TOTAL COLECTOMY PART 31

Hi Kristen, while in the hospital last month - after my surgery - I had a fecal impaction! My rectum was filled with golf ball size stool so I was ordered to take MiraLax 3 times a day to keep thing loose and soft. I have since reduced it to 1-1/2 -2 times a day. For the first few weeks, I went poo often.. maybe up to 12 times a day. Yesterday - I only went once, and had to use a fleet! I still have most of my colon - along with the transverse being "extremely" redundant and flopping (their wording). I honestly think I will still struggle with constipation because I still have so much left. They considered removing all the colon, or part of the transverse at one time.. but my surgeon felt I would be helped by doing a low anterior resection. He removed my entire sigmoid and upper part of the rectum. That said... he was focused on a "mechanical obstruction" I had that was due to a rectopexy surgery a few months back. He never really asked me if I suffered from constipation, and honestly - it was my secret that I never revealed to anyone or any doctor. I had been using laxatives and enema's for years - and was embarrassed to tell. I do hope though, even if I have to use MiraLax forever, that things will continue to flow!

Gilda, my colon was very redundant and floppy - that my GI indicated it was caused by years of chronic constipation.... they say a redundant colon doesn't cause issues.. but when it it twistd and it takes so long to move your bowels - I say it is!! Maybe they say it isn't because they don't live in our bodies..? my surgeon focused on the twisted, redundant sigmoid part of it. My colon was extremely redundant and floppy - that they spent twice as long with me in the x-ray room but still couldn't get the barium to fill my ascending colon properly. I did have a Sitz Marker study - and on day 5 I failed the test. Day 4 they were scattered throughout the colon, with many at the rectosigmoid junction and on day 5 - 13 were stuck in the rectosigmoid area, and the others in the transverse colon. Conflicting opinions.. GI said CI, surgeon said blockage at the rectosigmoid area, causing it to slow the whole colon. I did try and speak up about my lifetime of constipation (with was in my medical notes from the referring uro-gyn) but he was just focused on my current issue - so I hope and pray I'll be okay in the future! I posted a few pictures of it before - but here you go!

rectum & sigmoid (pic 1 & 2)
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http://lh4.ggpht.com/_PIdpHcAsSz4/St-LyA2wvQI/AAAAAAAAASE/xRI2mBxdIms/s720/1.jpg

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Last Photo: Colon after barium was emptied (looks like a lot is left!!) It doesn't look to me like my transverse colon is where it is suppose to be!

lh4.ggpht.com/_PIdpHcAsSz4/St-LyiRmpUI/AAAAAAAAASI/dvva-wiBDqg/s576/3.jpg

Anyway.. continuing (I'm long winded this morning!!) LOL I went back and re-read ALL the posts on the Total Colectomy and the MAJORITY of posters are no longer posting.. and that's a good sign that their surgeries were successful, and they are now living life and not giving any thought to having to poo. For others things aren't perfect or there are complications. For many - that don't have success, I think it has a lot to do with pelvic floor or rectum issues. The whole pelvic floor issue is very complex, and even my doctors told me I may need some bio-feedback. That's why I always ask if people have to strain/push.. I really don't know what it is like to have a 'normal' BM. I haven't had one in over 21 years! (giving birth to son, bad, bad injury). I do still strain/push.. and I guess that is not normal..? But it is 10 times better than it was.. so I'm happy!

Tracy, ouch - I didn't know you had your sling removed! I had to have mine released, because after surgery - I could not pee ONE drop! Nada.. nothing came out!! I had to wear a catheter for 3 weeks - and did get a bladder/kidney infection. They had to cut about a 3 inch incision and dug around to find it. That, along with this latest rectocele repair.. I'm afraid my hubby will never be able to have relations with me! We were only able to do it a couple times after my last surgery - and that hurt! I had just started pelvic floor therapy in October, but canceled because of this pending surgery. *sigh* I hope this all ends soon. Your test day is going to be exhausting, but better to get it over with all at once! Gosh.. we all KNOW how embarrassing these tests are.. try not to dwell on it!

Butterfly... scary isn't it? I too am so concerned about the problems ladies have with constipation after a total colectomy! It doesn't seem possible... however, with pelvic floor or rectal issues - it is very possible. Still, I think even if some here end up with an ostomy, at least they tried not to by having a Total Colectomy with ileorectal anastamosis first. At least that is what I feel... I would have wanted.

Rosemary, your so right... seeing the world must be such an eye opener! It amazing how much our medical care has advanced, yet in this day and age to realize what they did to you is unthinkable. They gave you a lifetime sentence for sure and I can only imagine how many times the 'would have, could have, should have's" would pop into my mind. Well.. honestly, since I started all this surgery to "correct" things, it does pop into my mind. I know had I only had baby #3 as a planned C-section.. I would not be where I am. Can't go back.. but can share our stories in hopes to help others.

Lizzie, Lizzie, Lizzie... first and last on my mind.... praying for you, hoping things are going well at CC. I can't wait till you're back and things are going so much better then these last few months. Hope you can post us an update soon.

Butterfly,

Yes, I'm still taking miralax twice a day and I STILL have to use an enema at least once a day.  The miralax has helped, but the longer I take it, the less it seems to work.  The first few weeks I was able to eat 3 meals and the miralax kept things flowing.  Now I take it in the morning and I go a couple times and I usually don't eat much (unless I'm going to be home all day) until dinner, when I take more miralax.  If I eat during the day I might be able to go a little, or I may just get rectal pain from the poo stuck in my rectum.

I cancelled my appt. with my surgeon for next week and am going to wait until I see my GI on the 18th of Feb.  My old GI retired, and I'm anxious to get a new opinion with this new doctor of what I might be able to try.  My surgeon seems to be at wit's end as to why I can't just poop and I don't think he has more options other than an ileostomy.  I'll  never say never, and several times a week I think I would rather have one than deal with this, but then I'll have a couple good days and I'm ok with the way things are.  They are FAR from perfect even at best, but I've never been perfect in this department, so I shouldn't really expect that I guess.

I have always had to strain, except for the first few weeks after surgery.  Then things just flowed like water out of me!!

Hoping Lizzie is doing ok...hope we hear from her soon.

Janie

 

hey my friends! havn't had much time to post lately, but here i am. thanks for everyone's replies regarding miralax. i'm not gonna start yet. i just know it'll stop working too soon for me.. then what..??? i'm going less to b/r this last week, but i've been eating less too, so i don't know, but anyhow, i feel good, i don't have pain or discomfort, so i'm o.k. Lizzie, i'm so excited for you, but also concerned. i just hope and pray everything goes well. we're all anxiously waiting to hear from you. sending HUGE (((HUGS))) your way! love you!! Tracy, thanks! yes i at least feel like i've accomplished a bit by cutting down the cigs, something i've never been able to do before. GOOD FOR YOU for trying to quit completely! i wish you the best of luck with it! of course the tests you're having are no fun, but necessary. hope you make it through as easy as posible - GOOD LUCK! Jen, i'm so worried about you going in and out of the hosp and it doesn't seem to end... gosh i hope and pray things are improving for you. hang in there honey, i'm sure it's not easy for you and your family. keeping you in my prayers always! Rosemary, fake sugar helped me for about 3 weeks, but then it unfortunately stopped. nothing lasts long for us constipated ppl. ugh.... i wish it did. glad you're having a good time! Lori, when will you have the results of your test? i pray the results are good so you can have your surgery on June. about the bottox you had, did it help relax your rectal muscles? thanks for your support! yes it's devastating when everything fails and there seems to be no solution, but have an ileostomy. this is a terrible time in my life, cuz pre op i at least still had hopes, but now.... anyway, watever happens i'll deal with it and learn to accept. i can understand how terrified you are after all you've been through. i pray for you daily and hope you can finally find some peace in your life. Kristen, i'm glad your surgery went well and you now feel better! it sure is great to poop on your own, isn't? it's been like a dreem for all of us for so long. after my surgery, as soon as i started to go to the b/r i was also thinking why didn't i do it sooner..?? but better later than never i guess. i hope it keeps working great for you always. go easy with the food, don't over do it, eat small amounts at a time. as to your questions: 1. stay away from fresh fruits and veggies, all kinds of beans, seeds, nuts, grains, popcorn, these are all hard to process for us w/o a colon and can also cause a blockage. 2. my bms were never painful. this pain you're describing is not normal. i'm glad you're seeing your surgeon and have him check your rectum, i would say maybe it's a fissure, but you didn't mention any bleeding with bms, so i don't know. Gilda, yes i was told i had a very redundent and twisted colon. and both my gi and surgoen told me that a redundant and twisted colon is not the reason for it not functioning and that it probably has something to do with the nerves and hormons. Lori, gosh you're so right!! i also noticed this, that the girls who posted in 2005-2006 were luckier. there were more success stories then and now it's just the opposite. it's so strange, isn't it? maybe the drs changed something with the procedure anad this change is not a good one..?? k, so im off to bed. i hope when i wake up in the morning there will be an update from Lizze. Jen, hoping to hear from you soon too. Jenise, Janie and everyone else, love you all very much!

Thanks Darlene for the update on Lizzie. Please let her know I will be praying for her and the doctors who do the procedure! You are right it is definitely her time for much needed relief. She has gone through soooooooooo much.

If you could continue to update us on how she is doing while she is not able to that would be wonderful. Every day I (and I know everyone else) is looking for an update.

Please give her a hug and let her know HW family loves her!

Kristen

Darlene, thanks so much for the update! i saw on FB the surgery is monday after noon. yes we are all concerned about Lizzie, she's been through too much. she deserve to finally have her life back!!! not eating for 2 weeks!!!!! her weight was too low already... i can't imagine how it is now. poor thing. we're all praying for her everyday and esp on monday we've got to say a special prayer together. the more ppl praying together at the exact same time for the same thing, the more chances prayers will be answered :) we love you Lizzie (((HUGS))) xoxoxoxoxoxo

Hodaya, I probably won't find out my test results until the end of February, but maybe before.  I have 2 more tests to get thru.  On February 1st I have a fistulagram, and on February 16th I have a gastrograffin enema.  I have to take these results to Dr. Wexner at Cleveland Clinic Florida on March 8th and he will decide whether or not my small intestines have healed sufficiently to have additional surgery for an ileostomy in June.  June will be a year past my emergency surgery.  I am terrified after being in the hospital for so long last time, but don't really have any other options.

 

I'm not sure whether or not the botox injextions helped me.  I had them the day before I had my colectomy surgery.  I was totally incontinent for quite awhile after my surgery, so that may have been a side effect.  My surgeon had wanted me to try biofeedback prior to surgery, too, but my insurance company would not pay for it.  It does seem like not many people on this message board have any luck with it, anyhow.

I'm sorry that your surgery hasn't been everything that you expected.  It makes me wonder why it hasn't worked for so many of us, but maybe colectomy surgery doesn't have a high success rate?  It seems very unfair.

 

Lizzie, if you can read this, we're all praying for you and hope that your BCIR works.  I know that is what you truly wanted.  Cleveland Clinic has a great reputation and I feel good that you're there.  They'll do everything in their power to help you.  We miss you and your messages, and wish the best for you.

 

butterfly
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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

Hodaya, Lizzie and I had alot of the same issues and I'm anxious to hear how her surgery turns out.  I was totally against the BCIR procedure, because I am afraid of the side effects and the ability to only be able to be treated where the surgery is performed.  Now, I wonder if BCIR is a positive solution for us, before having to have a permanent ileostomy.

I have just requested copies of my records from Dr. Wexner at Cleveland Clinic Florida (who performed my colectomy) and my local surgeon (who performed my leg/ileostomy).  I pray the best for Lizzie, and  I want to know how she feels about her BCIR procedure if that's what she gets.

I live in Florida and the BCIR institute is only 5 hours away (Cleveland Clinic is 8 1/2 hours away), in St. Petersburg.  I'm thinking about sending them my hospital records and see what they say.  Lizzie had sent her records there, too, and said that the doctor was very kind.  Like Lizzie, if I could have the surgery, I'm not sure if my insurance company would pay for it as it's out of network; however, Cleveland Clinic is out of network for me, too.

I want to research and figure out the pros and cons between a possible Brooke ileostomy and the BCIR procedure.  After my last emergency surgery, I am very timid about having surgery again.  Frankly, I am very scared and nervous.  Whatever happens in the future, I want this to be my last surgery if I can help it at all.

butterfly
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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

Darlene, Thanks for update on Lizzie.

Lizzie, thanks for posting.  Glad they can do the BIRC then go to the end ileo if you need it.  I do not know how much small intestine you need to lose prior to having short gut syndrome, HOPEFULLY the BCIR will work.  You must have really had quite a time checking into that place.  Oh, Lord.  Glad you have confidence in your surgeon.  Your start at CC sure sounded rocky.

I just dehydrated on a very hot side trip in Peru this a.m. but am coming around now.  No longer having the use of my colon (which worked fine), I dehydrate easily.  Thanks for all your prayers, we'll all keep praying for all of us; including Jen and all the others and esp you Lizzie.

Rosemary

Hey all....

Just thought I would say HI. I had a horrible day yesterday. I tried a cup of ice cream and could not function I was so sick. It was the first real thing I have tried since I was admitted 16 days ago. I just cant eat and even sips of sprite make me feel sick. My every hour dilaudid would not even help. I think al ot of it was horrible gas pains. I am still distended, but better than before. My PICC line is not drawing blood today so they have to hhave a PICC team come ake a look at it :( since I have absolutely zero veins left. I got tattooed for surgery and it made me so nervous. They had to mark me for ileo just in case and said if it happened my right side was too scarred. My k-pouch is lower than my old ileo on my right side. I am extremely nervous and miss you all.

Lizzie

Lizzie, the time is almost here.. praying for you that this nightmare will soon be over. I have a friend with some sort of internal pouch.. don't know what it is called. Anyway - she got this 30 years ago.... while in her 20's. All I know is that she has to use a insert a tube to empty it, and when she had it done - it was a very new procedure and done in St. Petersburg FL. Today - I can tell you she is overweight and has no problems eating! She said she feels normal, and doesn't think of it ever - it's just her normal. I pray that you'll be the same!

Marissa, sorry about your aunt.. and the stress that your brothers killer will be free.. that's awful. Now about the MiraLax.. it has has NO TASTE... but I'm exactly the same way!! LOL. I mix it in crystal light and guzzle it down like it is medicine. I wouldn't dream of putting it in my coffee!

Butterfly, no doubt your sick of surgeries.... hope that you get one last one that works!

As far I go.. no more metamucil!! That stuff was just awful on me.. and caused me constipation. When I did go, it was weird and hard to expell... I couldn't push it out and had more straining than I feel comfortable doing. I don't want to ruin my rectal prolapse repair!! I had to take MOM and upped my MiraLax again. I started to eat fiber one cereal.. and now as of this AM, I seem to be more on track like I was before. Thank goodness.

Lizzie, i'm sure you're nervous and scared and that's totally normal, but finally you're gonna try the thing you wanted to begin with. i can't say i'm not nervous for you Lizzie, cuz i am. i'm worried and concerned for you, cuz you've been through WAY too much and i'd hate it if something goes wrong, BUT i'm praying this is the best thing for you and the last surgery you have. Lori, there's a sugeon here in israel who did a one yr training at CC FL....!! and he's one of the very few sugeons here who knows how to do the BCIR, BUT....... my medical service don't cover him :( he's most experienced with our condition and very smart and knowlegable. i will HAVE to try to find a way to go to him... but anyway, i'm not even sure about anything yet. i hope it works the BEST for Lizzie, and if as a result you decide to also try it, i hope and pray you have greatest success with it too. but consult with as many drs as you can about this. Jenise, i'm glad things are back to normal for you. no more metamucil. Marisa, sorry honey for all that's been happening all at the same time.... but you're strong and you're coping! it sounds like it to me. i know it's hard... death in the family. pls be strong honey. about your brother's killer.... i'm sure you're furious. and i really can't believe they're letting a killer out ever....???? he should be in forever if not more!!!! darn, this is plain outrageous!! thanks for asking of me, well i'm not so good, i've been extremely constipated these last 2 days. i feel bloated and uncomfortable. i hope tomorrow is a better day. off to bed g'nite, ((((hugs)))) to everyone!

Hodaya and Lori- (and all)

I am very scared for the surgery, but to answer some of your questions, NO obstructions are not a big focus or as a matter of fact the only thing they have said is that you have to chew, chew, chew. Same as with and ileo...I will have the same diet and things can obstruct in your ileo just as a tube. You use a 30 french catheter to empty about 4-6 times a day. They are taking only 40 cm of the small bowel so he said that even, God forbid, if I did have complications and a failed pouch I would not have issues with short gut syndrome and if they have to repair something they do not have to use more of the small bowel. Each surgeon does the k-pouch different. The one thing Cleveland does not do is the "live in" collar that Florida does and this is just, according to Dr. Dietz, surgeons personal preference. So according to CC I am having a k-pouch. He believed I was a good candidate becuase I have had a functioning ileostomy (only issue I had was retracted stoma issues) and all test show that motility is fine in my small bowel even though my symptoms may seem to show different. It has been, for now, deemed that all of these symptoms are from my rectum inertia solely.

I got sick again tonight after trying a popsicle and few bites of vanilla ice cream. I keep vomiting in my mouth and have horrible distensio and cramping again. I am so so nervous for Monday I could scream, puke, and dance all at once. My husband got here today and him and his mom are going to check out Clevelands bar/restaurant scene in the warehouse district. Adams friend also lives in Cleveland and he is going to take a couple hr break in the afternoon and go watch some football with his buddy. It will be a good distraction for him. I like how low the k-pouch stoma is tattoed to be, its about an inch lower than my ileo scar and they are going to fix my scar while they are in there. I am nervous to have my rectum removed...nervous for the pain of this surgery. I have been in so much pain already and the dilaudid, my body is getting used to it already.

Anyways I wish the best for you Lori in whatever may come and Hodaya I really think you need to be thinking of alternatives. I hate to say this, but you need to either break down and try the normolax and see if you get relief or think more surgery if you do not want to take laxatives. You cannot live the way you are and once you are far post-op as I am from the original TC your going to end up living in the constant pain and fear and misery I have for 2 years. I do not want this for either of you....

Love and miss EVERYBODY!

Lizzie

Hodoya,

No, my surgeon did not take a look inside. He just told me that this would pain would/should pass with time. I am getting a littler worried that I have more issues going on then originally thought do this pain. I am also taking dilaudid and it does not to be as effective as it first was. In the morning I want to get a pill down my throat first thing before a bm just so I can bear it. You're right, I think something is wrong. I wish I could of had all the tests before surgery, but because my insurance was running out I didn't think I had a choice. I think I will give it one more week and then I will be 3 weeks post-op and I will see the surgeon if this continues.

Rosemary, I hope you are having a wonderfully warm time!

Jenise, how are you doing?

Jen, are you in the hospital?

Lizzie, We all are praying so hard for you. I am so sorry you got sick after having very little liquid. Monday, will be the day your life turns around for you!

I am praying for all of my new friends!

Can anyone tell me the name of the medication for the butt burn? Today, it has been awful. Is the first day I left the house (besides doctor's appts.) since my surgery and that was a little scary too. My husband and I went to a baby shower for our granddaughter who is due next month. It was an hour drive to and from, but at least I made it. I think something in the punch I drank must be really irritating the butt burn.

Hugs to all and goodnight!

Kristen