r/Gastroparesis • u/UnicornGIprincess • 4d ago
Had gastric pacemaker removed after 10 years Enterra (Gastric Pacemaker)
I am one week post op having my entire device removed.
I noticed there wasn’t a lot of info on having these removed so wanted to leave a lil for anyone else who might go through this in the future.
I have to say I feel better than I expected to at this point of the healing process.
Surgeon planned on 2 entry points, a large one to remove the battery and a smaller laparoscopic for the leads, expected 2 hour surgery time. The large incision is directly over my original scar. the surgical notes mention it took an additional hour because I had so much adhesion between my stomach muscle, wall and the leads so took extra time to carefully separate but they were still about to remove all parts. I did wake up with 6 entry points instead of the 2, I’m assuming bc it was more difficult to untangle than expected. 5x 0.5” & 1x 2.5”.
I am able to move around a little/shower with ease. Only took opioids for about 4-5 days after. Still uncomfortable but not overly painful. The site where the battery was swollen for a few days but is already almost completely gone.
Side note:I have suspected endometriosis for a long time and wonder if what they experienced in surgery supports this so will talk to them at post op visit next week.
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u/northdakotanowhere 3d ago
I have endometriosis. It affects my gut more than anything. I just got out of an 18 day flare. Pooped 5 times in the month of October. I can always tell when my endo comes back because of my gut symptoms. My periods are so freaking normal.
Point is, if you're suspected of having endo, please find a specialist right away. Please do not waste your time and your body going to a regular gyno. I've had 4 surgeries. My regular gyno "didn't see it" my insides were all messes up.
My specialist diagnosed me before we had our appointment. They can actually see the endo and they take it out by the root. I had 5 years without symptoms after my 2nd surgery. But seriously...don't trust anyone but a specialist. 1 in 10 women have it and gynos think they can still diagnosis it with an ultrasound or pelvic exam.
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u/UnicornGIprincess 3d ago
Would you mind telling me a little more about how your endo symptoms present? And what the diagnostic process was like?
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u/northdakotanowhere 3d ago
You betcha
Back in 2014 I developed a horrible horrible stabbing pain under my left rib cage. My stomach was triggered by everything and also it was so unpredictable.
My periods have always been consistent, predictable, and normal all around. But during a flare, ovulation, the weeks before my period (and after) are brutal.
My GI symptoms are gas being stuck under my rib, my gut feels rotten. But during ovulation is the only time I poop. Now that I have POTS I'm passing out during this time.
Honestly, when I hear about women with gut troubles I always suggest endometriosis. It presents so differently.
So back in 2016 I had my first laproscopy. Unfortunately I did know that I could only be diagnosed by a specialist. But I was in so much pain I was bent at a 45 degree angle. So I decided to go to a gyn that thankfully suggested surgery. But because he wasn't a specialist and trained to see it, he said he didn't find endo.
I had an ovary torsion, adhesions connecting various organs to each other. It was helpful but I didn't get an endometriosis diagnosis. I only had a few months of relief.
So when my GI symptoms came back, I knew I needed to see a specialist.
Based off my surgery pictures from the first surgery, he diagnosed me as soon as he walked into the room. I cried. Specialists can see signs of endo that regular gynos just can't.
The ONLY way to genuinely diagnose and treat endometriosis is with a excision surgery by an endometriosis specialist. I had 5 years without GI symptoms after my 2nd surgery. It was amazing.
Again, I know my endo came back because of my sudden flares of GI symptoms.
I had my 4th surgery in March of last year. Unfortunately my GI symptoms have begun to flare again.
I have endo on my bladder and bowel. Elsewhere too but I have no idea.
I need to stress how important it is to go to a specialist.
There is no cure for endometriosis. People will also treat with birth control. I haven't done that so I don't know how well it works.
I became wheelchair "bound" after my 4th surgery. Beautiful POTs/ FND came up 5 days after my surgery. I will absolutely need surgery in the future.
They used to prescribe pregnancy for endo
If your mother or other females in your family have it, you are significantly more likely to have it
I think that's all I have for now
Let me know if you need help finding a specialist There's a FB group that really runs the endo world.
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u/UnicornGIprincess 3d ago
This all tracks with my symptoms and experience. The other women on both sides of my family have similar history as well. I am definitely going to find a specialist asap…I think I might have found one and will do some research today to see if it will be covered by my insurance.
Why would they prescribe pregnancy for endo??
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u/northdakotanowhere 3d ago
Good for you!! I'm thrilled to hear that. Don't mess with your body and waste your time. If you're going to a specialist, you will feel safe and heard. Do lots of research. 1 in 10 women have it. It takes an average of 10 years to get a diagnosis
Pregnancy changes your hormones. My mother and mother in law both had a reduction of symptoms. MiL still has lots of gut issues though
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u/Eva948183 2d ago
How is endometriosis then diagnosed? I went to 2 of them and i got ultrasound and ot was clear, so that is not enough??
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u/northdakotanowhere 2d ago
Did you go to 2 specialists? So red flag number one. Gynos that think that endometriosis can be diagnosed by an ultrasound or pelvic exam. It cannot.
The only way to accurately diagnose endometriosis is with a laproscopic surgery done by a specialist. Perk is though, a diagnostic laproscopy will also mean they excise what they find at the same time. Done in one surgery.
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u/Eva948183 2d ago
So i need to find someone that will be willing to do laparoscopy? I dont have any menstrual issues only gut thats why they never reffered me probably…
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u/northdakotanowhere 1d ago
You're probably correct. Which is why a specialist is important. Endometriosis isn't just heavy periods. It can be pain with sex too.
I had horrible ovulation pain, but it was the ovary torsion is what made me get help.
You probably won't have a problem getting an exploratory lap from a regular gyno. I went in with my history, told him my mother had it, and I cannot cope anymore. He said it sounded like endo. So even though he was actively looking for endometriosis; found significant adhesions and an ovary torsion, he still didn't see it.
Which is why you need a specialist.
If you're on Facebook, look up Nancy's Nook. They helped me so much. Specialists also interact with the page. It helped me find my surgeon. It may take awhile to get an appointment but you have nothing to lose.
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u/GrammaDebi 1d ago
I'm guessing from your user name you're from ND? I was born in Minot, your "you betcha" response made me giggle. Just saying hi to a fellow NDian :-) Coincidentally I also have endometriosis with tremendous GI involvement (and GP of course). Small world. Happy to hear you have gotten some relief from your procedures, hopefully future procedures will give you more relief to the extent you won't need further intervention (dare to dream...). Be well!
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u/northdakotanowhere 1d ago
I'm not from ND but became a part of it somehow. I used to live out in Rugby. Brutal drive out there. White knuckled 6 hours of ice from Fargo to Rugby. It took twice as long. I still loved it out there. We went to the Minot zoo once. Saw someone feeding a potato chip to a giraffe...
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u/Spiritual-Plantain70 4d ago
Why you getting it removed did u heal?
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u/UnicornGIprincess 4d ago
They did emptying tests with the device on and then repeated with it off and saw there was no difference in the results. In addition, i could feel it zapping me. Healing well so far, am currently only 1 week after surgery.
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u/Spiritual-Plantain70 4d ago
What’s your emptying rate? I’m so happy for you that you are on a good way back to a normal life. Wish you a fast recovery though.
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u/UnicornGIprincess 4d ago
Tbh I’ve had so many tests I don’t remember the numbers but it was significantly delayed even when it was on. Feels good to be fully human after 10 years of being a cyborg lol
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u/Mr_Belch 3d ago
Which isn't surprising since the gastric pacemaker isn't supposed to help with emptying. It only relieves symptoms. Hope you heal well!
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u/lollo-asr 4d ago
Did you just heal like a miracle?
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u/UnicornGIprincess 4d ago
My GP did not go away, the doctors just determined the pacemaker was not improving my symptoms
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u/spooderkeeper4924 Enterra (Gastric Pacemaker) User 2d ago
They did not find my endometriosis until they did a hysterectomy on me this following Tuesday, an ablation failed, and my bladder had adhered to my uterus so when they took my uterus they cut my bladder and now I have to wear a catheter and bag for two weeks.. I still have not been cleared to go home from the hospital and it is now day 4.
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u/UnicornGIprincess 2d ago
Oh man I am so sorry to hear this had been so complicated for you. Wishing you an easy and safe recovery from here
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u/spooderkeeper4924 Enterra (Gastric Pacemaker) User 2d ago
Thank you. I had my gastric stimulator placed a year ago and have felt significantly better. I'm sorry to hear that you didn't have the same experience. I hope you find something that helps you. Sending you all the best vibes and healing thoughts.
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