A Letter From A GPer to A Friend/Family Member

I wrote this letter as a note on my public Gastroparesis Facebook page (www.facebook.com/emilysstomach) today, trying to get out how I feel while trying to get other people to understand how lonely gastroparesis can be. I wanted to get out my feelings and I wanted to try and let my friends and family know why I am the way I am right now. It's not because I don't want to go out, and it's not because I don't want to spend time with them - smells from a movie theatre make me ill and I'm worried I'll vomit in the middle of a movie or an outing, embarrassing myself. So, I wanted to write a letter to them to help them understand why I am usually home but that I don't like to be home by myself. I would definitely welcome company. This illness is isolating and it is depressing after a while because people give up on you. No one wants to call you to ask you to hang out knowing you will say no and no one really wants to come over to your house to hang out when they want to go out and see a brand new movie they've been waiting months for. So, I wanted to put how I felt down in words. You'll find those words below:



Dear Friends and Family,

We are fighters. We are overlooked because our illness is invisible...but the pain is visible behind our eyes if you look closely. We are strong...we have to be stronger than most in order to survive on a day to day basis. We are all from different walks of life. You may not know we suffer, but we do. Gastroparesis can touch anyone at any age - children, teenagers, adults, the elderly...and there still isn't enough research to determine why.


GP is caused when the vagus nerve is damaged, and nerve damage in any other part of the body is severely painful, so imagine having nerve damage in your stomach where you have a lot more nerves, sensitive nerves. Vagus nerve damage can be caused by a variety of factors, like diabetes, and other reasons.

People tell us gastroparesis shouldn't hurt, but it does. If other people go to the doctor and tell the doctor they have nerve damage in their knees or their back, they're treated for pain and it's understood that nerve damage there hurts, so why would nerve damage in the stomach, with the most sensitive nerves not be as painful or more painful?

If you meet someone with gastroparesis, please be kind. We are all fighting a battle to stay alive, not to starve to death, and to try to be as normal as possible. We miss being able to eat during holidays and to take part in things that we used to. Most of us can't because we lack the energy, which stems from lack of nutrition, but it's not by our choice.

If you know someone with gastroparesis, be kind to them. Give them a hug. Invite them out anyway and if they can't go out with you, please try to make an effort to go to them to spend time with them at their house. Loneliness is hard and so is isolation. We miss company and being social. Some of us just need to be near a bathroom but we miss our friends and family.

Most of the time we feel like we live in a prison we can't escape from. Just please try to be patient and try to understand what it's like walking in our shoes. It's a hard road, and all we need is a little bit of support and understanding. That would mean everything to us if people took a little bit of time to understand what we go through on a daily basis and still wanted to be around us, despite all of this. It would make us cry with joy just to have people understand, come over, and even do something low key like watch a movie with us. It would mean more to us than you would ever know, just that simple act of kindness.

We are not making excuses when we say we cannot go out. We are not trying to avoid anyone. We aren't trying to hurt anyone's feelings. We feel devastated enough that we have to stay home most of the time, but that doesn't mean you're not welcome to come over and visit. We would love that. So, for those of you who have friends with #DTP or Gastroparesis, please know that it's NOT you or anything you did - not your fault at all, we just cannot do the things we used to do and that kills us a little bit inside. It's just as hard for us to adjust to this as it is for you.

We want normal back, or as close to normal as we can get. So please, try to make the effort to come over to our house and distract us. We need it. We need the happiness you inject into our lives. We need you. We need our friends and family and support. You are our lifeline to the outside world. You don't realize how important you are to us, but you really are. Thank you for being a friend, even though we know it's hard on you. Thank you for being you.



Sincerely,
GPers Everywhere


**Please support my Facebook page, where I wrote this note to depict how I was feeling today, by kindly clicking on “like” to show your support and to raise awareness for gastroparesis on Facebook: www.facebook.com/emilysstomach

Laxatives - Friend or Foe for Gastroparesis

Laxatives and My Story

As always, do not try laxatives or anything without first consulting with your GI/Motility Doctor to make sure that this is the right course for you. According to Wikipedia, "Laxatives are foods, compounds or drugs taken to loosen the stool, most often taken to treat constipation. Certain stimulant, lubricant and saline laxatives are used to evacuate the colon for rectal and/or bowel examinations, and may be supplemented by enemas under certain circumstances. Sufficiently high doses of laxatives may cause diarrhea. Laxatives work to increase the movement of feces along the colon. Some laxatives combine more than one active ingredient. Laxatives may be oral or in suppository form."

I always see questions about laxatives when it comes to Gastroparesis. The most recent question that was asked by anonymous, "Does anyone use laxatives to manage their GP?"

From my personal experience, the Mayo Clinic doctor I saw told me to use Milk of Magnesia nightly. There are many different flavors of it, so I could pick and choose which one I wanted to take. In the end, I chose cherry. The image source can be found by clicking HERE.

After trying laxatives for about a month, it helped somewhat. My advice, if you are just starting out using laxatives to help constipation with Gastroparesis, try a low dosage first. Then, gradually increase the dosage until something happens. You don't want to start off with a huge dose and suffer for hours in the bathroom, which I'm ashamed to admit has happened to me before.

But, my body has the issue where nothing seems to really move down but everything comes back up. With the Milk of Magnesia, I was able to have a bowel movement maybe once a week and a half which is more than what I was doing before. However, my Mayo doctor wasn't impressed with that and had me up the dosage. I take it nightly but since I barely eat, nothing really comes out. My specific problem is that almost everything I eat or drink comes up, instead of going down.

So, I posed a question to the Gastroparesis Page on Facebook (www.facebook.com/greensnoteasy) and Gastroparesis groups on Facebook to ask about different people's experiences and results with Laxatives. I received an amazing amount of responses.

Jax replied, "I have a laxative regimen for severe slow transit constipation - Movicol liquid 40ml 4 x a day (easier than sachets) I take Paraffin Liquid 3 times a day - Glycerin Suppositories twice a day - Docusate 3 times a day - microlette micro enema (daily) - Bisacodyl (my colo-rectal Specialist swears by that) and various other stool softeners. However none of that moves by bowel so I need it removed. Even pre-op bowel cleaning meds/bowel wash outs don't work for me, I was admitted for a week to have them all to try and kick start the bowel with no success at all. The large amounts I take do cause me to have more nausea/vomiting at times. Some aren't too pleasant to taste and the volumes I take don't sit well. Sometimes I get the crampy feeling that I'm about to have diarrhea but it never happens as I'm so impacted (except overflow after a few months). Before it all got this bad, I simply used Senna (Senokot) 8 a day and they helped provide gentle relief."

Alison says, "Hi Emily. I have to use laxatives every day or else nothing occurs. I have found the best ones for me are bisocodyl (ducolax is the counter name). I have to take a minimum of 6 a day if I take less nothing happens & wen I need to take more then its a stay nearer to toilet facilities than usual. If I take just the 6 I go once any less than 6 I won't go at all. The only issues I get are cramping sometimes but that's usually if they haven't worked the day before. Tried picolax & a dissolvable sachet one before but they didn't do anything so ended up compacted. Not nice lol. It helps but adds extra stress of having to take extra meds but thanks GP is all I can say to that is lol."

Brittany responds, "I live on Miralax daily, take laxatives very often, and do enemas and suppositories also very often. This isn't related to my GP though. I've always had chronic constipation and if I don't take anything, I just don't go. I've been diagnosed with colonic inertia (slow transit colon), and there are talks of having my colon removed in my future."

Brandy says, "I used to before I started using 2 body by vi shakes as meals and just eating one solid meal/small snacks. I haven't had to in months now."

Jami replies, "I was diagnosed with colonic inertia around the same time I was diagnosed with GP. We realized I had been severely constipated my whole life after I developed a rectal prolapse (at age 21). Medtronic has another pacer that's the same as the gastric pacer except that its implanted in your back and helps to stimulate your colon. I got that. It didn't help with my colon (but helped my bladder issues tremendously, so we kept it in). I ended up having to have a colectomy (3 surgeries in one: colectomy, rectal prolapse repair, & pelvic hernia repair). That helped me so much. I never knew what it was like to have a BM everyday. Before the surgery I had a bm maybe once every 2-3 weeks (but I didn't know that wasn't normal bc I've never had a discussion with anyone about the frequency of BM's and because I've only gone once every 2-3 weeks for as long as I can remember). The biopsy of my colon showed that over half the cells weren't functioning at all, which basically means that my colon barely worked and that it might be paralyzed (possibly GP related)? I still have to take Mirolax occasionally but that surgery made my life much easier."


So are Laxatives a friend or a foe? Well, with Gastroparesis, they can be both. I usually view them as a foe because of all of the pain they cause - the cramping, waiting around, and pain. But, there are times that laxatives can be useful. So, I'll let you decide which camp you fall into - friend or foe.