TOTAL COLECTOMY PART 35 THREAD 14

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esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/5/2010 1:29 PM (GMT -6)   
Just thought I'd start a new thread. Hope Lizzie is doing better. Rosemary

Carlybryn
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/5/2010 4:16 PM (GMT -6)   
Hi everyone,

I just wanna start out by saying thank you, because I have struggled with all this stuff for almost 4 years, and never felt the impulse to ask people who are dealing with the same horrid stuff i am dealing with for help all this time! So...here it goes. I am only 19, and first got sick when i was 15. I woke up one morning for school and felt nauseous, vomited a few times, and had a low-grade fever, so I stayed home from school. I stayed like this for a few days, and had also started to develop pain in the lower right section of my abdomen. the pain kept getting worse, and by the end of the weekend i was screaming and writhing in agony. they rushed me to the ER, where they were 99% sure without even doing any x-rays that it was my appendix, but did one just to be safe before surgery. It turned out that the x-ray came back completely clean. So, they kept doing more and more tests (small bowel follow through, MRI, etc...) all while pumping me full of pain meds to try and control it. after keeping me in the ER for 3 days, they decided that they could send me home with tons of pain meds, and that i was suffering from IBS, despite my regular for the previous 15 years. Scarily enough, the pain did not cease for almost 4 weeks, and I still to this day don't really remember anything from that time (the pain meds really knonked me out). But, miraculously, the pain faded away, and i went to the doctor for a follow up appt. When he was asking the usual routine questions (when was your last period, bowel movement, etc...) I had to stop and think. It turned out that I had not had a bowel movement in almost 4 weeks! So, he prescribed some easy otc laxatives (ex-lax, sennacot, miralax), and sent me on my way. Unfortunately, these meds did not work at all. This caused some concern, so they did a colonosopy after emptying me with golytely and found nothing.

I just realized that instead of writing an entire novel of my life in the past four years, i should just skip to the important info :) for the first 3 years, my only symptom severe constipation (along with the nausea and discomfort that provides). Honestly, I have tried EVERY single laxative available (trust me my medication history list for the past 3 years is over 11 pages long!), and traveled the country in seek of help from the best doctors. Last year, i started having unexplainable chronic urine leakage (has nothing to do with sneezing, laughing, standing up, etc...) and chronic nausea/vomiting (pretty much daily). Ive lost a ton of weight, and really have no appetite. I have been to Georgetown, Hopkins, Cleveland Clinic, University of Iowa, UNC, Temple, nationwide childrens hospital, and mayo clinic. I have had every test you guys mention, which all show that i do have colonic inertia and pelvic floor dysfunction. recently, my doctors have been interested in the possibility of something neurological going on (i've been having blurry vision, missing areas of my field of vision, i walk strangely, and NEVER get the urge to have a bm). whenever they do the balloon test, they always blow it up to full capacity, and i still can not even feel it in me. I am also not able to squeeze or bear down for unknown reasons. they tried biofeedback for a year and it didn't help. I've also tried countless forms of eastern medicine and supplements, changed my diet, physical therapy, osteopathy. Currently, the only thing that makes me have a bowel movement is drinking GoLytely, although after just having an x-ray the docs said that even after taking 10 hours to even start having BMs from it, i was still clogged up. I have been to several colorectal surgeons, who suggest either an illeostomy, colectomy, J pouch, or K pouch at this point.

I am so sorry to make you all read that much, but I am truly writing this out of desperation. I am so blessed to have a wonderful support team of family and friends to get me through this all the time, and also made a choice when i first got sick. I could either have become known as the "sick kid", or continue to be the zany, bubbly, colorful girl who can do whatever i set my mind to (sorry for the cheesiness!). I finished my freshman year of college majoring and double minoring in theater, dance, and music, started a club, held a job, took 8 classes, and got deans list, all while working through all of this. But, now that my symptoms are getting worse, its just getting harder to keep up with everything and uphold my "always happy and healthy" personality around everyone.

So, i guess after just writing that entire essay (i'm so sorry for the rambling!), I am just looking for any suggestions/thoughts on what to do next, and just really want to thank each and every one of you taking away my constant feeling of loneliness, like no one understands what we go through every day, and like i have a place where i am safe to talk to people about what I am really dealing with every day. :)

Thanks again and wishing that all of you are feeling well and had a super happy July 4th,
Carly

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 7/5/2010 5:29 PM (GMT -6)   
Hi Carly and welcome!
 
This is a wonderful site with very knowledgable people who will always be here for you to answer any questions and support you in any way that you need.   So sorry that you have had to endure so much suffering but eventually it gets to the point when enough is enough. Many people have had very successful ostomy surgeries on this forum and are extremely happy with the results. I personally had a subtotal almost 2 yrs ago which has been very successful and completely changed my life, and somewhat like you traveled all over to find answers and suffered for years. I'm sure others will be on soon to welcome you and offer their words of encouragement.
 
Remember you are NOT alone and we are here for you!
 
Peace & prayers,
Judy
 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/5/2010 6:28 PM (GMT -6)   
Carly,

Welcome aboard! You are sooo young to be having all this to deal with. I am like you The Happy Cheerful Face and inside we are crying our hearts out. I came to have an ileostomy due to losing the use of my colon and rectum (which did work) from a misdiagnosis, wrong surgery done incorrectly, and no follow up to complications by 2 original surgeons. I'll spare you the details of what was done. BUt my only original issue was intermittent incomplete rectal emptying. After they got done with me I had NO rectal emptying. AND could not eat for 13 months due to scarred in small intestine as well as scarred in large intestine. Your colorectal hospital travels look like mine. I had to see 11 colorectal surgeons at 7 top hospitals before I could find one that could save me the best that could be done. Extensive adhesion take down and permanent ileostomy. SO FAR anyway, no recurrence of small bowel adhesion obstruction, but it is a fear I live with on a daily basis. But am grateful for my ileo surgeon.

Having been given the gift of time, and being able to handle the actual ileostomy itself, if all stays well, I'm heading off on my 8th cruise next week. Since getting the ileo I have cruised 2ce in the Caribbean, Across the Atlantic to Spain, Portugal, Ireland, England; went to spend 2 weeks in IReland; did a world cruise in 2009, South America Cruise in 2010, another transatlantic dance cruise (Cunard line) in April of this year; and next week heading for Iceland, Greenland, Southern Norway, England and home.

I have had a few food blockages so have to eat really bland, but that may just be some leftover adhesion who knows, but it not the norm for most people on here. The ostomy products are good and after some training (ask Tracy) answers4me2...hope she comes along soon to post....she has a new ileo......... all gets easier with time with the appliance.

Some ideas I have for you: Have you been tested for Celiac disease (can present as diarrhea or constipation) get the 5 part Celiac blood test. Also get checked for Vit. B12 deficiency...with this get checked for elevated levels of MMA (methylmalonic acid.) Pernicious anemia can play havoc with nerves in every body part.

Good luck, Rosemary

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 7/5/2010 7:02 PM (GMT -6)   
Carly,

to me it sounds that more issues than just colonic inertia and pelvic floor dysfunction are going on. Most people with colonic inertia do not have vomiting, and there are even some who do not even expereince nausea or they started to be nauseated only when they have not had a bowel movement in 3-4 weeks. I was constantly more or less nauseated, could not eat anything without severe pain and severe nausea etc. Turned out that I had not only colonic inertia and rectal inertia but dysmotility throughout the GI tract, which means a dysmotile small bowel and stomach as well. In addition my motility disorder also affects my bladder; i am no longer able to go by my own, have a bladder catheter etc.
I was accused of having anorexia several times since I lost much weight both due to inadequate intake and malabsorbtion. This is usually not seen in colonic inertia either, mots folks can hold their weight.
Also, the severity of pain in colonic inertia is mostly related to the severity and duration of how long you have not been able to have a bowel movement but with generalized dysmotility a severe episode of constipation surrely aggravates enormously the pain, but you suffer from pain and(or discomfort, especially after eating, also in episodes with a less severity of contipation. Soemtimes I aslo had rare episodes of diarrhoea due to intestinal overgrwoth caused by the impaired motility but that did not help the pain much eitehr since the upper motility is still severely disturbed .
Please, do look into chronic intestinal pseudoobstrcution (the term for diffuse dysmotility)..Your docs are right that there may be an underlying neurological or autoimmune-mediated problem.
You said your small bowel was checked. When was it? Your small bowel could have been deteriorated. Plus, a small bowel follow through is not very accurate, it is normally used to rule out anatomic problems, the gold standard for small bowel motility testing is a small bowel manometry.

I would also recommend to an investigation of your bladder function. You may have a dilated bladder due to decreased sensory function and impaired motility. That's why you don't notice when the bladder is full and large volumes are stored streching the bladder tissue. When the maximal volume is exceeded you will leak bu that's it is not due to an overactive bladder but due to an atonic bladder/acontractile bladder.

Post Edited (pelztier86) : 7/5/2010 7:05:10 PM (GMT-6)


Carlybryn
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/5/2010 7:36 PM (GMT -6)   
hi guys,
wow thats awesome to already be getting such wonderful feedback! I can't thank you enough! this sounds super silly but just hearing all of this support and suggestions really helps :) I have already written down all of your major points and will be emailing them to my docs shortly to see what their thoughts are on all of this. I know this also sounds bad, but i am so torn about the ileo. Part of me really knows that it will be so helpful and just be a complete lifesaver to my health, but part of me also struggles tremendously with self esteem issues/is a serious dancer and is worried about having a bag. I have been offered the K pouch option, but that is a whoooooole lot more surgery and has way more complications than the ileo. I know i sound like such a dummy (why wouldnt i want to just feel better at this point??), but being a weirdo teenage girl who cant poop, throws up constantly, and leaks pee with bad self esteem issues doesn't really help either :p but positive attitudes are everything, and i really think thats a major reason that i'm able to get up and do everything i am so lucky to do! Thanks so much again for the suggestions so far and please let me know if you have anymore!
Keep smiling!
Carly

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/5/2010 8:03 PM (GMT -6)   
Carly, I have colonic inertia and a pelvic floor dysfunction, obstructive defecation syndrome. I guzzled tons of miralax and spent 3 to 6 hours everyday on the toilet. I finally had surgery on June 21st and the doctor did a subtotal colectomy and hooked me up to a temporary ileostomy. I feel so much better already and it has only been 2 weeks.

Having the ileo is not perfect and I am still adjusting to having the bag...I still don't know how to change the bag alone, husband has to help me everytime and he doesn't totally understand what to do either. It is a riot seeing us in the bathroom staring at my stoma and then trying to cut the wafer to fit around my stoma, etc.

I am still wondering what to eat....the output changes from 1 minute to the next....it goes from thick to thin constantly....

And my skin is a pretty irritated right now and feels itchy. I see the stoma nurse Wednesday, so hoping she has some advice for me.

But even with all of that, I feel so much better. My stomach feels less bloated...I don't feel sick everytime I eat....I suffered nausea almost everyday before my ileo. I can pass gas through the stoma now, where I could not pass gas before the ileo....I can also burp which I couldn't do before the ileo either....

I will have testing on my rectum in a couple of months to see if the surgery has corrected my outlet problem, but I am not holding my breath and don't hold out much hope that it has "cured" me....my outlet problem was severe.

And I may still have colonic inertia in my remaining colon????

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 7/5/2010 9:11 PM (GMT -6)   
I have an ileo as well whcih is not reversable due to my severe rectal spasms/inertia. I had two colon resections which left me with nearly no colon but failed either way.
I begged for an ileo but my surgeons were very relcutant and did not want to do such a procedure and harsh intervention of the body image on a young woman (I am turning 24 in 4 weeks, I was 19 when my condition became severe, but had had digestive problems my entire life). Although my pain and my gut issues did decrease after the ileostomy I finally got after being diagnosed with chronic intestinal pseudoobstrcution (for which I had to go across the border to Italy where a great motility expert offered me to come) I am still struglgling every day.

Now, my condition has totally spread onto the bladder and I have severe bladder/urethra spasms despite the bladder catheter. I have had the bladder catheter through the abdominal wall for 2 years now and it is the same play as it was with the bowel. I can't find a surgeon whi is willing to perfrom bladder surgery. It is clear that I have no other option any more but nobody will take responsibility for such a procedure in a patient like me.
What I would liek to say: there is no adequate age for an ileostomy; you can't be too young to get a procedure which probably ease your life at least somewhat. So far the ileo is the best thing I have had and I am very grateful for. Unfortuantely I still have severe problems making me be unable to pursue studies and have a normal life but I am so grateful I don't have to deal with this horrible constipation and the extreme gut pain I had experienced every single day prior to the operation. I have had no problems at all to accept the ileo and the altered body image...why should you have troubles with the acceptance of a "thing" that gives you your life back - at least partially (if you have diffuse motility you would still suffer from dysmotile bowel symptoms, but you would be better than prior to surgery nonetheless and I was ready to get any procedure that would give me any improvement no matter no much..the same would be true for my bladder symptoms)

In the meantime my body image is markedly altered anyway but I don't care. I have multiple scars, from my bowel surgeries and several implantations of a feeding catheter (at one time I was reaching a very dangerous and life-threatening weight and a trial with feeding into the small bowel by a nasoduodenal tube failed, so I had to got an intravenous access for iv-feeding. I have had multiple catheter infections with sepsis and one catheter had to be removed since the infection did not clear up so they inserted a new one on the other side/shoulder. It is not a port but a hickman catheter which means that a tube/line comes out of your skin and constantly hangs around you..but I don't care...you get used to such things especially when they help you. Recentöly I have a very hard time to accept the bladder catheter since it does not give me any much relief any more and is very uncomfortable.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/5/2010 9:23 PM (GMT -6)   
Carly,

What type of dancing do you do? Jazz? Ballet? Ballroom? There is a girl on here who is young and is a dancer at Disney World. She has an ileostomy as I recall. I think her code name is 80schick? Maybe she will jump in. You two would have a lot to post to eachother as you are both dancers and are both young.

There is a girl Lizzie on this forum who has one of those inner pouches (sorry to say I do not really remember which one. I think it is the k-pouch, but others will clarify if I am wrong.) She has had very serious issues and has had to get it redone. Then there is some issue with too much output, then it stopping and her needing an NG tube, total parental nutriton, etc. Docs at Cleveland to this day trying to figure out what is going on though technically I guess the pouch has been fixed. She has been down a very rough road several years in length and I think 5 surgeries total. Allie does updates. We all pray for Lizzie a LOT.

I'm not saying that all inner pouch surgeries go this way as they don't. But, with MY experience, I would like to have been told all the possible scenarios as I would not have had my original sigmoid resection, etc multiple complications which then lead into me needing the ileo, and voila I'm a life-time member of the ostomy strand!

Soooo, you're very justified in thinking this through very carefully and gathering all the data you can. Do be sure and ask your docs about the info Peltz mentioned. She has much knowledge in the dysmotility field where as I have knowledge in the structural field. If we all got together (our someday dream), we could write a book that would revolutionize medicine. We are the experts as we are living it. I think a room full of open-minded colorectal surgeons would really be impressed with us and might even think WITH us, that would be refreshing :-) There are some great ones out there. As well as some not so great ones.

Glad you jumped in Tracy, I was thinking you might just be around. Glad you are overall so much better. I could really see that coming for you and I'm so happy for you. If my colon had been inert I'd be jumping for joy too. The appliance issue will come; glad you're seeing your stoma nurse. :-)

Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/5/2010 9:31 PM (GMT -6)   
Peltz,

I guess we were posting at the same time. I should have remembered, but I had forgotten that you are also so young!!! Way too young to have to have all this knowledge that you do, but knowledge is power and you are obviously very intelligent to absorb all that you have about a very complex issue. You do what you gotta do, I know, but wow! I don't think any doc I've met over here would have a clue about the issues you describe. I predict with your fortitude and intelligence you will, in time, find a doc to make what improvements can be made to your bladder.. You have to hang on to this thought; it will keep you going.

Allie,

Any word on Lizzie? I know you said she was going to come home Tuesday after weaning off TPN. I sure hope things turn around for her as enough is truly enough. She has just GOT to get well. She's fought so hard for so long.

Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/5/2010 9:34 PM (GMT -6)   
Hodaya,

Thinking of you as the big day arrives. With your ileo done laporoscopically you should be whizzing around in no time. You have already adjusted to being without the use of your colon, so you will likely make major recovery strides. Your body won't even have to adjust. Sending you best wishes. You will get the hang of the appliance, it just takes time and changing it over and over and you will get it.

Rosemary

HopingForAnEnd
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 7/5/2010 9:41 PM (GMT -6)   
Hi Carly and welcome to this site. I am so glad the ladies are making you feel so comfortable and giving you great advice. I love this site.

Pelzt.....I had NO idea you had so many issues. I am so sorry for all that you are going through. What kind of surgery do you need that you can't find a doctor for? My niece has Chiari's malformation and has just had a urostomy done. Poor kid has been through so much. She is like you where she never got the urge or feeling to go pee. They did a test where they fill her bladder with a foley and she got to 700 ccs and never felt like she had to go. The only symptom she got was being nauseated. So they stopped and gave her the urostomy. Her colon is also affected but for now she is doing Miralax. She will however, need a ileo some day but with brain surgeries every couple of months and then the urostomy part she has had her fill for now. I really hope you find a doctor that is willing to help you soon.

Tracy....Did you freak when you first saw the ileo? After my last consultation where he told me thats what I would need, I decided to google them and had a panic attack. It looks so scary to me that I am scared to death. Is it painful at all? I am glad that you are at least feeling better. How did they find out that your rectum wasn't working? My doctor is saying that my rectum isn't working but I passed the manometry so I don't understand this. Did you pass your tests? Sorry so many questions...I am just nervous.

Butterfly.....I am so glad you were able to come on here and post. Everyone was so worried about you. I am happy your surgery went well.

Rosemary....Thank you for getting back to me. Unfortunately, I don't have the money to go out of state for a doctor. I am a stay at home mom of three and my husband works midnights so for me to do anything is difficult. I did find this doctor out of Rush though that is rated the best in illinois for colorectal/pelvic floor disorders. This is all he does. I called to make an appointment and he won't even see me until I fax all my records so he can decide whether or not to take my case. I am praying he does. I have a question for you since you have an ileo. Can you go swimming? I know that sounds really stupid but if there is a lot of output a day and you can't control when the output happens...how can one swim? I love the water and am scared I won't be able to get in again. I am very greatful for you taking the time to speak with me. I don't want to have to call the stoma nurse to find out all of these little questions.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/5/2010 11:07 PM (GMT -6)   
Hopingforanend, I thought I would be just fine seeing my stoma because I had done so much research and even watched how to change the bag on youtube....well, it is not the same as watching it on a computer. When the stoma nurse came to show me how to change the bag and I saw the stoma, I felt very hot and faint. The stoma appeared to be breathing and was moving a little bit. UGH, gave me the creeps. It then proceeded to poop everywhere. Luckily, the stoma nurse was very calm and talked me through it.

Now I have had the stoma for 2 weeks and I am okay with it. I can look at it, wipe it and around it, etc. No, it does not hurt at all. The skin around it is rather sore, but the actual stoma does not hurt at all.

I knew my rectum didn't work because I have been unable to have a normal bm for 5 years...I could push and push with all my might, but, no poop would come out. I had to use suppositories and manually disimpact every single bowel movement, no matter the consistency. This showed on the defogram also because despite repeated straining and pushing, I could not get any of the barium out.

The anal manometry showed high resting pressures which is consistent with chronic constipation and it showed my sensations were off, but otherwise the test read normal.

Did you have a defogram? If so, what did it show?

HopingForAnEnd
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 7/6/2010 12:44 AM (GMT -6)   
Tracy......OMG.....I was laughing so hard, not because of the shock you were in but that is the same reaction I am sure I would have. I told my husband after looking them up...that I thought I would even have to name it. It seemed like a whole other entity. That is the part, if I have to have one that I am not looking forward to. When I was looking them up on the internet, I had a major anxiety attack and couldn't breath for a while so I have not looked them up since. I have a hard time with a big pimple shakehead I did have the defecography done which the report read as normal other than a small rectocele after I went. Now my rectocele is bigger so I know things have changed since the test but not sure if anything else changed. This doc I just saw said he felt my rectum wasn't working and that my pelvic floor was shot because of the two past surgeries I just had to fix the rectocele. Now my manometry was normal other than my sensation for feeling stool in the rectum was really sensitive. I guess normal is being able to inflate the balloon to 200 and I could only handle 90 cc. The other thing that was abnormal were my sqeeze pressures but I knew that was bad because since my last surgery my rectum was totally numb. I got some feeling back but not much. A rectal exam doesn't even bother me anymore. That is the only thing that came back abnormal. The doctor I was seeing told me that all my tests were fine so I was blindsided by this last appointment with a new doc. I KNEW that my sitz marker was bad because on day 4 there were still markers in the beginning of the colon next to the small bowel and then on day 7 there was still a marker in the descending colon. I know that one marker isn't horrible but I was coming off of a miralax dose when I had the test done. However, I knew markers by the small bowel was not good on day 4 and the other doc said that was fine. Whatever. It is amazing how many doctors are out there that just don't know much. Thank you so much for taking the time to talk to me. I am sorry you have to go through this but I am glad you are here!

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 7/6/2010 7:41 AM (GMT -6)   

Hi Ladies!

 

Sorry for the delay...I got lost with our previous thread being locked, and this one starting. Apparently I really rely on those e-mail alerts! Whoops.

 

Lizzie may be going home today. That hasn't been 100% confirmed yet. They stopped TPN and her PICC fluids a couple nights ago; currently she is on only enough fluids to keep the PICC line open. Great news is that she is off the fluids, her labs are holding steady, and she is not dumping! Being without TPN and fluids is exhausting, though, so pray for strength and stamina as her body readjusts to being without those, and having to take everything by mouth. She still has some pain, so we will see what the doctors have to say about that. Keep praying!

 

Carly- Welcome, sunshine!! I am 24, and I was your age when my health really tanked. I had a total colectomy with ileorectal anastomosis almost three years ago (at 21). Soooooo much better; still have significant systemic motility problems and a mess of a rectum and pelvic floor that the biofeedback therapist is trying to fix. You're in the right place...ask away! And keep smiling!

 

Has anyone heard from Hodaya? Surgery is getting close...

 

Have a great day, everyone! Off to biofeedback (yay?)

 

Love to all,

 

Allie


Life-long GI problems.
- 2004: Motility problems completely took over my life (I was 18). Tons of doctors later... 
- July 2007: Diagnosed with colonic inertia, small bowel dysmotility, delayed gastric emptying, rectal dyssynergia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic debilitating pain due to a small bowel dysmotility.
- September 2008: Barium study shows dilated small bowel loops (4.9cm), indicative of partial obstructions
- May 2010: Doctors suspect worsening rectal dysmotility; manometry inconclusive; rectal biopsies normal
- June 2010: Biofeedback (entire pelvic floor in full spasm...PT has quite the project on her hands!)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/6/2010 9:55 AM (GMT -6)   
Pray for Lizzie!

Hopingforanend,

Yes you can go swimming. You frame the paper tape on the wafer with Hy Tape (waterproof tape). You swim way after you have eaten one meal (and the most poop comes out) and before you have your next meal. Though the ileo is always putting out (should be anyway), the increased output times are right after eating.

You also can get ostomy swim suits from whiterose.com in England. They have a built-in panel across the inside of the swim suit that you drop your bag into so it does not show down the leg of the swim suit. one lady on a cruise loved my suit and asked me where I got it. I gave her the order info. When she gets it, she will likely say, "what is this little panel on the inside front?" (didn't tell her it was an ostomy suit.) hehehehe! Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/6/2010 9:58 AM (GMT -6)   
Yep the stoma does breathe. It sort of goes in and out (peristalisis) THis is a GOOD THING though. You want it to be doing this. BUT the first time is quite a treat (Faint!) I did it too when it was new. Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/6/2010 2:14 PM (GMT -6)   
hey all,

thanks so much Rosemary! tomorrow i meet with the stoma nurse. i watched some stoma videos on youtube..... believe it or not, i've never ever watched any videos of stomas till now and I'M FREAKED OUT!! I'M GROSSED!! DEPRESSED!! I DONT KNOW IF I CAN LIVE WITH THIS!!!! OMG...... i saw how the poo is smeared around the stoma and you have to wipe it, but it's always pouring out, it's never really clean, just a dirty business..... and looks like such a hard work changing the wafer etc. and the skin.. OMG, i'm not sure i can handle this, i'm sorry, i don't mean to offend all of you with a stoma, my mind and emtions are in complete turmoil. but i also certainly cannot stay the way i am :( i think my life is over officially, well it ended 17 yrs ago, but i always had hopes things will be o.k. but now i know it's officially over. Tracy, i think you're brave! all of you with stomas are so brave!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/6/2010 2:41 PM (GMT -6)   
Hodaya,

Or this could just be the beginning of your life..........nah, none of us are offended we've all been there.

What saved me the emotional turmoil of getting a stoma was it was either that or die of my colon, rectum, and small intestine being basically scarred shut result of the what turned out to be unneeded sigmoid resection and pelvic floor "restoration" surgery I'd had in 2006. I had basically HAD to hunt for fecal diversion for 13 months and for having adhesions removed from my small intestine so I could once again eat, gain nutrients, and pass waste!

So at 99 lbs, I was THRILLED to be getting my stoma. Now I've chunked up to 130 lbs.

BUT, you are doing this electively, pretty much that is; I understand why you have chosen to elect this, basically to get your lifestyle back or to GET a life style. But this is not a matter of life or death for you because you ARE living the way you are. But you are choosing to have this to get a livable better life style. So your situation going into this is much different than mine.

Tracy is a better example of someone going into this somewhat electively as you are. Her situation was very similar to yours being basically chained to the bathroom with frustratingly futile multiple attempts to do what others do automatically. AND she is thrilled, though working through the process.

It definitely takes some getting used to, but if we can do it, you can too.

One thing in your favor is that you already are using only your small intestine. So your output won't be fast and as much volume initially as the rest of us had because our whole body had to adjust to going from having the use of our colon to having only the use of the small intestine. For this reason, yours should be like mine is now...it's what we called "adapted ileostomate." That means you have major moves after you eat, and the rest of the time it's constant in small amounts (except for a few hour break here or there..up to two hours quiet is normal). So you should have the easiest time of all of us.

The stoma nurses I had were super. My first few changes took me 2 hours each; now I can do it in 20 minutes. Tomorrow I plan to change my bag so am eating a very early dinner. That is how to get a calm stoma in the a.m. for a change.

Tracy will be able to tell you more. BUT the choice IS in your hands. From what you've said, I think you are making the right one, but that is just my opinion.

Rosemary P.S. I neglected to say I'm having a hot fudge sundae for dinner. I HOPE my stoma is quiet in the a.m. for a change. We will see :-) THis is called "do what I say, not what I do." Technically a lot of sweet makes it active. BUt if it is, I'll just keep a towel over it and proceed with the change in the a.m.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/6/2010 2:56 PM (GMT -6)   
Hodaya, take a deep breath! It will be okay. ;)

I understand your apprehension....but it will be okay. It does take some getting used to, but after the initial shock of seeing the stoma sticking out of your own stomach, it just gets better from there. It is "gross", but I think it is kind-of cool now. I have watched it in action and it is actually quite fascinating. I can't even begin to tell you how awesome it feels to be able to eat and not blow up like a balloon, to be able to poop without sitting on the toilet for hours a day, to be able to pass gas and burp....

IT IS SO WORTH IT!

Granted, I don't know how to change the wafer all by myself, but I bet if I was faced with an emergency, that I would make out just fine. I see the stoma nurse tomorrow and she is going to go over the steps again with me. I will change the bag all by myself, but with her looking on to help me through any problems. My biggest complaint is having to cut the wafer to fit around the stoma.....UGH But, even this is temporary since the stoma only shrinks for 6 weeks, then I can preorder the wafers already cut to my stoma size. YAY Can't wait for that day....

Yes, there is poo around the stoma, but the stoma is used to it....so no worries about keeping it clean....just remember that you can order beige bags, then you can't even see the stoma, the poo, or anything. And if you want to check on your stoma, you can always unsnap the bag from the wafer and take a peek and see how your stoma is doing....no big deal at all. I ordered clear bags and beige bags....I accidentally put on a beige bag the other day and I loved it.....

You are keeping your rectum, right? So, this stoma is temporary, am I right? Because go temporary just in case you can't stand it....but I truly think you will LOVE it after you get used to it. Girl, you won't know what to do with all of your extra time not spent in the bathroom....the time spent emptying the bag is 2 minutes, tops.

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 7/6/2010 7:15 PM (GMT -6)   
Allie,

I sent you an e-mail few days ago, did you receive it? I will be absent at least for the next two days (immunoglubulin therapy)

Please pray for me that I will make a step forward maybe at least in the endocrinological area which I hoped it will be adressed, too.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/6/2010 7:20 PM (GMT -6)   
Peltz,

Good luck to you.

Rosemary

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 7/6/2010 11:21 PM (GMT -6)   

Sarah- I did get your e-mail, so sorry for the delay...the weekend got a little nuts. I just sent you a reply, and if I did my time difference math correctly, hopefully you'll get it before you leave for your immunoglobulin therapy. Many prayers!!

 

Rosemary- Hope the sundae went well :)

 

Hodaya- While I do not have an ostomy, I have a feeling that you will find this surgery so freeing, and I can't wait to hear how it all goes, and all the new hobbies you will have time for! Have fun getting your bullseye! They put one on me before surgery just in case my surgeon found the need for an ileo. Praying for you; keep us posted!

 

Tracy- Love hearing that you are doing so well! Remind me again, do you have motility issues with your stomach or small bowel?

 

Keep praying for Lizzie, everyone! They did not discharge her today, as they are trying to get a better handle on her pain. Pray that she would be encouraged, and that her strength and stamina would multiply!

 

Love and prayers to all!

 

Allie


Life-long GI problems.
- 2004: Motility problems completely took over my life (I was 18). Tons of doctors later... 
- July 2007: Diagnosed with colonic inertia, small bowel dysmotility, delayed gastric emptying, rectal dyssynergia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic debilitating pain due to a small bowel dysmotility.
- September 2008: Barium study shows dilated small bowel loops (4.9cm), indicative of partial obstructions
- May 2010: Doctors suspect worsening rectal dysmotility; manometry inconclusive; rectal biopsies normal
- June 2010: Biofeedback (entire pelvic floor in full spasm...PT has quite the project on her hands!)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 7/7/2010 4:20 AM (GMT -6)   
Hodaya ((HUGS))) I be thinking of you so much! This really could be a new beginning...

Peltz, gee.. you poor girl, you've been through enough already!

Lizzie, praying for you..

Tracy, you sound AMAZING! I'm glad you ended up keeping most of your colon, I think it was the right choice. You/me can always go back and have the rest removed.. if ever needed, but once you take it out - you can't get it back! My colon is still sluggish.. but it does work 10 times better than before surgery. Yesterday, I decided to take MOM because I just felt so "clogged" and it worked! With in 2 hours I was going a lot.. and I feel so much better. Before surgery, the MOM didn't work for hours and hours.. so improved!

Rosemary, I can't believe you have another cruise scheduled! How awesome it must be to travel via a cruiseline! We have a small.. 7 day cruise the end of Oct, and I can hardly wait.. I should be fully recovered by that time.
*** New Schdule Schedule July 26, 2010 **

~Jenise~


Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(

** update: Surgery to fix rectocele and other pelvic issues 07/26/2010)**


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/7/2010 7:53 AM (GMT -6)   
thanks so much everyone for the well wishes, it means so much! oh i'll be o.k, i think :/ i saw the stoma nurse today and she marked the location of my stoma and gave me one wafer and bag to take down with me to the OR.

Tracy, the rectum stays, but i'm not having a loop ileo, it's gonna be an end ileo and it can always be reconnected to the rectum. but i hope to be o.k with the stoma, caused my rectum is useless, there's no point in trying to use it again ever.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

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