I'm still here...

I'm still "heavy" one useless G-Tube...it's like a bad fashion accessory, but you can't take it off! It had to be tried, because the alternative is extreme and irreversible.  I saw Dr. Kroh at Cleveland Clinic in December for a follow-up, and he said to give this tube another 3 months to heal before we jump to the next step.  Well, here we are about 3 months later and most of what I eat/drink is just sitting in the tube, and although the tube is clamped, as soon as you unclamp it, a steady stream of food/drink runs back out.  I stopped taking my Nexium because the pill is bright purple and was very visible as it was stuck in the G-tube, clearly it wasn't absorbing.  My pain management doctor switched me from my oral pain med back to the Fentanyl patch, and mentally it just killed me, a giant step backwards.  I was still taking oral narcotic pain meds, but a much lower dose and I thought I had left the Fentanyl patches and super duper narcotic prescriptions behind me.  I wasn't in any less pain, I just know that these meds are not good for anyone long term.  I was willing to be in more pain so I could take less meds. The pain mgmt doctor put me back on the patch because like the food/liquids/medications, my liquid Lortab was leaking out of the tube as well.  I did the patch for a couple months, but each time I had to get a new one out and put it on, it just really ticked me off.  I just went back to him about a week ago and told him I'm done with the patch, so he put me back to the oral Lortab (liquid), of course trying to be hopeful but telling me it was probably not going to provide good pain coverage.  It doesn't matter anyway, even when I was on the patch I still ended up in the hospital 2 more times in the last 2 months because of abdominal pain & nausea/vomiting.  
I was able to do a telephone follow-up with Dr. Kroh (surgeon at Cleveland Clinic) about a week ago.  We still discussed the possibility of doing a Gastrectomy (removing the rest of my stomach) and bringing a Roux Limb of small intestine up to it, and leaving a J-Tube behind as a "fail safe" was for me to get nutrition if I am unable to eat enough by mouth.  I think there is still some question as to whether this could still be a small intestine problem as well as what he calls a Post Vagotomy Syndrome (Disrupted peristalsis due to dissection of the Vagus Nerve).  So, the plan is that I am heading back to Cleveland Clinic the week of April 9 to do a CT Enterography (specialized CT that will actually visualize the inner walls of the small intestine to show them any narrow or abnormal areas that might be impeding the flow and causing intermittent small bowel obstructions.  Dr. Kroh also mentioned doing a Smart Pill study, it is similar to a camera pill but instead of images, it records motility times and gastric movement, and may show any specific areas of slow down.  I really appreciate that he is doing these last tests to make sure we have covered all the ground before doing an extreme surgery that cannot be reversed.  Ironically, the proposed surgery would actually bring my anatomy back to a very similar state as to when I had the gastric bypass surgery.  I do still find silver linings in things, the only positive aspect of having this G-Tube is that the last couple of CT Scans I had, I didn't have to drink the yucky contrast, they put it in my G-Tube...but man, due to it's dysfunction, even though the RN pushed it slowly in, by the time she was done, it felt like it was traveling all the way up to my mouth.  I also was facing drinking magnesium citrate while I was in the hospital to clear up a little constipation, and that too was able to be put through the G-Tube.  I was doing some research on this CT Enterography and was dismayed to read that the amount of contrast to be ingested is roughly triple the normal amount, so I already have offered up using my G-Tube as a pathway...might as well use it before I lose it, right?
I still find things to laugh about, and through friends, family, and even friends on here, I truly know that I am blessed and reminded that it can always be worse.  I have some dark days, this next week will be stressful.  I have my social security disability hearing and my deposition for the Med Mal lawsuit all in the same week.  It's the right thing to do, and I'm tough.  I'll be thinking about what all of this has done to my kids and family, and that will get me through it.
As always, I hope this finds all of you feeling good and getting answers...the theme this week: STAY STRONG!!

I am sorry you are going through all this and I hope you get some answers.  I have one stupid question - is it possible that the G tube is clogged?  I had a G tube for a while and it wasn't working - at one point it got clogged and at another point, it actually fell out.  When it got clogged and nothing would go through, I ended up in the ER and they put some gingerale in the tube and the bubbles broke the clog after about 5 minutes and they told me to have it in the house all the time in case it happened again.  Just a thought.

as far as the pill test - be careful - I asked my gastro doctor and he said he wont do it on me because he said when we swallow it  = there is a possibilty that it will not go  through our small intestines fully, it may go to the bypassed part and get stuck and then surgery would be needed.  He also said it is a large pill and there is a possibility that it could get stuck at any of the connections also requiring surgery, so he felt it was way too dangerous for us.

I am interested in that special CT you mentioned and I am going to do some research on it.  I have had alot of complications and my digestive tract hasnt' been the same since having my illiostomy reversed.

as far as the fentanyl patch - why are you afraid of it?  If you need it there is no danger to use it long term, that is what it is used for - it says right on the package,not for acute pain, only for chronic pain. I have been on it for about or more years and can't live without it.  Since my abdominal surgeries, I wear the fentanyl patch and use either percocet or dilaudid for breakthrough pain.  I am finally doing better the past few weeks but I used to take the dilaudid every 3 -4 hours with the patch.  there are pain meds out there that can help us - dilaudid is a tiny little pill - the size of a dot.  Even when I couldn't swallow pills, that one I could it is so tiny.
I wish you the best and hope they can fix you

 Thank you so much for your info & support, I'm sorry that you are struggling as well. The tube isn't clogged (but I'll keep that ginger ale in mind!), it was put in as a way for me to vent/decompress my stomach in hopes of easing the pain and nausea. I can't use it as intended because food is taking the path of least resistance out of the tube (which probably says a lot about what kind of physical block is happening downstream), so when I go to vent the tube, a little of the flush drips out but then food/drink starts making its way out but not all the way due to the consistency, so instead of getting relief I end up having to push all that stuff back into my system to keep the tube clear. In the morning it is just a steady stream of bile (sorry, gross), I could stand there for 10 minutes. 
Thank you for the tip on smart pill. I haven't seen it yet, and I'm a terrible pill swallower to begin with, but since my reversal(s) my anatomy is pretty normal at the moment, but you're right, I'm sure there are still pockets of narrow areas. Dr. Kroh is going to do the CT Enterography first, probably to evaluate some of that. 
I have nothing against meds, it's just the way they make me feel, the constipation, and I think when I lowered my dose I was convincing myself that I was getting better. 

Thank you again. If you're not already on my friend list, I'd like to add you. Please keep me updated on how you are doing, and you'll be in my thoughts & prayers!

I have a question - do you still have your gallbladder or was it removed?  I ask this for a few reasons and possible reasons.  You describe terrible pain and nausea which are symptoms of gallbadder disease which would be obvious for someone with a gallbladder.  It is possible to get gallstones after you have your gallbladder out and sometimes you had tiny ones in the ducts when you had the gallbladder out but they were tiny so they didnt' mean anything.  If gallstones get lodged in the ducts, they cause alot of pain and nausea - can cause pancreatitis.

The other thing I read about recently is people that have had there gallbladder out - most times the liver takes over the function within a few weeks and you can digest fats and no problems.  But in some and especially those that have gastric bypass, digesting fats are really dificult and you can get an accumulation of bile in your stomach and/intestines with no where to go and it can cause pain/nausea or severe diarhea called bile salts diarhea. - I see you dont have diarhea but I am sure there are other similar possibilities. 

I have also heard of people getting Sphincter of Oddi Dysfuction which can cause a lot of pain, nausea.  Normally the SOD would be diagnosed with an ERCP but we can't have this so you would need an MRCP - an MRI version.

I know this is all pretty far fetched but thought I would put it out there for you.

I wish you the best/

 Thank you for all the thoughts/ideas :) I have had my gallbladder removed, and at some point they thought I had the Sphincter of Oddi so I had the MRCP, and then the ERCP (which gave me a mild case of pancreatitis, and if that was mild I have a new appreciation for my ER patients with pancreatitis, very painful!)
I do have diarrhea, it's not pretty. The constant flow of bile from my G-Tube is disturbing for me, but my docs seem to think its a norm with the tube, especially in the morning. It's been crazy. Thank you again. I take all info in, and I do a lot of research (I'm sure we all do, right?)
Jules

 jbird - I just want to say that it is good to see that you are OK. I have been reading your story (I had VSG 10/24/11) and did a lot of reading on these boards before my surgery.  I am so sorry for all you have had to go through, and am always impressed at your positive attitude.  I hope you continue to keep us updated on your journey. 

 Thank you very much. I was just telling my friend today that I still see silver linings on clouds and find humor in stuff, as long as that continues I know that I'm still ok :)
I go stretches without logging in here, mostly because I'm busy in the hospital, but I keep coming back for the support and if I help one person in the process then it's all good!
Thanks 
Jules