I have been gone for a long time but I have missed the OH family. So I thought I'd post a medical update for anyone who is curious, up for a lengthy read, interested in my crazy story... Whatever your reason, I welcome you. :) Oh, and I'll soon upload an update picture in this post. Keep an eye out for my edit!

Please keep in mind my constipation issues were NOT caused by the RNY bypass. I had it for many many years prior to considering RNY surgery. Hence why I said this is a long read: it's lengthy but detailed. Thanks if you do take the time to read my story!

I don't really know where to start and it's been so long so I'll just jump in here... I'm 27 as of today! I'm 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 continue through the years and in my later years of high school I was in the nurses 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 BM's 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 I 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 what 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 Hitch**** 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 monometry, balloon tests, breath test, endos and colonoscopys, 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 eventaully 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 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. wink emoticon 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 result.... 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 recommedation. 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.

I went in for an upper endoscopy and a biopsy "just in case" to get an updated test before I meet with my surgeon 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.

Added, just received result of a HBT with small intestine bacterial growth. Hoping this leads to some result of effectiveness for my future. Tomorrow morning I meet with the surgeon.

 

Thank you all for your support, in advance. 

God bless.

Sami

Regardless of my medical condition, a body you love is achievable after RNY. I have very little skin issue, yes my underarms and lower belly sag, but who cares? I'm ALIVE

 

I think you look damn good, health issues or not! Congrats on reaching goal!

Thanks for the early morning blush! :) 

I appreciate it so much :)

Sami,

First you look amazing!!! want you to know I am praying for you! 

You sure have had a tough journey,Sami. Praying that the doctors get it figured out for you soon. Thanks for checking in and keeping us updated too.

Being out of work and having few people to talk to, I knew right where to go!! Thank you for the support

best of luck to you. you're going through alot. 

So sorry that you are having a rough time. Sending you tons of virtual hugs.

HUGS.. I could have written some of that post... This is long - but - maybe it will help you..

SIBO... I am pretty sure I deal with that. for 2 years I was in constant pain., bloated, full of it,   unable to have a complete BM... etc etc...  Finally got diagnosed.. IBS-C.  In other words- the doc told me "they don't know why some people get that.  Just take miralax, and here are the pain l pills, and the intestine muscle relaxant. - Hyoscyamine; Take it as needed... and come back in 3 months to let me know how are you doing."

 

Yea, right... so I started digging...  for info.. plus I started going to different docs - got check for allergies - including food allergies. 

The info I found- suggested I have SIBO...  small intestinal bacterial overgrowth. That can be treated with antibiotics. Plus a specific diet can help - SIBO diet.  Low fiber diet.  Diet low in FODMAP foods.  High fat diet. So I adapted.

I removed from my diet the food I show allergy to:  dairy, soy. Removed all grains. got tested for more allergies: (blood work) - that show allergy to vanilla, pineapple, and bananas... among other things.. 

I miss my onions and garlic, and vanilla. Yogurt,. cheese.. etc etc....

I found a GI doc who is aware of SIBO and helps people like me.  Though we did not risk to have me tested...the breath test.. due to RNY RH may be too dangerous for me.. But based on symptoms, my reaction to some "fibers" and RNY, and my medical history - it is 99% likely I have SIBO... 

My gut has low motility.. and I get "backed up"if I eat food that I am allergic to...Gluten will bind me - and almost any amount of dairy.  

I eat low fiber. Stopping or reducing dietary fiber intake reduces constipation and its associated symptoms  and this . Most people suggest increasing fiber - but fiber binds me, and gets digested in my small intestine causing gas, pain blot...  

I take 2-3 capfuls of miralax every day,  in the morning. Plus I take 800 mg most evenings, and 2000-3000 mg of Vit C (to help to heal the gut) 1-2 x a day.  I take allegra and zyrtec (generic) to help with the  allergies.  Plus Zantac, deals with Histamine 2 - related to food allergies. 

Some foods - traces - It is close to impossible to eliminate, that's why i take the allergy pills. 

Allergy to soy- with soy being almost everywhere - even in animal feed - unless I am willing to spend $$$$ and never ever eat out - the cross contamination soy and other food is really high. 

To help with SIBO - I also make sure that I "wash" my guts with liquids only - and not eat food for at least 12-16 hrs every 24hrs... It makes a huge difference how I feel and how my gut is behaving. 

I do eat late to avoid low BS in a middle of the night...and typically I woudl eat Nut butter (NSA). then the next day I don't eat food (I drink coffee, tea, water****il at least lunch time.. most day till 1-2 pm. 

That way I "flash" my gut from any "leftover foods".

But - if I get backed up (i.e. got careless and ate 2 slices of cheese) or ate food that had too much fiber..and everything stops...- I also stop eating solids and increase my liquids and Miralax until things clear.. sometimes it may take a few hours - something a few days..

But being pain free and having BM every day is so worth that. 

Last week I had a reminder why I do what I do and why I maintain the diet - I ate some collard greens that had been mixed with cabbage, plus some spinach, plus ... I am not if  that was the combination, together with too much fiber - but the pain that woke me up at midnight, together with horrible cramps... I could not breathe... even drinking water was painful...  I knew I had to walk, and drink warm liquids and took Hycomine, and .... The whole ordeal lasted 3 hours... The next 2 days I was mostly drinking liquids and eating very little... until things "passed" and my gut stopped being angry at me...  

Every day that I have now - I make choices.. . - what and how  much I eat - vs the pain I am willing to deal with.  

It took me 4 days to get clean for colonoscopy.. 2 days liquids... and 2 days doing the  "cleanup"  Even on my "modified , clean diet..my body reacts with a delay to any laxative or liquids.. 

But as long as follow my plan - you will never know I have the issue.. 

I can travel. I no longer need daily or 2 x day high enemas...