Find us on Google+ Gastroparesis: March 2013


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Saturday, March 23, 2013

Medication List that Makes Gastroparesis/DTP Worse

Jeannie from the GASTROPARESIS Facebook Page contributed to this list.

These are the medications that can make Gastroparesis and DTP worse.

MS Cotin

Salvinorin A
Apomorphine - Apokyn
Bromocriptine - Parlodel
Cabergoline - Dostinex SR
Epicriptine – Similar to Bromocriptine

Trofranil – Trofranil PM

Amlodipine & Atorvastatin - Caduet
Amlodipine & Benazepril – Lotrel
Amlodipine & Valsartan – Exforge
Diltiazem – Cardizem, Dilacor, Taztia, Tiazac
Nicardipine – Cardene
Nifedipine – Adalat, Procadia
Nisoldipine – Sular
Verapamil – Calan, Isoptin
Simvastatin – Zocor


I want to add some of my own that the Mayo Doctor told me to stop taking because they do effect motility:

Bentyl (Dicyclomine)
Levsin (Hycosimine)
Zoloft (makes vomiting worse)

My entry about my first visit with the Mayo Clinic is HERE.

So, if you are on any of these drugs, check with your GI doctor and see if there is something else that you can take. Also check the side effects of your medicine to make sure that nothing will make your symptoms worse.

Source can be found HERE.

Thursday, March 21, 2013

Follow Up with my Regular GI Doctor

Here's what's interesting about doctors, they always have conflicting opinions. The GI doctor read the notes of the Mayo Doctor right in front of me and he mentioned to me that he disagreed and didn't think the NISSEN SURGERY would help me at all. He said that I've been on acid reflux medication for years. The only way this stomach surgery would work, in his words,

If you came to me saying that you had acid reflux and the medicine worked for you but you were tired of taking pills, then I'd do the surgery. But, as of now, you only have a 10 to 20% chance of it working. You need to come back to me before they do any kind of surgery on you because it's not going to work.

I trust him and trust his judgement. Instead, he wants me to follow up with Mayo, have some blood work done (because my lipase levels have been really high), and come back to him to talk about what to do next. He suggested a procedure called ESOPHAGEAL MANOMETRY. Basically, it's a procedure that involves a tube going into your nose and into your stomach for 24 hours. It tests the vomiting to determine if it is stomach acid or actual vomit.

However, his opinion seems to be that my lower bowels are paralyzed or have lack of motility, not my stomach itself. I'm starting to think that too - but nothing seems to go down. Everything seems to come back up. However, my belly was really swollen when I saw him today. On the scale it looked like I had gained weight because my stomach is so bloated, it looks like I'm carrying around a watermelon. I haven't eaten hardly anything but I have been drinking a lot of water. He noticed the bloating too because I am usually lighter on the scale and my face has thinned out.

If you look at pictures of me from last year or the year before compared to now, my face has really thinned out. I've lost a pants size.

He called in stronger anti-nausea medicine for me. I hope that will bring me some relief. This past week has been horrible but I remain optimistic. Something good has to come from all of this. That's going to be my advice for the day:

Be your own advocate. Research things and don't always do whatever the doctor tells you. But, hang on to hope because it's there. Someone will figure this out - and when they do, we're going to throw one hell of a party! =)

Saturday, March 16, 2013

Radio Interview, Isolation Help, and Updates!

Do you ever feel alone? You know that's not true logically, but you can't help but think it. It's little things like when you try to call someone and they don't answer or if you try to make plans around your illness but have to cancel them.

I have friends who tell me that I'm a strong person, but I don't feel strong. Being alone is an irrational fear that people who suffer from any kind chronic illness. You can't escape, no matter how many people you talk to or invite over. Being chronically ill is challenging enough and maintaining a social life is pretty much non-existent.

That's one of the challenges of a chronic illness. Sometimes, you feel alone and down and think that no one understands what you're going through and that you're alone. That's not true. You're never alone.

I have my husband, my family, my fraternity, and my other family on the GASTROPARESIS Facebook page. All you have to do is reach out to someone to talk to. And it's when you feel the most alone that you should break out of your comfort zone and talk to someone. It really does help. I'm seeing a therapist that my doctor recommended because I can't do this on my own right now. Sometimes it's OK to ask for extra help when you need it. It doesn't make you a failure or anything like that - it makes you stronger. It takes a strong person to ask for help when you need it. Talking to someone removed from the situation can be a bit comforting and it helps you to vent your frustrations. In doing that, it makes you feel almost free and emotionally lighter. If you are feeling sad, depressed, anxious, or just overwhelmed, I would recommend seeking help for the short term. This will help you to get over these hurdles, as it's helped me.

If you can't afford a therapist, do the next best thing - reach out to a friend. All of the admins on the Gastroparesis page are available to talk. We will listen to you because we know what you're going through. It really helps to have an understanding ear as well. I choose to write to help me deal with some of my frustrations but there are other outlets. You have to find the best one that fits you.

Speaking of outlets, I was on my friend Jason's radio show today to speak out about Gastroparesis. I tried to do Gastroparesis justice. If you missed the radio interview, you can listen online HERE. I was a bit nervous but I hope that I was able to tell my story without getting off topic too much. Jason is great and I'm so glad that I was able to do his show today!

I've had some really bad stomach attacks the two weeks. I've been very miserable and in a lot of pain. I'm trying to do my best but nothing's really staying down - drinks or what I've been trying to eat. I had a huge dehydration headache last night that wasn't going anywhere and my stomach felt like I had been drop kicked in the abdomen. I even pulled a muscle in my abdomen and my back yesterday - so I had issues moving. I'm glad I get to rest this weekend but I feel bad that I'm going to miss St. Patrick's Day tomorrow. I would love a green beer and to go out and hang out with friends but that's not in the cards for me. My lips are all cracked and chapped from dehydration and I've cut the corners of my mouth, but I'm not sure how I managed to do that.

All in all, I'm hanging in there and I still remain optimistic. I need to call the Mayo doctor to tell him that the medication he gave me isn't really working. I feel bad but still feel hungry. However, I am scared to eat.

Friday, March 8, 2013

My First Flight with GP & Updates for this Week

My fraternity brother decided to have his birthday shindig in Fort Lauderdale because they are known for their Tiki drinks. So, this meant that it was going to be my first time flying with a SPINAL CORD STIMULATOR and with GP. Needless to say, I was a bit nervous. My husband gets hassled every time he goes to the airport because he has an insulin pump - so what were they going to do to me?

We got there and checked in early. Everything actually went pretty smoothly. We checked our bags and then went to security. I took off my shoes and put all of my stuff in the bins (the body scanners were disabled, which is good because of the implant, I can't go through them) and went through the metal detector. The TSA agent yelled at me because I left my stuff in the bins to go through the machine, not realizing that my husband was behind me keeping an eye on my things. When the TSA agent realized this, he apologized to me.

We boarded our flight and took off for Florida. The engine smell was making me very ill, but I was in the window seat out of three seats, which were all full. So, I couldn't exactly get up to run to the bathroom. I had a bag, just in case. I just felt extremely nauseated but didn't vomit. I was quite proud of myself.

When we got to the hotel, they didn't give us a room block like they said they were going to, so all of my fraternity brothers and friends were scattered all over the hotel. I sat by the hot tub while I was talking to friends and this rude security guard comes out of nowhere. We were being quiet. There were even a group of teenagers sitting by us and they were quiet too. The front desk said we could stay in the hot tub until 12am but the security guard herded us like cattle out of the pool area and locked it. Then, he spent the rest of the night patrolling it. I wanted to punch him in the face, mostly because I don't get out much and I REALLY wanted to hang out with my friends.

So, the next morning, the hubs and I got up and went to the hot tub, since it was open now. We met a friend there. They ate ice cream in the hot tub while I just soaked. The water felt SO good on my poor muscles. Bending over to vomit really does take a toll on your back and my SCES is still healing in place, too.

After the hot tub, we took a nap. When he woke up, it was time to dress for dinner which was at the MAI KAI RESTAURANT.

I was looking forward to hanging out with my friends and just being OUT and having FUN! However, we were lead to go back to a private-ish room. I ordered one Tiki drink, which I regretted later, but I wanted to celebrate actually smelling the beach and being with my brothers and friends. We were down there to celebrate one of my good friend's birthdays! Anyway, the waitress was great in the back area where we sat. Our group had to be broken up into three parts for dinner and the show that the restaurant puts on. We were in group three.

Finally, we were seated for dinner. I found soup that I could eat that wouldn't make me sick that I was pretty happy about. However, we had BBBBBAAADDDD service! The guy took an hour to fill up our water glasses and never checked to see if we had refills. He wouldn't get his manager when we asked. One of my friend's food was too spicy that even he couldn't eat it. My soup was also really spicy and I couldn't eat it either. Usually, that kind of soup isn't spicy at all. The manager comped some of our meals but we refused to go to the show after that because of the bad service we got.

So, we all went back to the hotel room and goofed off.

I pushed myself too hard this past weekend and the past few days. I cleaned my room because I couldn't take it anymore. I think I managed to get the weird spells out of the carpet. All the laundry is done, which is awesome because we had mountains. I've been vacuuming the room daily to help Jesse with his allergies. Oh! And we hired a maid! She'll be here Wednesday afternoons. I'm very happy about that because I usually don't have the energy to clean. I wanted to clean our room though to do something nice for my husband since he's been so good to me. He's been patient and understanding about me getting sick so the least I can do is the laundry and to clean up our room so he can walk without tripping on stuff! lol

Still getting over pneumonia. Everything still makes me a bit tired. Trying to get up and move around as much as possible but that wears me out too.