Dysphasia, Gastroparesis, and Hydration Concerns

Hope you are all having a wonderful morning. I'm getting an ileostomy on May 1st, and I'm starting to get really nervous, all the what-ifs. I guess my biggest (at the moment, lol) is I have dysphasia and gastroparesis and am just worried about getting proper hydration. Anyone else have dysphasia and/or gastroparesis? And how are you doing?

One of our members will come to help you.

IGGIE

Thank you 🙏🏼

G-Day J,

Is the swallowing a physical problem or a psychological problem? If it's psychological, you could try hypnosis. Sometimes I have to think about how to swallow; it sounds unreal but true. It's like your brain forgot the program. I am thinking out loud, but it could help.

Regards, IGGIE

Not exactly sure, to be honest. It might be both. It might be a complication from my gastroparesis and GERD. I wish I could do hypnosis, but I don't have the money for that 😢

My Ostomy Journey: April | Hollister

Hi J, I have some trouble swallowing, especially breads and cake. I believe this is due to taking two different muscle relaxer type medications, and like Iggie said, I consciously think about swallowing even liquids, so I sip, not glug down, whatever liquid I have at the moment.

Talk with your doctor and see if he can have it done on compassionate grounds.

IGGIE

Yeah, I sip as well ❤️

Do you have CD or UC? What's the purpose of the stoma?

Rectal dysnergia, slow colon motility, and constipation

JJ, you have reason to be concerned. Getting an ileostomy is going to complicate your conditions immensely. Normally after an ileostomy, your small intestine adapts somewhat to absorb more fluid and electrolytes, but gastroparesis will prevent that — therefore, no help from your intestine to prevent fluid and electrolyte loss. Dysphagia makes drinking liquids difficult; it requires a lot of effort to stay adequately hydrated. In addition, you choose to have an ileostomy with its high fluid requirements — up to 2 liters per day. Dysphagia and an ileostomy have conflicting needs. Dysphagia often requires modifications to fluid thickness to ensure safe swallowing, potentially limiting volume intake, while ileostomies frequently lead to increased fluid and electrolyte losses, demanding increased intake to prevent dehydration. This leads to extreme difficulty in maintaining hydration. To combat your pelvic floor disorders, you have chosen to have an ileostomy in opposition to your surgeon's suggestion that a colostomy potentially is the best course of action considering you suffer from gastroparesis, dysphagia, and pelvic floor disorders. With youth on your side, if the colostomy did not work out, you could later choose to have an ileostomy. You will definitely have more difficulty with an ileostomy than if a colostomy worked for you.

— Proud owner of lifesaving ostomy, vintage 2023, V6 colostomy engine.

Hi, I have an ileostomy (7 years) and gastroparesis (2 years)... I have my gastroparesis in check by a drug called Mestinon, and I use a Vagus nerve stimulator 2x a day (Truvaga). I saw a specialist at Stanford Motility Clinic about 2 years ago... This medicine has changed my life as it helps to empty the stomach. If you would like to chat about what works for me, please reach out.... I also use these amazing ginger candies called Tummy Drops, which were developed by a gastroenterologist. I suck on them after every meal, and they help aid with my digestion. The ileostomy takes a while to adapt, but it saved my life. Try to stay positive; it's half the battle! I'm sorry you have to deal with all these diseases, but we can find a way to live with them that works for us. I have! And so you can too! I eat 5 small meals a day every 2-3 hours, and it seems to work for me. I wish you the best! And know there is support for you out there! :)

Thank you so much. If you don't mind, could I message you in a little while?

Hi JJ. Sounds like a neurological issue? I was born with MS, and food always gets stuck in the left side of my gullet. My muscles move weirdly. My entire body is spastic! My colon gave out. I kept getting dehydrated and developed bilateral kidney stones. I got weak after hiking. I switched to hydration mixes and learned to sip, not gulp.

I'm sorry to hear about your MS. My mom has MS as well. My neurologist said my scans don't show MS.

I must be missing something. You say that JJ “chose” an ileostomy over a colostomy against her dr's recommendation. Where did she state that? I understood she was getting an ileostomy, but I don't see where she had some choice to make. Maybe I missed an earlier posting. Just curious. Thanks.

It was in another thread:

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=34582#274397

— Proud owner of lifesaving ostomy, vintage 2023, V6 colostomy engine.

I took a Sitz marker test, which is the test that shows how fast your colon is working. After 5, if there are 5 or fewer markers, they consider that a normal test. But there were still two markers left in my ascending and descending colon. They should all be towards your rectum. My doctor said he would do either the colostomy or ileostomy. He stated he'd do either one, but that colostomy had fewer “complications” as far as dehydration and stuff like that. So I originally was going to get the colostomy, but then I went back and talked to him because I honestly feel in my heart that my large intestine isn't working properly. He agreed because all the markers should be toward your rectum, and mine weren't. Plus the fact that I have to take Motegrity, Linzess, senna, and sometimes Dulcolax just to have a bowel movement. That's why he is saying I'm “choosing” the ileostomy.

Happens to me sometimes too, but I just thought it was me. It kind of freaks me out, especially when I'm out eating with others.

I get dry mouth and feel thirsty a lot, so I keep mints in my purse and use them when I have run out of all of my liquid or don't want to drink much before bedtime. There's something I think is called Liquid IV that I've seen at Costco that you add to water. I can understand your apprehension because just the fact that the bowel is removed sometimes leads to more dehydration, and you need to make sure you drink more. Having the other problems added on top would be more cause for concern. Is that why you are getting the ileostomy?

Yeah, I'm getting the ileostomy due to rectal dysnergia and slow colon.

Good luck and keep us up to date.

IGGIE

Will do, and thank you 😊

Similar-ish … I don't have a concrete label on a couple of things… my GI motility issues seem to be more global—something autoimmune attacking my digestive organs. So far, I'm sans colon, appendix, and gallbladder (all removed in separate surgeries). For the esophageal motility, what tests have you done so far?
My GI specialist heard of a medication being used in a different study that was helping with esophageal motility disorders, and thankfully that has been working well for me.

For reference, all my sitz markers were left… the colorectal surgeon asked if she had me take 2 capsules, and when I told her no… the look on her face followed by the discussion of the colon never ever getting better… I think we had the surgery date scheduled before I left the room.

I have an IRA now (end of small intestine attached to what is left of the rectum). I have the option of returning to an ileostomy if this connection fails for some reason, and I'm okay with that ☺️

Is your number of bowel movements 6/day or more with the IRA? I have never heard of an autoimmune disease attacking GI organs — pretty scary; does it have a name?

Jjones, how are you?
When you feel up to it, let us know how you're doing after your recent surgery. ☺️

A traveler, are you considering getting an IRA? If you put that in the search, something I or someone else has posted may answer some questions.

IBD (inflammatory bowel diseases) falls under autoimmune diseases/conditions, but they are not the only ones that affect digestive organs. I have a couple of autoimmune conditions, but there is not enough research at this time to know if they contributed to the demise of my evicted organs.

No, not considering an IRA. I was surprised at the number of organs you had lost. I have not studied IBD much, but I do intend to study it more. Before my ostomy, I was diagnosed with diverticular colitis, not to be confused with diverticulitis. I resolved to live with it, but it worsened, and I had surgery. After many setbacks, I was blessed with an ostomy, and I have never looked back. I am an avid reader — I read 6 to 8 hours a day. I focus most of my reading on gastrointestinal, cardiovascular, artificial intelligence, and sports. I prefer scientific journals, scientific trials, and books for the gastro and cardio reading. I use the internet to keep up with sports and AI.

— Managing my "life investment" in preferred low volatility stocks since 2023.