TOTAL COLECTOMY PART 35 THREAD 14

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

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

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

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.

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

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.

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 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!

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

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, 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.

Peltz,

Good luck to you.

Rosemary

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.