Update and what's new with me!!!

Hi everyone! Hope everyone is doing great and if not, I hope things improve for you! I have had a few people message me wanting to know how things are going with me or what's going on so I thought I'd fill everyone in. But be prepared, it may be long winded as I type like I talk. Those that are coming Saturday will see what I'm talking about!!!!

I am still chugging around. On October 1st, I had an exploratory surgery to check for kinks or blockages in my intestines. They didn't find anything but because of me dwindling down to a mere 400-700 calories, I had a feeding tube inserted. I was discharged from the hospital the next day, and in the emergency room the day after that. Since then, it has been HELL!!!!

The feeding tube incision became infected and has stayed that way until even as we speak. It has been growing everything from Ecoli to Staph, and probably everything in between. I have been back to see the surgeon or his nurse practitioner 3 times and been back in the ER 5 times. I am still living off of phenergan & pain pills, (& having the nurses & dr's thinking I am being a pain pill seeker) for MONTHS.

Last Friday I had a small bowel series done. His thinking for this was maybe there was a kink or blockage that the surgery didn't show or that there was an ulcer in the blind stomach. So there I lay, getting fluoro & about 40 ounces of barium shoved, (& not so nicely) into the feeding tube. They x-rayed every 15 minutes until the barium reached the large intestines. The radiologist said that her findings (or at least what she was telling me) was that my blind stomach didn't empty as quickly as it should and thus causing some of the pain and bloating feeling. It made a bit of sense due to being diagnosed with Gastroparesis when my diabetes was out of control.

Today I met with the surgeon, Dr Bautista, to discuss the procedure from last Friday and to continue to work out my game plan. He hadn't seen the test results but went to look at them on the computer. THANK GOD FOR BEING CONNECTED TO THE HOSPITAL!!! He came back in saying interesting and not in a good way. The findings, his findings are that I am NOW suffering, well maybe have been suffering all along, from a pyloric stenosis. The area at the pyloric vavle is narrowed to the point that the stomach is not able to empty out. Who would have thought since NO food goes in there, well none did before the feeding tube, and only protein shakes now. He said that it still makes stomach juices, acid and gas and needs to have a way to empty it out. Well the way it's supposed to empty out doesn't do it in a normal timely way, thus causing a back up. It leads to an over full feeling and then when I try to eat orally, my "pouch" feels over full and I end up nauseated and not able to eat.

The plan.... I am scheduled for a scope through my feeding tube next Tuesday. This will show if the narrowing is just narrowing and can be stretched just like a stricture or if it is narrowed due to scar tissue caused by ulcers. He is leaning towards the latter. Either way, it requires a surgery because the tunnel that the feeding tube is inserted through is not wide enough for any of the tools that would be required to correct the problem. So another surgery will be scheduled when I see Dr Bautista on my follow up appointment for the next scope, which is Dec 1.

It was really my goal to have this damn tube out before Christmas. Now my goal is to just be home, out of the hospital for Christmas. During this entire process, the ulcer, the feeding tube, I have DEFINITELY slipped. I have gotten in the habit of eating things that normally wouldn't be so RNY friendly but thought... If I could stomach it, it stayed not and I didn't get sick feeling than it was ok, because at least it was calories and hell I needed them any way I could get them. WRONG! I know I need to and must get back on track and am definitely working on that. On top of all the stress that I have been going through, all the illnesses that I have been going through, I have had my parents, especially my mom & my Cameron. I have to fix this entire situation with me because my best friend, my mom now needs me. She was just last week diagnosed with Type 2 Diabetes. She is feeling ashamed & scared & I am scared that because of everything that I am going through, that 1) I will falter in taking care of myself, 2)that she will worry too much about me & not enough about herself & 3) that we will both fail ourselves and each other.

I know my friends here will pray for me and her and that the prayers will be answered. I thank you, in advance for that and I am sure my mom would too! I appreciate each of you listening to me! I also hope that my story can help at least 1 person and to remind everyone TO LISTEN TO THEIR BODY. No one knows you and your body like you!!! Listen to it!!!

OH ON BETTER NEWS!!! I have lost 2.5 lbs in less than a week and 2.5 lbs away from MY personal goal!!!

Oh and one more thing!! Can not wait to see everyone Saturday!!!

It seems really great that you are finally getting some answers.  Hoping it all works out soon and you are completely on the mend.

Perhaps you & mom can work on things together.  A lot of the diabetes issues can be worked on/helped out with proper diet & exercise which of course are things you need in your daily life also.  A great goal for both.

Have a great one!

Thanks for writing Court.

Her PCP diagnosed her with the Diabetes last Friday but left her all alone. He just told her to take her meds. Didn't discuss diet, the meds, how or when to check her sugar and didn't even prescribe a glucometer. So I am getting her in with my Endocrinologist immediately. The good news, if there can be any, is that her A1-C is only at an 8, which is NOT that far out of the normal range of 5-6 so hopefully, with the metformin and like you said, diet & exercise, we CAN get this under control.

You are so right about us both having similiar needs and can help each other. It is an awesome idea. I will definitely discuss walking, which is about all she can physically due do to a heart condition and what I believe is severe neuropathy in her feet. I am glad you mentioned that. Time for some intervention for us both.

As for me... I am trying. I REFUSE to continue to live off of nauseau & pain pills! It is not a life. Not with a 9 yr old.

Thanks so much for writing. I can always count on this site!!

Thanks for updating us TM.  My youngest daughter had pyloric stenosis.  SHe was spitting up from bith and my mom thought it was really weird.  Then came the vomitting after she ate.  I thought it was reflux.  So at her six week checkup, I brought it up to the Dr. She dismissed it has a stomach bug.  I tried to tell her no, this is not like a virus and she has been like this sincebirth.  She told me to just give her pedilyte.  The next day she was projectiling and was even doing that with the pedialyte.  I took her in to the ER and they diagnosed with the the pyloric Stenosis andhadher in surgery the next day.  I switched Peds right after that and she told me that Pedilyte is absorbable and so if she is able to keep it down then she is fine if not then she needs to be seen.

Her surgery was a small icesion on her belly.  

I hope and pray this is the answer for you and this will fix your current problems. 

I am so sorry you have had such a tough, tough time.  Just know that we are all cheering you on, and wishing you nothing but the best!

Wow !   You have definately gone thru alot.   You have a great attitude.   You continue to have my prayers for you and your surgeon,   

Will not be able to make it Saturday,   Enjoy

What a blessing it is Theresa to be getting answers, have a plan in place & hopeful that it comes together & things get better. Wishing you all best with it all. Thanks for sharing as there are others who can learn from your experiences.

It sounds like you have been through the wars Teresa but maybe the end is in sight. Can't be much fun with a feeding tube in.  But you do have a good doctor who is going to get to the botton of this for you and maybe some of your past illnesses caused these problems that are now only just being apparent.

On the positive side - you are much lighter and healthier than you have ever been, so anesthetic is not the big danger it was before and you can recover faster from a surgery...

My thoughts are with you and praying for a final diagnosis and recovery!

Jackie