Seeking Support and Guidance for Colonic Inertia and Pelvic Floor Dysfunction

I don't really know where to start, so I'll just jump in here... I'm Samantha, I go by Sami. :) Hi y'all :) I'm 26, I turn 27 in 4 long days. 5'8 and ~160 lbs, previously 280 but we'll get to that! My story is pretty unique, I will try to eliminate unnecessary parts of the story if I can help it... I have had constipation issues as long as I can remember. I remember being in elementary school, complaining to my school nurse, who didn't take long to feel that I was "crying wolf", that I didn't feel well, ever. This continued through the years, and in my later years of high school, I was in the nurse's office for the same old "stomach ache" and ended up going to the ER to discover that I was so full and blocked of stool that I needed to be manually disimpacted. At the time, I was just seeing my family doctor, so she recommended a specialist in the smaller hospital in our area. I went to see her a few times only to discover that my issues were way beyond the IBD; I was not making BMs at all, and it kept happening over and over again. After feeling like no one would listen when I was sick, I quit going. I stopped making appointments and went on with the pain and about my life... A few years later, with a new PCP (fast forward through college and other life dramatics), I was rushed yet again to the ER with extreme abdominal pains and kept being released to start a Miralax regimen and some laxatives, MagCitrate, etc. With no relief, I started taking matters into my own hands. I started to research my condition, which at the time we only knew was IBD with chronic constipation, and similar stories to see what I could find. I went back to my new PCP, who I like; she recommended me to a specialist in GI at our larger, more notorious hospital, Dartmouth Hitchcock. After a few consultations with this new GI doctor, I was in progression with tests to really get to the bottom of this. We tested medications, Amitiza and Linzness (no result except lots of cramping), did several tests, the sitzmarker, anal manometry, balloon tests, breath test, endoscopy and colonoscopies, biopsies, biofeedback therapy, and the list goes on! Anyway, we finally discovered that I was suffering from Colonic Inertia and Pelvic Floor Dysfunction. I was then referred to a general surgeon to discuss my options. She and the surgeon were very concerned with my weight (280) with a very dangerous BMI and health issues (near diabetic); I would be risking too much to undergo any surgery. Their main focus at that point was to get my weight down, and with the inability to evacuate my bowels that I could not do it on my own, I had been trying for my entire teen to adult life. I was sent to consult with a Bariatric surgeon. We ended up agreeing that a Gastric Bypass would be helpful. As against the surgery as I was, I remembered my other doctors explaining how this would ultimately take my life. The stool would remain inside and eventually cause my body to become septic; I remembered the feeling of vomiting stool because I was so backed up and I couldn't poop! That was enough to get over it and say yes. I had surgery on December 17, 2012. The surgeon initially suggested that I get the colostomy at the same time; I said no. I wasn't saying no to the procedure; I was saying yes to the possibility that a reconstructive surgery such as the RNY bypass, that maybe just maybe the rerouting of the intestine might jog it enough to move things along for me. Diarrhea was a side effect for many many many patients; however, I was not one of the lucky ones. I proceeded to get down to 150 lbs and stayed there, passing tests with flying colors; doctors couldn't believe my results. I wasn't in it for the weight loss, yes, a great side effect, but I was doing it to be healthier. I remained at 150 and was working out so constantly that I ultimately weighed about 160 and packed on some muscle. I was feeling good, even though I was still constipated I couldn't miss out on anything at the time! This continued for about a year then I started noticing the awful day-changing symptoms returning. I started bloating all over again, I couldn't eat anything, couldn't drink anything. A year passed, same results. In and out of the ER. Nothing helped, another year went by and here we are in 2015 and I'm at it again, this time... there are no more choices for me.

June 12th I was at work, after a long week of being sluggish, tired, and in pain. I was looking like I was a few months pregnant. I thought I could be, so I took a few tests all with negative results, bright as day. I called my GI specialist, I had been getting worse, swelling was increasing, I thought I was going to pop, then I noticed blood coming from my belly button.... Her nurse called me back and chatted with me about my symptoms and consulted with the specialist, recommending I go get checked out immediately in the ER. I left work, went to the ER, stressed out knowing they never come prepared to help my situation. Usually trying to send me home on the Miralax fix... At this point, I would have let them do the surgery that day. I waited around and was finally seen, they ended up rehydrating me and giving me Zofran for my crazy nausea. They got me in for a CT scan, I refused pain meds; I can't stand the idea of covering it up... Got back into the room to relax a bit while I waited for results.... Came back with the obvious, oh you're full of stool and gas (DUH) and "oh yeah, did you know you had a 6cm cyst on your ovary?"... NO ma'am I didn't thank you. Anyway, this may or may not have explained that pain I was experiencing and the relation to pregnancy/menstrual issues. Anyway, didn't matter, but I made an appt with OBGYN at their recommendation. They proceeded to say the pain was irrelevant to OB and that I needed to go see my GI because "that's why I'm in pain" and they wouldn't consider taking it out until they did surgery for the colectomy. Blah blah normal hospital runaround.

Deep breaths.. I'm almost done. >_<

I went in for an upper endoscopy and a biopsy "just in case" to get an updated test before I meet with my surgeon Thursday the 9th. I was reviewing our notes from before when my mom and I met with him. His surgical plan was for an end colostomy. So far that's all I know. I am out of work since that day in the ER, and cannot return until I have relief, which is the surgery at this point.

Clearing my throat...

Now, here I am. Trying to get resources, I have done a lot of research and feel confident about the surgery and ostomy itself but I would love to have real people to talk with. Hopefully young people like me! But I am here for any guidance and friendship.

Hopefully this reaches someone who can help me, help you. Let's chat!

Sami

Well, young one... I am 52 this year and had an atonic colon... 13 days without elimination... I had a surgery turn into full-blown septic shock, lost my colon, have an ileostomy bag, and I rock it with bling... I am still young on the inside.

Hello Sami. Thank you for your post it was a very interesting and well-written read. It sounds to me as if your life will greatly improve with an ostomy and I hope everything goes well for you. There have been lots of posts on various subjects in the past and these can still be accessed on this site. Also I'm sure people on here will be very responsive to your questions and discussions once they get underway. I am now in my seventies but just like Moonshine I am still fairly young on the inside! The physical and emotional problems that sometimes confront us are not necessarily age related so if there is anything I can contribute I'll be pleased to give it a go. Best wishes Bill

Thank you both, that is a tremendous relief knowing there are people here to talk to!

Hi, boy. That sounds like you've had it tough. I've had a colostomy since Sept. 2009 - cancer. Anyway, hope you start feeling better soon. I don't usually reply/post, but I did want you to know that there are indeed people out here to talk to... any time. Cat6

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Sami, you describe a situation where your intestinal tract has controlled your life, to which I can identify but not to the extent you describe. Thankfully, you are still with us. Like Bill, I am in my 70s (soon to be 76) and have had an ileostomy for the last half of my life (37+ years). We are all different and respond differently to ostomy surgery, but my health since my ileostomy is remarkably better than before the surgery. Wishing you well. Ival

Hi Sami, welcome to this site. I am not in my 20s although sometimes think I am :) I had aggressive UC that led me to having ostomy surgery - I had no other choice. Living with an appliance, pouch, or bag (however one refers to it) does take some getting used to in the beginning. Allow yourself some time to figure out what works best for you. There are many different products on the market, from different-sized pouches, wafers, deodorants, and so on. Try different types of products to find the one that works best for you. I use Coloplast because I like the added security of the two-piece click (lock) system. Connect with a wound care nurse too. They know about ostomies. If you are having the surgery soon and are up for the trip, you may want to consider attending the National Ostomy Conference being held this year in St. Louis, Missouri. I went two years ago when I was a newbie and found it both educational and fun. Prior to my surgery, I did not know anyone living with an ostomy. This conference helped me as I learned by meeting others that I was not alone. In addition, I wrote a book about my medical journey and gaining an ostomy in order to help others traveling a similar path. It is titled "Stanley and Me Make Three." It can be found on Amazon and the Tate Publishing website. Take care, Sami, and keep posting. Everyone on this site is so very helpful. LadyHope

Hi Sami! I had a temporary colostomy at 40 from a freak infection, although I have always had problems with constipation (not nearly to your extent). I will be very honest, it wasn't something I ever wanted, but, I felt amazing after I recovered. Honestly, the best I had felt in years. I was actually somewhat sad to have the take down performed. There are many days I wish I still had it. You're going to be fine and I have no doubt feel so much better. Good luck!!!

Hi Sami, thanks for sharing. It was a very smart thing to do - to seek us out. Support is very much needed in this time. You will find that most of us have a love-hate relationship with our ostomy. I cannot imagine being in pain and discomfort like I was most of my life. But it is all good with my little friend Julio. Laugh and have fun with us. Ask anything you can imagine. We have hundreds of years of combined experience.

I have had a bag for 15 years. Learn to work with it. The worst is over. Found a good site for help. Check out TheAmericanOstomyClub.com for helpful ideas. Good stuff.

Hi Sami, I am a young 62 and had my ileostomy when I was a very young 22. I have enjoyed a very wonderful and productive life since then and I hope that you will too. Yes, Sami, I understand and remember how scared you must be, but stay positive and we are all rooting for you to have a good outcome. Take care.

Goodness, I am overwhelmed (pleasantly) with all of these replies. You are all amazing, thank you. Today is my birthday and tomorrow I see my surgeon! I am praying for resolution here. In the last few days, I have received the result of the Hydrogen Breath Test which showed abnormal results in which I have Small Intestine Bacterial Overgrowth... Not sure where this will lead us, but maybe closer to a further diagnosis. Thank you again, EACH OF YOU. It is so inspiring to read these messages! Wish me luck for tomorrow. God bless. Sami

Sami, happy happy birthday! Sau, you are looking for someone close to your age? I'm nineteen. I've been nineteen for over fifty years, too, so I've had quite a bit of experience. Not that experience is any help.

I sure hope your surgery goes well. I'll be waiting impatiently for the results as will almost everyone else on this site.

Remember, you will finally be able to fart. I know, that sounds sort of silly, but being a guy it sort of mattered in my case. My sister-in-law purchased for me a radio-controlled fart machine. When anesthesia came in to see me after my procedure and I made the thing fart for him, he insisted on taking it down to the operating rooms to show it off.

I happened to be employed in surgery at the time and I knew him, so I knew he'd bring it back. It turns out that I can still fart (although NOW those things happen all by themselves without any warning).

So, lemme know how things work out after surgery. You can reach me a LOT faster if you send me messages at my email address which is ntrubov at swbell dot net.

I'll be thinking of you.

Nick (in Fort Smith, Arkansas)

Happy Birthday Sami. You deserve to have a nice birthday present and get yourself all fixed up. Please let us know how it went. Best Wishes.

Happy birthday to you! Hope you have a wonderful day. LH

Hi Sami, I just came back to say hi again. Tell your surgeon (tomorrow) that we are all watching and waiting with you. Yeah, that shouldn't make him nervous (or her?) at all. NICK, in Arkansas

Hi Sami, I had cancer twice, the second time I ended up with an ileostomy. I had a colostomy in 07. I'm 57 years old but really feel like 30. Just letting you know if you have to have a colostomy it takes some getting used to, but you will. I'm getting married this Aug. to a wonderful man, who loves me just the way I am. Good luck to you and I hope all turns out well.

Once you get out of the hospital, check out the following website for help on recovery. TheAmericanOstomyClub.com has good information there. Good luck. I am sure you will get better. We are here to help you.

I am floored by the replies. You are all amazing. I just got back from meeting with a surgeon. It was a new person but I'm glad it was, he explained that the colostomy would not work for my situation. It would not relieve my symptoms. So that being said, we are looking at the Diverting Loop ileostomy. His major concern seemed to be that I needed to recognize the chance for dehydration, which I had read about. Fortunately, after undergoing RNY I know the importance of hydration but at this point, drinking more water is nothing if I can go on and live my life!! I will be meeting the ostomy nurse tomorrow and back to the surgeon(s) next Thursday! Time to get this show on the road!!!!!!!!! I will continuously check here to get support, advice, information or just for a laugh/smile. I seriously can't thank you all enough. Stories, tips, guidance welcome!!!! God bless. Sami

The next 3 months won't be fun but you will be glad you did it by Christmas. Life will change but for the better. You will gain your freedom back. Don't worry about the dehydration. That is easy to manage with your doctor and some simple medicine. I had gotten kidney stones in the past but no more. Good luck. Let us know how you are in a few weeks. I am sure you will be fine.

That's just what I needed! Thanks. I will let you know when I get a date for surgery!!! They just want to make sure I'm serious and understand what it takes, which I totally understand. Anything is better than sitting at home taking 15 laxatives a session and missing out on life (at 27)!!!!

Hi Sami. It's great that you are getting as much info from all of us on this site. But, we are not doctors. Undergoing something like this is definitely a life-changing surgery. Not to divert you from going this route... But I would get at least 2 other independent doctors' opinions. I did over 40 years ago and I would do it again. I am not in the least sorry for the decision to remove all of my colon and rectum because it saved my life. Since you have gone this far and if it is not an emergency situation, you likely have the time to do this. They may all recommend some form of surgery, but they may have a different idea of how the surgery should be performed. Also, selecting the best doctor to perform your surgery. I realize from being on this site and speaking with others having similar surgeries to mine how fortunate I was in having a very good surgeon. For instance, I am so thankful that when my surgeon removed my rectum that he didn't disrupt anything else in my body to malfunction. Even though I don't have one, I am known to be very "anal" and I like to check all my facts first. I don't mean to confuse or put doubt in your mind and I only hope this advice will help you. Best wishes.

That's right. I stayed at home all through my 16, 17, 18, 19 years because I was afraid to leave the house. Not what a teenager should be doing or worrying about. Now I travel the world for my job. And I don't worry about it... I go to Germany, Brazil, South Korea, Belgium, Mexico, and everywhere in the USA. And I don't worry about it! You will have freedom that you have not had in a long time. Take your time in recovery. Don't rush it. Just focus on getting through the next 3 months. It will be the best Christmas you had in a long time!

No kidding, right? I can't remember the last time I ate a meal with my family. And in 2012, I was in recovery from my bypass. I'm ready for it :)

Sammi, here I have for you a suggestion that may or may not have any bearing on what you and your surgeon are planning. See if he (or they) can make sure you do not have a cystic fibrosis gene (or tendency). And, of course, let us all know how things are going. You must know that we are all on your side (YouTube team). Nick (in Arkansas)

Damn spell checker!!! That last, of course, would be CYSTIC fibrosis NOT cystic fibrosis. ... I need a spell checker that hits me on the head before it lets me send.

Hello from Maine. How are you doing?