6 years and now complications

I know this is an old thread but I as well had a Wood/Sappala micropouch. I really liked my doctor until I went post op and any time I had to come back for a followup we had to drive 2 hours and then sit in his waiting room for up to 4 hours past appt time due to overscheduling and then there would be a $45 out of pocket charge for less than 5 minutes of face time. However, I am extremely grateful to them for the surgery and do not regret it. I just chose to use my primary care doctor to followup with as he had the ability to see me for more than a few scant minutes. I want you to have my background so you can understand a bit. I was a fairly healthy girl until 15 when I had to have a radical hysterectomy and go on Hormone Replacement Therapy(HRT). I have to say I am grateful for one more thing and that is learning I wasn’t alone. Through the pre-surgery process I found out up to 10% of women on HRT or fertility drugs show abnormal metabolic changes in the extreme. I’ve not taken any HRT since that day. At my surgery date, March 21, 2002,  I was a 30 year old female, 6’1” tall and weighed 467.5 pounds. I lost 41 pounds in the first 10 days. I left the Midwest in September of 2003 for Washington State and my followup ended due to the cross country move. I weight approximately 280ish pounds. My doctor and I set my goal weight at 175-190 pounds. In the next 3 years I dropped to about 220. I considered myself lucky that even at 18 months to 48 months I was losing at a pace of about 2 pounds a month. All that said I have to say that the last year and a half have been difficult.  2 years ago Kaiser in their infinite wisdom put me on fairly high doses of anti-inflammatory meds for tendinitis in my elbow and joint aches. As I said my followup care was not the best, I had nothing that said this was a bad idea and my doctor at Kaiser was clueless about bariatric patients and I begged her to get information. However, Kaiser is not my favorite health system. After 4 months of high doses of ibuprophen I was in the ER in November not having eaten in 2 weeks, in shock, freezing unable to warm with the feeling of razor blades in my stomach. AHA! Bariatric patients should only take anti-inflammatory meds on rare occasions, my pouch had scar tissue but it should pass okay.  I lost a total of 16 pounds between Nov. 1 and Dec. 31.  But I bounced back. I settled into 2007 being able to eat some again and resting about 210. I went to visit my best friend in Phoenix on June 1^, 2007 and all heck broke loose. I flew back on Monday and went to work feeling a bit under the weather. Now granted since my bypass I am not a drinker and I had had a drink a day in Phoenix for a total of 3 drinks. I thought it was jetlag until at 2:00 the next morning I woke screaming in agony. Let’s just say that at first I thought I was having some kind of “aliens” nightmare.   I did what every GB patient I know does when they feel like there is someone twisting a knife in their stomach, figured I had food caught. I went to the bathroom and tried to throw up and nearly made myself black out with the pain. I can handle a lot of pain. This was tearing fingernails in the carpet on all 4’s screaming trying to find a way to breathe. My boyfriend even had to try to pull clothes on me as he called his mom to drive me to ER so he could stay with kids til she got back. We live in the country so fastest way is to get there yourself as an ambulance could take 45 minutes. I literally thought I was dying. By the time we got to the ER my body was shutting down with the pain. I couldn’t sit or stand, I was in shock again. They wrapped me in over 20 heated blankets and used heated saline before I stopped trembling out of control.  It turned out I had gall stones and they had brought on an extreme case of pancreatitus with Lipase scores over 6000. At that level my internal organs were being eaten by the lipase acid. It took a lot of morphine and 4 days before they could remove my gall bladder as my system was so inflamed. To complicate things my heart started to stop wanting to beat and kept dropping down into the high 30s. I’m a very active 37 year old who drinks too much coffee but goes non stop so to have them start talking about pacemakers and such. They did the gall bladder removal laproscopically and the first few weeks either I just didn’t notice due to the painkillers or the problems didn’t begin yet. Round about the 28^th I started to not feel good. Gastric distress, cramps, bloating, pain and a lot of loose awful stool. It got worse each day and I stopped being able to eat. I saw a new doctor(health plan switched) and they thought it was just the flu. I was horribly dehydrated, not eating and feeling lousy. Some IV fluids and I felt a ton better. Of course I did. I had stopped eating a week before and barely been able to drink. You give me fluids and I’m not dehydrated and my body has a bit of nourishment. Then we go into vicious cycle mode. I try to eat. I feel nauseus, then I get ab pain and they give me more painkillers, we run scads more tests. After 3 weeks I feel like a zombie. I’m popping 3 vicodin a day just to be able to eat about a cup and a half of food. I’m not myself, I’m irritable, off, zombie-like from the pain meds and starting to get a little junkie feeling. Every few days goes like this, dr appt, what’s your pain level about a 5 but I get spikes up to 9’s and the pancreatitus taught me a whole new level 10 pain. Okay well we’re going to draw labs, pee in a cup, do an MRI, some kind of scopy from the top or bottom or CAT SCAN this. After 3 weeks I’d give more fluids than your average blood drive at a high school. I call in for more meds and they tell me they’ll call the pharmacy. I go to pick up after work and no refill. I call again, they tell me they will be there that night. I stop again, no meds. I’m beginning to freak a little down to 2 pain pills and now they are not open until Monday. I spend Saturday, not eating and in pain so I can save my 2 pills for Sunday night and Monday morning so I can get to work. My employer is already not happy I’ve had so many lab tests. Monday morning I call up and raise a lil holy hell with the nurse. Call for refill on Wednesdday afternoon, no pills there Thursday, call again they promise by end of day Friday they will be there and no pills, now I didn’t have a good weekend and the nurse says the doctor needs to see me before prescribing more and her earliest opening is Friday. You want me who lives in chronic pain, barely eats of sleeps taking 3 pain pills a day to go cold turkey and now spend 4 days not eating or sleeping for an appt. because it took you 5 days to decide I need an appt before I can get more and now I’ve been out for 2 and soon out for 6 days. I don’t need to tell you that working in a corporate atmosphere and going through bad withdrawal don’t go hand in hand. At one point I called my sis who is a nursing home administrator and just bawled for an hour and lost it. By Friday I didn’t want their damn pills. I was over the worst of getting off them and I would rather live daily with pain knowing I have to than to go through that week again. I did demand a referral to the specialist they were not providing and we hunkered down to get through til they could manage it. After reporting the dr. office and nurse to the administrator of hospital, apologies were made and finally after 3 months I got my referral. By this point I had dropped from 210 to 181 in less than 3 months. I was existing on the few foods which did not cause me pain. Potato chips, about ½ cup a day of minced lunchmeat and a string cheese or a few cubes of liv active cheese if I melted it. I have an allergy to soy and intolerances for milk but not cheese and quickly figured out if it was liquid such as soup I could at least keep myself alive by ingesting very small quantities of very soft food. I saw my specialist in October of last year. My specialist thought perhaps it was pancreatitus rearing up again. So more tests and a special cat scan and I even did the drink barium and get xrayed every lil while for 9 hours. That was a treat. Let’s make a gastric bypass patient with a stomach the size of a golf ball drink a 12 ounce cup of chalky thick mucus when she has been throwing up water. Holy cats! My stool which my primary care checked every week like he was prospecting for gold shows way too much fungus and bile acid. More tests. For whatever reason my liver is on overdrive and has been since the gall bladder removal. Dumping bile acid like it’s the latest craze. Oh and GI Study shows that my digestive tract looks like someone stuck a wooden spoon and scrambled up my intestines like they were tied in knots.  There’s hairpin curves and double in and out loopy-d-loops and even a few dead ends which dense masses in them. End result is the lap GB removal surgery twisted around my guts so much food revolts at passing through my system. Which causes my liver in it’s helpful way to keep dumping bile acid to help my body process things only my body is doing fine except for the now too twisty turny path the food uses. I now take 8 horse pills a day to keep my bile acid in check. I also take PB8 supplements, chewable multi-vits with iron, b-12 sublingual dots, I’m on something else for nausea but I still get bad bouts of pain. I’ve been living with ab pain for so long I don’t think I could benchmark normal for you. I can live with level roughly 3 discomfort pain day to day. It’s the pushing the cart around the grocery store and a level 9 hits me out of the blue and I am down on my hands and knees in business suit, panting, tears streaming down my face as my cart goes skidding into the shelves that I can’t deal with. Too many people asking me if I gone into labor until I stand up. The other thing is I just don’t feel right. I feel wrong inside. There is a dead pain hollowness and it feels almost like I am rotting in my stomach. Eating is a daily challenge to try to find a way to do. My energy levels are so low I barely get through work and my commute and I crawl into bed and I used to be Ms. Bee Bop around. I thought time may help it but it’s been 15 months. At least now I have competent docs and hopefully next week will start a new primary care which is an advanced form of care at OHSU. I want to be me again. I don’t want to wake up each day and ask myself if I can get through another day of pain and discomfort and embarrassment. Don’t get me wrong my specialist is making headway. I am eating now, my hair is no longer falling out, my color is back and my heartrate is up in the 50-80 range depending on activity. All that said if I had to do it over again the choice would be that much harder having been through the last 2 years. I never regretted my surgery but today I weight the consequence of living the rest of my life like this or being bound to a wheel chair weighing over 600 pounds. I still think I made the right choice but I do need them to figure this out. Today I’m bouncing around 205 pounds.  The pills I’m on wreak havoc with peeing too much and water retention. It sucks to feel alone and lost out there when they don’t know what’s wrong with you. I want to join my local support group but I really don’t have the energy to go after work. I know I may not be the only one out there going through this and sometimes it just helps to know someone else out there is going through something like you or similar. rae  

WOW....I can't believe all the problems that you have been facing and the pain is just terrible. I really feel like doctors don't listen to there patients and I don't think that they understand the antomy of our bodies. I had RNY 41/2 years ago and have 2 near death experiences in the past 2 years. About 2 years after my surgery I would be on the floor in dying pain in my stomach I would go to the ER, doctors they just give my pain meds and send me home. I even spent a week in the hospital and then finding nothing would send me home. In June of 06 I gave birth to twin boys 2 days after giving birth I was in such pain I thought I was dying I new something wasn't right with my insides. All the doctors said it was just gas from the C-section. They send me home with my twins that night the pain meds wouldn't help for a week I was shuffled back and forth from my home to the doctors to the ER. I had given up I new something was wrong. Finally I saw surgeon that saw me in the hospital who had performed the RNY after doing test the doctor rushed in and told me I would be having surgery right now that it was a life and death situation. I have a bowel obstruction that was so bad that it almost killed me. I spent a week in the hospital without my new babies it was awful....I did recover from surgery and about 7 months later the surgery site was done lateral and had herniated. I was having a lot of pain and my surgeion told me I need to get it fixed. But how is this possible with 2 babies and no lifting. Finally on March 26,2008 I finally decided I needed to take care of me so I made arrangements for someone to stay and help me with my twins. The same doctor that saved my life was doing my hernia repair I felt good about the surgery. Talk about some bad luck about 15 minutes under anestiesia I went into congestive heart failure and had a heart attack. I was on a ventilator for 4 days and spent a week in the ICU. I almost died and never did have the surgery and now I'm on heart medication and see a cardiologist on a regular basics. I'm only 34 years....I always tell my husband when I die it will be because of a medical error. You know your body better then anyone and it seems like when your in pain they just shut you up with pain drugs. I still have to get this hernia surgery done and I'm so scarred for might what happen next....Hang in there I feel for you!

Shannon

Shannon, it's just awful that you've had such problems, too.  I wonder why it is that you went into cardiac arrest?  Was there something wrong with your heart that they didn't know about, or was it caused by the surgery itself, or do they even know?  I'm sorry you've got to deal with heart problems at your young age.
I just had a hernia repair done with my tummy tuck, and the PS told me that she was shocked that I wasn't totally obstructed already, it was so involved.  Two loops of bowel had passed through my abdominal muscle wall, through a hole the size of a pencil eraser.  The fat around the area was already turning black due to lack of blood supply.  I was having pain from it,  and it was quite large so I could really feel it on the outside.  All that to say, I started taking stool softeners, like four a day, and eating carefully and selectively so that nothing big or hard to digest had to pass through there.  I think those two actions stopped me from having a complete blockage before she was able to repair the hernia.  Maybe you could ask your doctor if those are things you could try without harm?
Steph

You have been thru quite an ordeal!!! I'm so sorry to hear this. I am glad to hear that your dr's are finally making some headway and helping you to feel a little bit better. I can imagine that you feel very alone in all of this. I hope that things continue to get better and better for you. Please feel free to come here anytime~we're here to help if we can, even if its only to lend an ear. Also, update your situation when you can.

Thanks both of you. Yes I don't trust doctors much anymore but I try to go in with an open mind.  Part of it is that over 6 years dealing with gastric bypass I've come to learn alot.  In fact recently my dietician said I am one of the most knowledgeable and understanding of the patients who have had GB she has seen.  To me my surgery was never a miracle. It was a tool, something that I always tried to find but never had.

However my understanding comes at an end when you have over 4 dozen tests and studies done and they say they don't know what's wrong.  I lived my entire adult life obese. I lived with joint pain, heaving my own bulk around and to the gym. I can't say I was fit but even with a BMI over 60 I was active. A flight of stairs would take it out of me but it doesn't mean i didn't climb it.

I think anyone who goes through this begins to know there body. I can hear food gurgle through me. I've even learned my too twisty catch points and I can press and bruise my abdomen to try to make that food move. What I cant do is fix why I feel wrong inside.  This surgery and the recuperation can make you face a lot of food things.  I just am having trouble finding the desire to eat when it makes me sick when I do.  Yet you know you need to eat to survive.

One of the funniest things I know is my offhand comment to my mom that whoever thought a 500 pound woman would one day slowly be starving to death. I mean I know at 200 pounds the average person sees me and thinks I'm still fat. Those who know and love me look and see the circles under my eyes, the lines on my face, the sallowness of skin, they see my spirit is blinked out because I'm not right inside.

I'm not as worried now as I was last December. I've put a few pounds on, my skin isn't so ashy and sallow. My hair has filled back in. Between the meds and my desire I've fighting but that struggle exhausts you. Meals out with coworkers where you don't want to eat for fear of pain. Hour+ commutes where you have to learn where you can find a bathroom in under 5 minutes all along your 75 mile commute, having to take drugs and medications you would rather not take for your own sanity.

Sorry guess I just needed to vent some. We've been moving for 10 days and my body and spirit are pretty beat down, but it's done now. I'm just physically, emotionally and mentally sick of being sick. My papa bear always said suck it up and move-my problem is I've been sucking it up for so long now my momentum is burned out and the fuel tank is empty of reserve so I really need someone else to do their job for awhile and figure out what the heck is wrong with me.

rae

I am so sorry you've had this happen to you.  I can't even imagine how you must feel.  You are obviously a strong person to survive the daily grind of it all. 
I was wondering if they can do any kind of surgery to straighten out your bowels? It seems like they should attempt to fix the tangled mess, but I don't know if that's an option.  Just curious.
Hang in there, Rae, and please do keep us updated.  Vent anytime!
Steph

How terrible for you. I do hope that with some new doctors on your case that they will be able to help you gain back your life and stop your pain.

All my best

Sher

WHY! what a story. Thank you for sharing your story with everyone on this board. It was really heart felt. Wish you only healthy days ahead. Please keep everyone updated as your health continues to improve.



Tammie

Is it possible that you are suffering from intussception (spelling likely wrong) of your intestines?

This is a CLASSIC intestinal blockage and so many of us are going through it at year SIX!!! 

Razor blades feeling in stomach.... Check

every single test doesn't show anything.... check

Lying on the floor with a pain level of 13 and your stomach is distended and yet you are in the fetal position.... check. 

doctor thinking it is gallbladder/pancreas and schedules gall bladder surgery.... check

After gall bladder surgery.... still pain.... ..check!

Yep..this is what you have.

Finally I begged another WLS surgeon to do exploratory on me.  He found I had a "hernia" in the Mesentary/Petersens space. 

Essentially it is a "void" in the area of your intestines.  When we lose a lot of weight, we lose the fat that cushions the intestines therefore making them move around like "snakes in a snake pit" causing them to kink and unkink.  Yours my dear are STAYING kinked and if you don't get surgery right away, parts of your bowels can die... because of strangulation.  This almost happened to me and they were even talking "colostomy bag."  Luckily when they got in there, there was still just a LITTLE blood flow to keep that part of the intestine from dying and necrotizing.  I am sorry to scare you but believe me... if you can find a surgeon to do exploratory and "tack your intestines down" like they did mine so they can't move anymore... your life will be SOOOOOOOO much better!  It is worth it! 

I will be 8 years out soon and it hit me at 6 years.  Don't take "no" for an answer.  This has happened to me, Kathy (of Kathy and Rich), Butterfly Reborn and Jupiter....uh.. something.  I can't remember her name.

I really.. am 100 percent sure this is what is wrong.  I think the gall bladder surgery just aggravated it even more.  For the LIFE of me, I don't know why they didn't notice it during gallbladder surgery... well duh.... they didn't discover it on mine either.  Don't know why I am surprised at that.  Can you tell I am jaded? 

I was popping Tramadol like crazy and now I don't have to do that anymore.  Been pain free for almost 2 years.  DO IT!!!!!!!!!!!  Your bowel life and death depends on it.  Don't wait till all the blood flow is blocked.  You do NOT want a colostomy bag.