posted 1/29/2010 3:10 AM (GMT 0)
Rita, thankyou so much for updating us on your precious daughter. You and your family are so lucky to have her. Im sure you take such good care of her. We all on her love her so much and want the best for her. She has gotten all of us through our own trials.

Hodaya, you need to let us know when you will be going to CA. Then we could all meet there. I am going in April 9-11 for a wedding.

Kristen, how are you feeling. I also had those rectal cramps. They feel like you are pushing a baby out or something. Hot baths were the best. Thats about the only thing that helped me.

I have gained an amazing amount of faith this past month. I am overwhelmed with this feeling that everything is going to be ok and to stop stressing so much. And eversince then, I have been feeling pretty good. Physically and mentally. Just hope that it will stay that way.

love you all soooooooooooooooo much!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Posted 1/29/2010 10:46 AM (GMT 0)
Lori, poor thing.... has the obstruction cleared yet? you probably can't eat as long as it hasn't clear, can you? oh i'm so sorry you're going through all this, but i'm glad the tests showing you can move on to the next step on June. BTW, why does it have to be June, why not sooner? just a question. i'm SO glad to know you're in such good hands, dr Wexner sounds like the best. i wonder what he'll say about the k pouch. Jenise, have your bms improved yet? if not, then call your surgeon. but for now try to eat more soft-liquids than solids, also keep it low fiber diet for now, you need to keep your stools liquidy. pls keep us updated. Marisa, oh i would LOVE to meet all of you girls some day, i feel you're all like family to me. i don't have a plan so far to go visit in CA, but i really hope i'll be able to some day. i'm glad you're feeling better!! :) isn't faith great? cuz when you have faith you know that all that happens, happens for a reason and for our own good, even if sometimes it seems it's not. love you honey!!! Kristen, how are you? is your rectal pain better? to those of you who don't have FB, Lizzie posted she received a first blood transfusion. that's good and i'm sure it'll help her feel a lot better. i was too with about 7 hemoglobin at the hosp, i got 2 blood transfusions and within couple of hrs felt totally like new!!  well, that's all i know for now. i hope Lizzie's mom can update us soon.
Posted 1/29/2010 5:10 PM (GMT 0)
Hoydaya, thanks for the update with Lizzie.  My prayers are with her, also.  She really is a wonderful lady and friend.  I miss her updates very much, and hope she can post soon.

You asked why June for surgery?  Dr. Wexner said that he wouldn't operate until a year since my last surgery had passed, and my small intestines had a chance to heal.  He said that it was critical that my small intestines be healed, or surgery could be a catastrophy.smhair

 

Janie, I still have my obstruction and am mostly just drinking liquids.  I'm not hungry, just crampy and have a bad headache.  My husband is out of town and will be back in 3 hours.  I've left a message with my surgeon's office, but haven't heard back. confused

 

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10

Posted 1/29/2010 7:57 PM (GMT 0)
ugh! I lost my post!
Posted 1/29/2010 8:14 PM (GMT 0)
Lori, I will be praying that your obstruction clears soon. You have to be very scared about this. Please let us know when you here back from your surgeon. Thank you for the information on the fistulas.

Rita, Thank you for updating us on Lizzie. Please let her know I will continue to pray for her!

Hoyada, I am so glad Lizzie got her transfusion and this will give her more strength. I am praying for much better days ahead for her and that the fluid goes away quickly.

I am doing okay, but still having the pain sometimes. Hopefully, when I can get into a hot bath that will help. Does anyone know how long post-op you have to wait to sit in the tub?

Jenise, how are you doing? Have you found out anymore about the stricture?

Marisa, I love your positive attitude and I do believe that is very contagious!

Thinking and Praying for everyone!

Kristen
Posted 1/29/2010 8:33 PM (GMT 0)
I just called my surgeon's office and the nurse told me that I could take a bath now and that it will help the muscles to relax in the rectum. Thank Goodness!
Posted 1/29/2010 11:37 PM (GMT 0)
My husband got home and helped me try to flush out my tube. It finally became unobstructed and is working great now. I was so afraid, but my surgeon's office had us flush out my tube with coke and now my leg tube is working. Thank goodness!

Also, they moved back my test on Monday. I have to be at the hospital at 7:30 in the morning for a fistulagram. So far, my test results are looking great and my family and I are so happy with that news.

I keep telling myself that March is coming and soon will be here, and I'll get some answers from Dr. Wexner. For now, I just have to be patient, take my tests, and hope for the best.

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10
Posted 1/30/2010 12:32 AM (GMT 0)
Butterfly, I am so glad you got rid of the obstruction. I would of been terrified! What do you think caused it? Because if it was some kind-of food then you can be sure not to eat it again!

I was so relieved to hear about Lizzie. I knew the recovery would be difficult, but it should get better as the days go on.

I have had a horrible week....been terribly constipated. My stomach has hurt so bad I almost could not function. I don't know if I can continue to live like this....I am still miserable and I can't get anything to move. I have had cramps, like my intestine is trying to push the poop through, but I still can not go. Miralax has not worked either. I have to work tomorrow and then I will take half a bottle of miralax. I have barely ate for 3 days because of this issue. I wonder if it is impacted up above the rectum? I even tried enemas and they did not help.
Posted 1/30/2010 12:42 AM (GMT 0)
answers4meTDR, I have a tube leading from my small intestine thru my abdomen and ending up in a bag velcroed to my leg. My surgeon believes I had stool that got hard in my small intestine and the coke helped break it up and ended my obstruction. You're right though, alot of foods I cannot eat, because they get stuck in my tube. I would like BCIR surgery, but am very cautious about using a catherter, because they're not any bigger than my tube and I don't want to always have to worry about obstructions.

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10
Posted 1/30/2010 12:44 AM (GMT 0)
Hodaya, have you seen anymore postings from Lizzie on FaceBook? I am so worried about her and miss her postings. I hope that she is getting better and is happy about her decision.
She has been thru so much.

butterfly
Posted 1/30/2010 1:43 AM (GMT 0)
Hi Everyone,

This is another update on Lizy.

She has pneumonia and possibly a bladder infection.  They are giving her an antibioyic, she is also getting another blood transfusion.  They have stopped her TPN and she is also getting a higher dose of heprin for a possible small blood clot near the sight of the PIC Line.

Liz does not have a pulmonary embolosm, but is still quit swollen and has had a rough day. She is feeling better this evening.

The good news is that her K-Pouch is working very well.

Liz sends her LOVE, you have all helped her so much.

Love,

Rita(Lizzy,s mom)

Posted 1/30/2010 4:05 AM (GMT 0)
Hello everyone, I am so happy that it is the weekend. It has been a really long week. I finally asked my boss to cut my hours. So I will no longer work on Tuesdays. I think this will help my mental status!! It was just getting too much.

Kristen, that is so great that you can take a bath now. That was the best thing for me. It felt so so good. Those rectal spasms are the worst. It reminds me of giving birth. But the feeling never goes away.

Thanks Rita again for Lizzies update. I hope the pnemonia gets cleared up soon. Good news that the k pouch is working. There has to be a light at the end of this tunnel for her. Are you able to be spending a lot of time there with her?

Well, better go for now, love you all
Posted 1/30/2010 2:24 PM (GMT 0)
Rita, thanks for the update on Lizzie! I was able to read it when you first posted it - but have had out of town company and no time to sit and respond! So happy that she is out of surgery - and praying for her to have a quick recovery.. poor girl has been through so much! Hopefully - each day from here on out - she'll improve! Out of all her struggles, it is wonderful news that the k-pouch is working!! Lizzie is my daughters age.. so as a mom, I know what you are going through as well. Hang in there and tell her we send our love to her!

Marisa, faith is a wonderful thing - isn't it? It is so nice to know that we don't need to be in charge of things.. that we can hand it all over to God and just let him take care of things! Keep the faith! Great news about Tuesdays off!!

Butterfly, thank goodness you were able to unclog the tube!! You sound like your hubby is a gem.. thank goodness! I've heard things about coke.. being powerful 'melting' things!! It's amazing we drink it! Wow.. wish you luck on Monday with the fistulagram... what exactly is that and what are they looking for? March is just around the corner for you too! It feels like such a long wait when we are for help and answers.

Tracy, what is the next step for you now that you have had all the tests done? Hope you're feeling better.. it is just an awful feeling to live that way!!

Kristen, I bet that bath felt wonderful!!!! Hoping it also helped with the pain you have been having...? Overall, how do you feel post op? Did you have open or Lap? I'm concerned that they didn't take the whole colon out.. but on the other hand.. I'd be concerned if they did since some ladies here still have issues!

Hodaya, did you eat those baby carrots!? If not, they should be fine - as carrots don't really have a skin (like a potato) I was n the store yesterday looking at the bowel stuff, and I noticed that had some digestive pills, and the ingredient was listed as Magnesium. I know you were waiting for your sister to send you the supplements, but I wonder if your stores would have this?

Rosemary, I just can't imagine seeing the world like you are! Do you get off the ship at each port? My cruises are usually just 7 day's and I always enjoyed way too much food.. and by day 7 - I was almost glad to get off so I would stop over eating! I would imagine, that on a long cruise - food is not so tempting.. then again, I know you are also forced to choice wisely. Thank you for all your stricture info.. I wasn't sure you'd be able to respond.

I'm just nervous.. and things have changed in the last 10 days... 3 weeks ago, I thought all was fine and I was a success story.. but now I'm worrying that something is going on! I'm still taking the MiraLax, my stools are soft.. I was able to previous feel my stool move into my rectum, now I am having that stuck feeling again, and I have had to use my fleet liquid glycerin. I'm bloated and I just don't feel like I'm going as much as I need to.. and when I go, I often have to make return trips 2 or 3 times to go a bit more (never a lot) I use the fleet, but still not much comes out, it is soft - not really formed, and the shape is thin.. but not pencil thin.. (sorry TMI - maybe thin as a big magic marker!) After I use the fleet, I'm feel protrusion - which I assume is hemorrhoids (that never bothered me before) cause I had the rectopexy - it can't be the rectum! Also, after the fleet - I have terrible rectal pressure - feels like I really need to go, but nothing comes out - it subsides after 30 minutes or so... I just want this to be done with.. I don't want to have to go back to the doctor and end up being poked and having more tests!! (plus - it's a new insurance year - and I'll have to start paying all over again). I don't want to!! I can have a BM.. if I make it very soft, but I'm positive, if I didn't drink the MiraLax, MOM and use the fleet - nothing would come out. I'm also straining more now then I was 3 -4 weeks ago. I really hate this and just want to ignore it.
Posted 1/30/2010 4:00 PM (GMT 0)
ok so last night started getting stabbing pains to left side of belly button. Took 2 vicodin last night and it didn't help. I have constant pain there and when I move around it is really bad. I have taken two more vicodin this morning....heating pad on stomach still pain. Now I am still eating, drinking, and pooping so far. Should I be worried.....what the heck could this be. The pain is quite significant. Trying to stay positive since I am not puking and still going to the bathroom. It also hurts really bad when I push on the area....any ideas????

Hope everything is ok because I live in NC and we are in the middle of a major snow/sleet storm....do not even want to think about getting to a hospital.

Jen
Posted 1/30/2010 4:44 PM (GMT 0)
Jenise, I am sorry that you're having to resort to laxatives, again. It seems like everyone on the posts are having problems after their colectomies and resections. In August 2007 when I had my colectomy, nobody was having any problems. I don't understand what has happened.

I don't like these tests either. I'm not really sure what exactly a fistulagram is. I started a post on here, asking if anybody has ever had one. I think basically it's to make sure that my 3 fistulas have healed. I know that they start and i.v. and give you meds to be comfortable, and someone has to drive you home.

Jen, I hope that you are alright. You said that you're in a snowstorm, but can you call your doctor and talk with him or his nurse? You sound like you're in quite a bit of pain and that isn't good. I hope that your pain leaves you soon.

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10
Posted 1/30/2010 6:13 PM (GMT 0)

Rita,

Thanks for the Lizzie update.  PPPOOOORRR Thing.   Am at least glad the K-pouch is working.  She is young and otherwise strong so am in hopes she can kick ALL these post-op issues.  I knew the longer they let her go with her problem, the harder her recovery would be as she was so worn down. Glad you called the State and got things going.

Jenise,

I hear you that you don't want to deal with all the poking and prodding, but DO NOT postpone getting this possible stricture evaluated and dilated (if it is a stricture).  The longer you wait, the higher your chances that the dilations won't work and the need for possible reoperation or ostomy.  So get going girl!  (I'm just using TOUGH LOVE on you; I DO understand your predicament as I lived it.)

As far as on-board food goes, I'm learning all the stuff NOT to eat!  I just had chocolate melting cake and am now outputting bag after bag.  I gotta stick to what works.

Butterfly,

Glad the Coke worked.  A "normal" ileostomy will be a piece of cake compared to what you have now.  You still need to be careful, but not as careful as you now have to be. I can coach you on what to eat and what NOT to.  I'm learning all the NOT's.

We are on a sea day.  It is VERY rough.  Then we have 3 port days in a row.  Soon the Chilean fjords.  I gotta continue to stay "well" AND avoid all the foods I know to avoid.  Santiago was super yesterday.  GLAD I did not do the Manchu Pichu Inca Ruin side trip.  64 of our passengers and 600 other tourists were trapped in mud slides and had to be air lifted by helicopter out of there. THEN our cruise line got our passengers hotel rooms and rooms at monestaries. BUT they got food poisoning and all got sick.  Then after 6 awful days they returned to the ship yesterday looking none the less for wear.  I would have had dehydration issues and would likely not have brought enough supplies as it was just an overnight trip.  SOOOOOOO glad I did not go.  It was $2000 more per person, so glad the price turned me off.

Rosemary

Posted 1/30/2010 6:18 PM (GMT 0)
Jen,

Good luck. Storm or not call your doc. Glad you are still going, but unusual pain not to be ignored. The storm will clear eventually. In the meantime, I think you need medical advice. Rosemary
Posted 1/30/2010 7:27 PM (GMT 0)
Rita, thanks so much for keeping us updated!! i'm so sorry to hear about all the complications Lizzie is going through.. i hope it all clears up soon. i'm glad she got another transfusion though, that's great. did it help her feel stronger yet? great news about the k pouch!! Jen, CALL YOUR DR!! a sudden pain like that is concerning. don't wait! Lori, oh that's great news the obstuction cleared out and you're feeling better now. so i see why it can't be before June, well as you said, just need patience. actually, not much longer left till March, hang on, so glad the tests results are looking good so far, that's very encouraging. good luck with the test monday, tell us how it went. Kristen, i hope the baths help your rectal pain. keep us posted. Tracy, poor thing, i know what it's like to feel so impacted. i used to not eat for days and days and lost a lot of weight. well even so i feel my colectomy is not as succesful as i hoped it would be, i must say i still feel much better than before the surgery. i don't have the HORRIBLE pain i used to have, i don't feel as impacted as i used to. i do feel impacted, but not as it used to be. i can eat more than before surgery and still feel o.k. Marisa, Teusdays off, sounds great to me! Jenise, yes i ate the baby carrots and so far so good :) i think they are o.k for me. my mom should be back from San Diago in 4 days and i'll have my supplemts. the amount should last me for 6 mons and if it actually helps, my sister will bring me more on June, that's when she comes to visit here. i know how you feel about going back to the dr and having more tests, but you musn't ignore it my friend, talk to your dr. Rosemary, although i REALLY don't like alcohol, i took your advice and had 2 sips of wine.... and yep, it helped some. i had it again the next day, but nothing happened :( why do things stop work for me so fast...?????
Posted 1/31/2010 1:58 AM (GMT 0)
I found something on the internet that may be of interest to some of you.  It compares a diet with an ileostomy, and a diet with the BCIR procedure.  I am waiting to see if I would qualify for a BCIR, so I thought that it was very interesting.

The Ileostomy Diet

Significant differences exist between the conventional Brooke ileostomy with external appliance and the BCIR continent ileostomy with regard to diet.  In the conventional Brooke ileostomy with external appliance, the intestinal waste is moved through the system and up through the abdominal wall and finally out into the appliance by the muscular activity of the intestine (peristalsis).  Fibrous foods and foods that are difficult to digest include raw fruits and vegetables, the skin of a baked potato, nuts, popcorn, mushrooms, olives, and others. These foods can cause a “food blockage” – the flow of waste abruptly stops, and the person gets bloated, with nausea and vomiting occurring soon after.  A trip to the emergency room is often needed to flush out the stoma and dislodge the obstruction. 

In contrast, with the BCIR these difficult to digest foods move through the system and into the internal pouch.  There they will continue to be digested as the pouch is made from the intestine itself.  If the food material doesn’t come out with the first insertion of the drainage tube (the intubation or draining process), it will continue to soften up and be evacuated later.  Almost all people with a BCIR report that they eat anything and everything that they want.

Also, with the conventional ileostomy, once material passes into the appliance, it can no longer be digested or absorbed to become nutrition.  Even the liquid content is lost, and it is well known that people with an ileostomy have a tendency to become dehydrated. In contrast, with the BCIR nutrients and water continue to be absorbed into the body in-between intubations, so there will be much less likelihood of dehydration and the person’s nutritional status is enhanced overall.

Nutritional supplements are not required in general with the BCIR.

Posted 1/31/2010 3:20 AM (GMT 0)
Jenise, I so feel your concerns. If I dont take a laxative or miralax, I dont go very easily. I dont know what the deal is. Cuz I keep my diet very restricted. I do not however drink enough. Maybe that is the problem. I also have to strain a lot when I go. That is just so bizarre. And I rarely get much out. My last doctors appt. was good and my colonoscopy (per say) came out just fine. No narrowing of the anastomosis site and no adhesions. So I think I am a medical mystery, like all of us. I just dont know what to do anymore. Do you think our bodies get immune to the laxatives? And if they do, will the small intestine stop working? This really worries me. I so know that you dont want more tests, because that is the very reason I just deal with this. I mean how much more can be done to us??

Jen, hope you are ok. You dont need to end up back in that darn hospital. Is the doctor saying why you are having so many complications? You have had so much since your surgery. When is it going to end for you?

Hope everyone is having a good weekend. Love you
Posted 1/31/2010 3:31 AM (GMT 0)
Hi Rita, Thank you for keeping us updated on Lizzie's progress. I am glad to hear that the K pouch is working but I am wondering; how do they know that if she isn't eating yet? Believe me, I am not trying to be negative because I sooo much want Lizzie to start doing well! I just want to know how they evaluate the success of the K pouch. This would be useful info. for myself and for a friend of mine who may need to go from a sub-total colectomy to a K-Pouch. Please let me know when you can. I am praying for Lizzie daily; I hope they are curing her of the pnemonia and the bladder infection. You sound like a wonderful mom and you have a beautiful and brave daughter! I wish the best for both of you.

Love,
Gilda (originally from Grand Rapids, MI)

Post Edited (Gilda) : 1/30/2010 10:27:55 PM (GMT-7)

Posted 1/31/2010 5:27 AM (GMT 0)
Hi Kristin, I am finally starting to feel a little better so now I can answer your questions about vitamins. I felt really weak (like jello) for months after my surgery (April '09). To remind you, I had a sub-total colectomy with small intestine to rectum connection. It has been 10 full months since my surgery and unfortunately I still have to take Lomotil and Vicodin around the clock to control the diarrhea. I can slow things down a bit with the Lomotil and Vicodin but still, I get weak because I can't keep any nutrients in my system. Now, even without the diarrhea problem, a person who has a sub-total colectomy will still be prone to becoming deficient in the fat-soluble vitamins (A, D, E, and K). There are two types of vit. K; K1 and K2. One of these is acually made in the colon so if you don't have a colon then you won't be absorbing this vitamin. I have done a lot of reading about this surgery and vitamin deficiency plus I have talked to several doctors about why I often feel so weak. It gets confusing but I guess the deal is; not having a colon interferes with fat-absorption so you also easily lose the fat-soluble vitamins. It is important to get these vitamins into your system in a way where they are quickly absorbed. I take one supplement (a pill that dissolves quickly in water) that contains vit. A and E. Then I take a D3 capsule. Vitamin K is the trickiest vitamin to find in a supplement but you can order it online (it's a Vit. K capsule). I also take One-A-Day for Woman (50+ Advantage) and this has 25% of the daily requirement for Vit. K. You may also be deficient in vitamin B-12 since it is absorbed in the last part of the small intestine (terminal ileum). Here is a very important question for you: "Did they take out your ileo-cecal valve (the valve between the small and large intestine)? In my case, they did because the doctor was afraid it would twist and cause problems if they left it in after disconnecting the colon from one end of the valve and needing to take the small intestine from the other end, bringing it down to low pelvis and connecting it to the rectum. Anyway if they took out your ileocecal valve you most likely will need to take vitamin B-12 sublingually (under tongue) daily or every other day. Kristin, please let me know how you are doing. Also, ask your doctor if they took out your ileocecal valve and how he/she thinks this affects your general well-being. It is good if we can continue to share information so we can all find solutions to our health problems. I get tired of always trying to plan out my nutrition and keeping track of the various meds and supplements I need to take. All of this does help though so I guess it's necessary. There are a few other things I do to make myself feel better. Please take my suggestions and use them as you need them:

1. Drink high-calorie Strawberry Ensure when feeling weak
2. Get a really good full body massage when feeling weak, sick or depressed.
3. Take a warm bath.
4. Listen to beautiful music or watch an uplifting movie to help my mood.

I hope this helps you Kristen (or anyone else who needs suggestions). Please let me know how you are doing!
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