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07-06-2014, 08:13 AM   #31
littlemissh
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I am due to see the gastroparesis team on friday and am a little anxious to say the least.
The consultant will hopefully tell me what he feels should be done. I have been told that I need a jejunostomy for feeding, instead of the NJ tube I currently have, but my local team are not sure if it is safe due to GD crohn's.
The thing that scares me most is the thought that gastrectomy is one of the 3 options available (do nothing and never eat again, gastric pacemaker, gastrectomy).

I hope he can give me some plans and not just say I need a million more tests.
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
07-06-2014, 09:45 PM   #32
kimmidwife
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Good luck! I will be praying he has a good plan for you!!!
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Crohn's Dx'ed Sept 08
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07-08-2014, 12:00 PM   #33
Stardust_Fiddle
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Littlemissh, I hope that you are able to work out a good plan with your doctors!

Kimmidwife, how is Caitlyn doing?

I just started Marinol, a cannabinoid, today for my gastroparesis. I am really hoping that it will be beneficial and allow me to eat more and gain some weight; otherwise I have to get a feeding tube. Since Marinol has a little bit of marijuana in it, I'm wondering if it might help my Crohn's too. Here's hoping!
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Conditions: gastroduodenal Crohn's disease; chronic SIBO; bile reflux; gastroparesis; intestinal dysmotility; hiatal hernia; hypogammaglobulinemia; IBS; chronic migraine; fibromyalgia; sensory processing sensitivity; Raynaud's; congenital cataracts
Current treatments: Humira biweekly, Azathioprine 50 mg once daily, Xifaxan 550 mg daily on alternating weeks, Omeprazole 20 mg, Cymbalta (for pain), VSL#3 Probiotic, Iberogast, Remeron, Zofran; permanent TPN
07-08-2014, 04:14 PM   #34
kimmidwife
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Stardust fiddle,
She is not doing great. I will be really curious to hear your experience with the marinol. Keep us posted. I am keeping my fingers crossed that it works miracles for you!
07-08-2014, 04:36 PM   #35
Stardust_Fiddle
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Sorry to hear that. I am also taking Remeron, which helps slightly but not nearly enough. I started using crystallized ginger too, along with an herbal liquid supplement called Iberogast. The Iberogast is available on Amazon (downside is the cost) and seems to help me. It's a prokinetic, and it doesn't taste good but you just have to mix 20 drops with a little bit of warm water and drink it. It might be worth a shot.
07-08-2014, 10:06 PM   #36
kimmidwife
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Thanks I will look into it.
07-09-2014, 08:58 PM   #37
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Incidently, it appears that I have gastroparesis and dysmotility of my small intestine/pseudo-obstruction. My doctor doesn't want to do testing because my body is so fragile right now, but I definitely fit the bill for both. I'm definitely thinking this is linked to my Crohn's because my stomach and duodenum are the areas where I had ulcers and chronic inflammation. It will be interesting to find out what they see at my endoscopy/colonoscopy in September.
07-09-2014, 09:29 PM   #38
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Keep us posted and let us know how you are doing!
07-09-2014, 09:32 PM   #39
Stardust_Fiddle
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I will, thanks! So far, no real side effects from the marinol other than more fatigue and a little spaciness. I wasn't as nauseated today, whether that is due to the marinol or just a good day.
07-09-2014, 09:33 PM   #40
kimmidwife
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That sounds good , really hope it works!
07-09-2014, 09:35 PM   #41
Stardust_Fiddle
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Me too! I wish we were all doing better!
07-11-2014, 11:11 AM   #42
littlemissh
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Well I had my appointment, he was very well informed. His unit has placed the largest number of Enterra devices in the UK and published data etc. He is also a very experienced laparoscopic surgeon, he said that despite previous abdo ops he thought it very, very unlikely he would have to convert to an open procedure.

It didn't go as I expected, I thought it would be a discussion of further meds I might try etc. But he had read all my notes that had been forwarded and GES results and said that really the only viable option is the Enterra gastric pacemaker.
He explained that it is not a cure but in those who have a good response reduces nausea, vomiting and enables more food to be eaten.

Some people still need supplemental enteral feeding but he wants to continue with NJ feeds until we know how successful it is. If I need supplemental feeding he feels a PEJ would be unsuitable and he would place a surgical jejunostomy.

His unit always puts in temporary pacing wires first which are placed endoscopically and stay in for a week. 50% have a good enough response to proceed with the permanent Enterra device. This involves an overnight stay, is placed endoscopically and the op is about equivalent to an appendicectomy.

He said that GD crohn's was not a contraindication to surgery but gd crohns is rare and gastroparesis is rare, the combination is even rarer so little data is available. I will be a bit of a guinea pig.

So I am now on the list for the temporary pacing wires. He doesn't want to do it before my holidays in early august so it will be after that.

I think I have covered most of what he said, if you have any questions, feel free.
One thing I forgot to ask was how will I manage with an NJ tube AND the pacing wires for the 7 day trial. Will they be in the same nostril etc.
07-11-2014, 11:41 AM   #43
Stardust_Fiddle
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I was wondering about the viability of someday getting the Enterra device if needed, and will be praying that it proves effective for you! Having GD Crohn's and gastroparesis together is certainly no walk in the park! I just got my endoscopy/colonoscopy bumped up from September 3 to August 8 because I'm having recurrent Crohn's symptoms again. I'm relieved to get in sooner but not looking forward to the prep!
07-13-2014, 10:55 PM   #44
kimmidwife
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Littlemissh,
I am wishing you good luck! We meet with the specialist in two weeks to discuss if Caitlyn is a candidate for the pacemaker or what other therapies might be available. I also read about a vagus nerve stimulator they are using in Europe that is not available in the US. I can't remember the name right now. But it sounded interesting.
Stardust,
I hope the colonoscopy goes smoothly and easily.
07-22-2014, 08:47 AM   #45
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My DD (non crohn's) has been suffering from frequent nausea for some time now. I was wondering more specifically what the symptoms of GP were.

My daughter (age 9) complains of a 'throat feeling' nearly every evening. Usually around the time she goes to bed. She says it doesn't feel like anything is stuck in her throat she is just nauseated but says she doesn't feel it in her stomach, just throat. She has no pain or bloating but will occasionally have heartburn after dinner, a tums seems to fix the heartburn quickly. She says she feels slight nausea before she eats, it feels better after she starts eating and is able to eat normally and feels well after. The nausea starts several hours later. She lays in agony for about 2 hours and then drifts off to sleep. She wakes up feel great the next morning.
At first we thought she was just not drinking enough water during the day and so her food was not digesting well because of the lack of water. But now we are not sure. Does any of this sound familiar?

She would occasionally have this problem over the years, and then it would seem to go away. It oddly seems worse in the summer. She is very active and eats a healthy diet.

Any advice or insight would be appreciated. She will go for her 10 year check up in 2 weeks and I will have a chance to chat with the dr then.
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07-22-2014, 09:31 AM   #46
kimmidwife
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It sounds more like reflux to me. The nausea with GP usually starts during meals or immediately after. Does she have any constipation? That is also a symptom of GP. I would definitely ask the doctor about it though.
07-22-2014, 11:54 AM   #47
Stardust_Fiddle
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That doesn't sound like GP to me, either, but it definitely wouldn't hurt to ask the doctor. There is such a thing as esophageal dysmotility, though, so you might want to ask about that as well. Keep us updated!
07-22-2014, 03:00 PM   #48
littlemissh
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It sounds more like reflux (GORD). For me the symptoms of GP are fairly persistent nausea, very full after a few mouthfuls of food and vomiting after most solids, occasionally after liquids.

I have copied the GP score -sorry I can't get the whole score table for some reason but it gives the symptoms. Each symptoms is scored 0-5.

None Very mild Mild Moderate Severe Very severe
1. Nausea (feeling sick to your stomach as if you were going to vomit or throw up) 0 1 2 3 4 5
2. Retching (heaving as if to vomit, but nothing comes up) 0 1 2 3 4 5
3. Vomiting 0 1 2 3 4 5
4. Stomach fullness 0 1 2 3 4 5
5. Not able to finish a normal-sized meal 0 1 2 3 4 5
6. Feeling excessively full after meals 0 1 2 3 4 5
7. Loss of appetite 0 1 2 3 4 5
8. Bloating (feeling like you need to loosen your clothes) 0 1 2 3 4 5
9. Stomach or belly visibly larger 0 1 2 3 4 5
08-07-2014, 07:42 AM   #49
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I have gastroparesis and crohns disease. My crohns is in remission, however I have a gastric electrical stimulator called Enterra Therapy made by Medtronic for my gastroparesis. I had it implanted last August and it has been a God send. I was throwing up for over a year, had the surgery, in the last year I have vomited only 3 times. I'm not nauseated like I was either. Note that results vary from person to person, so my success may not be the same for others. However, it is totally worth talking to your GI about.

* Eligability requirements do apply *
08-07-2014, 09:42 AM   #50
Stardust_Fiddle
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I have gastroparesis and crohns disease. My crohns is in remission, however I have a gastric electrical stimulator called Enterra Therapy made by Medtronic for my gastroparesis. I had it implanted last August and it has been a God send. I was throwing up for over a year, had the surgery, in the last year I have vomited only 3 times. I'm not nauseated like I was either. Note that results vary from person to person, so my success may not be the same for others. However, it is totally worth talking to your GI about.

* Eligability requirements do apply *
That's fabulous! I'm so happy for you!
08-07-2014, 01:41 PM   #51
Johnnysmom
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I think my DD does have GERD. She went for her 10 year check up and she was very under weight for her height and Dr was concerned about her symptoms. She ordered labs and a fecal cal. We have gotten the labs back but are still waiting on the fecal cal. Everything was normal range except:

WBC range 4.5-13.5, she had a 4.2
Lymphs range 38-42, she had a 54
Neutrophil Abso range 1.8-8.0, she had a 1.51
Basophils range 0-1, she had a 2.

Dr. prescribed Prevacid for 2 weeks. We are waiting for fecal cal but she doesn't seem very concerned about the labs. My son's GI is uncomfortable with his WBC and neutrophil level right now and his are higher than hers. Might just be because he is on meds.

Anything else you all think I should ask about?

Last edited by Johnnysmom; 08-07-2014 at 01:50 PM. Reason: I hadn't finished typing:)
08-07-2014, 01:52 PM   #52
Johnnysmom
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Also….
She has maybe mild occasional constipation. Nothing like what my son has. She does get mouth sores and had blood in her stool once.
09-06-2014, 12:39 PM   #53
littlemissh
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I have a date for the trial of the gastric pacemaker (neuromodulator-Enterra). It is the 30th september. I really hope it works and I can finally eat something and not bring it right back, as I have been for the last 10 months.
The trial wires are placed endoscopically and stay in place for 10-14 days. If it works I will have the permanent one placed into my abdomen.
09-06-2014, 04:22 PM   #54
Stardust_Fiddle
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I hope that the neurostimulator proves effective in reducing your symptoms! I saw my motility specialist on Thursday, and I will be getting a nasal-duodenal feeding tube placed as soon as they can fit me in. They will place it via endoscopy and then admit me for a 24-hour observation period. If I can tolerate the formula, I will most likely have a permanent G/J tube surgically placed in the future. My doctor said that we have already exhausted all of my other treatment options and that there is no other alternative for me at this point. I am so underweight and malnourished from the gastroparesis that without intervention my body will completely shut down within weeks or months at the most. Scary stuff.
09-06-2014, 08:09 PM   #55
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Thinking of you Stardust! Please let us know how everything goes hun! I'm assuming that TPN isn't a good option for you since you are going to try tube feedings? Hugs and prayers coming your way!
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09-06-2014, 09:33 PM   #56
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Thinking of you both stardust and little missy. I hope it goes well for both of you!
09-07-2014, 08:15 AM   #57
Stardust_Fiddle
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Thank you! Essie, tube feeding is the better option for me because my immune system is compromised and TPN would be very risky. If tube feeding fails, I may not have a choice, but we are hopeful that the tube will be effective.
09-07-2014, 01:14 PM   #58
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Ok, right that makes sense. Fingers crossed for you!
09-07-2014, 01:28 PM   #59
littlemissh
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Stardust-I have a new nj tube placed by scope every 6-8 weeks. (since november)
You do get used to it though it does take some getting used to the stares you get from people.It has helped me improve my weight a little though my BMI is only 17 still, it was 15, so much better. You will have more energy once you get some nutrition.
I get my next one on tuesday. If the stimulator does not work or not enough I will have a jejunostomy.
09-07-2014, 01:49 PM   #60
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Six to eight weeks seems like the time frame that others have mentioned for changing the tube too. I hope to be able to progress to a g/j tube in the future so that I don't have to deal with the inconvenience of a nasal tube. What will a jejunostomy do for you if you have to have it? I hope that the neurostimulator works!
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