The Spoonie Mummy
Living a happy and meaningful life with chronic illnesses and an ileostomy. Est. 2017
Gastroparesis Awareness Month
-Happy Friday one and all, we are almost at the weekend! Hope you have all had fantastic weeks, we have been very busy but I have also been keeping well rested and looking after myself.
Today I wanted to share a post about Gastroparesis. August is Gastroparesis Awareness Month. Until I met Ste I had never heard of it before, but it is something he suffers from alongside his Crohns Disease.
What is Gastroparesis?
Gastroparesis affects the stomach. It is a condition which causes the muscles in the stomach to slow down and not work as they should. This means they cannot break down food properly and also prevents the stomach from emptying properly. In severe cases, the stomach muscles are completely paralysed.
Gastroparesis is also known as delayed gastric emptying
Signs and Symptoms
- Feeling full after eating small amounts of food
- Abdominal bloating and pain
- Changes in blood sugar levels
- Nausea
- Vomiting (often of undigested food)
- Reflux pain
- Loss of appetite
- Malnutrition and dehydration
- Weight loss
Known causes of gastroparesis include poorly controlled type 1 diabetes and some types of surgery – weight loss surgery and gastrectomy (removal of part of the stomach)
Other possible causes include Parkinson’s Disease, some medication, schleroderma and amyloidosis
Diagnosis
Your GP will want to know about your symptoms and medical history and may order some blood tests. You may be referred for further tests including
- barium x-rays where you swallow a drink containing the chemical barium. Under an x-ray this will highlight the digestive tract
- endoscopy when a small camera on a thin, flexible tube is passed down your throat to examine the stomach lining
- gastric emptying scan where you will eat a small amount of food containing a very small amount of a radioactive substance. This can be detected on the scan and if more than 10% of the food is still in your stomach four hours after eating, gastroparesis will be diagnosed
- capsule test you will be asked to swallow a small capsule containing a camera which can transmit a recording of its journey through your digestive system
Treatment
Gastroparesis cannot usually be cured but there are a range of ways that symptoms can be lessened. Unfortunately, these do not always work well and 1 in 10 people can be completely disabled through their symptoms.
Dietary changes including eating smaller, more frequent meals, ensuring you chew your food really well, drinking while eating and eating, soft foods can help. Following a low residue diet may be helpful, eliminating foods which are harder for your stomach to digest such as fruit and vegetable skins.
Medication may be given although the effectiveness of these is questionable. Antibiotics and domperidone may be prescribed, but should only be used for short periods of time. Anti-emetics can be given to help relieve nausea and sickness symptoms.
Electrical stimulation is not funded by all NHS trusts, but may be used if dietary changes and medication are not helping. This involves having a small battery powered device being surgically implanted under the skin of your stomach. Two wires from this are attached to the lower muscles of your stomach. The wires deliver electrical impulses which help stimulate the muscles of the stomach to digest and move the food along in a similar manner to a pacemaker which controls the heart.
Botulinum Toxin (botox) may be injected into the valve between the stomach and intestine in severe cases of gastroparesis. This is a fairly new treatment.
Feeding tubes may also be considered. There are many different variations of these which include NG tubes, nasojejunal tubes and jejunostomies. TPN may also be considered in severe cases, when nutrition is delivered through IV lines. In a couple of weeks I am doing a series on the blog all about tube and TPN feeding so be sure to look out for that!
Surgery may also be considered. Some people have tubes inserted into the stomach through which gas can be released to relieve bloating. Two procedures, often considered as a last resort include a gastroenterostomy which creates a new opening between the stomach and small intestine) and a gastrojejunostomy (creating a connection between the stomach and second part of the small intestine called the jejunum) – these procedures are both designed to help food move through the stomach more easily
Living With Gastroparesis
Unfortunately, Ste has a very severe case and has tried many of the treatments on the list, with little success. He is sick multiple times a day and struggles to keep even small amounts of food down.
“No matter how many times I am sick, it is something I never, ever get used to”
Ste Walker
When food is unable to travel through the digestive system, it will generally build up before coming back out the way it came in. Ste is now back on TPN for nutrition.
Ste founded and helps run the Sick But Invisible campaign on social media to help raise awareness of invisible illnesses. Check out the Sick But Invisible Facebook page
Anna’s Story
Anna contacted me on Twitter after I did a shout out looking for people willing to share their Gastroparesis journey.
“Toward the end of 2012 I began to notice I couldn’t eat as much, solid foods were causing pain, and I began to lose weight without trying. I have Crohns, so the first though by me and my GI was that my Crohns was coming out of remission. Slowly over a year I got to the point that I couldn’t eat anything solid, and even shakes would fill me up quickly. I lost 23lb in that time and hit a low of 98lb. All the tests my GI ordered came back looking fine. I even had what became exploratory surgery in March 2013, I say became because it also showed no inflammation or other problems.
Once my GI ran out of tests he sent me to a research hospital. In late 2013 I had the GES done and was diagnosed with GP. I received very little help from the Dr however. She first prescribed a liquid antibiotic, it failed. I could only get in w/her every 3 months. She put me on gluten free, everything juiced or puree, sugar & carb free, and a couple other diets that didn’t help & some making me worse. She also put me on 150mg of Lyrics 3x a day, I was sleeping 18hrs a day, but wasn’t in pain.
I began to look into alternative treatments & started acupuncture and reflexology. W/in 2 months of starting the acupuncture I was no longer vomiting, I had been vomiting 10+ times a day. My nausea subsided, and I didn’t need my phenergan as much. Reflexology relieved me of the distention when I get bloated. I was to the point I could only wear cotton shorts/skirts/and dresses. Most of all I was able to start eating easy to digest solids. Crackers, bananas, flake cereals. Around this time the research hospital also had brought in a GP specialist. I requested to be transferred to him, but he just started over w/the same meds I had already tried. I asked to have the botox done, he said it wouldn’t help me. He even questioned if I had GP, because I didn’t have the typical symptoms anymore. I just couldn’t eat. He sent me to Atlanta to see a Dr to redo my GES & see if I was eligible for the G-POEM procedure. I still had moderate to severe GP & was eligible for the procedure. I decided not to have it done, too much travel, and travel expenses for a procedure that didn’t have a lot of information about long term effects…
When I got home I researched GP specialist & found one that had just started in my area. I left the research hospital, 3 years, no help, zero improvements, I was done. On my first visit my new Dr approved the botox. I found a pain management Dr that was doing spinal nerve blocks for my pain. For the first time in years I could eat turkey burgers again. When my pain blocks are working (3-6 months), and the botox is working (6-7 months) I do well. I still suffer from fatigue, I still struggle to keep muscle mass & endurance up. I walk a fine line of everything working well, or one thing not working it’s best & everything falls apart. Compared to when I was diagnosed, I feel like I am doing well, even at my worst. I still would like my life to be more predictable, both the pain block & botox when they wear off, it’s quick & I’m back to liquids & easy to digest solids. It takes about a month to get in w/my Drs, then to schedule the procedure, to getting it done”
Thankyou so much for sharing your story with us Anna and it is so nice to see you are getting some relief from the treatments available.
Follow Anna on Twitter
Trisha
Trisha is a fantastic blogger I was lucky enough to come across on Twitter. She writes about her life with Gastroparesis, reflects on her own health journey and raises awareness of this condition. Twitter username – @bundytr5
Check out her blog – Gastroparesis Crusader
I really hope reading this post has helped bring some awareness and understanding to this dreadful condition. Ste is happy to answer any questions people will have, so pop them in the comments and he will get back to you! Otherwise, have a fantastic weekend,
A very important topic to raise awareness for as not many know of it or understand how it impacts lives, let alone how it presents, is diagnosed or treated. Brilliant post and great links 🙂
Caz x
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Thanks Caz xx
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Great post about something horrible you just don’t hear about. As a health care professional I have cared for people suffering this and also have a good friend who is Type 1 diabetic who has been diagnosed with this. Thanks for the informative post xx
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Thankyou for the comment, it is good to hear people appreciate learning about this awful condition xx
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