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kimmidwife

kimmidwife

Joined
Sep 19, 2010
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My daughter was just given a secondary diagnosis of Gastroparesis. I have been communicating with a few others on the forum with this same problem and I thought we should start a support group so if others have it they can join us and give us advice and suggestions.
 
I'll join. I've had gastroparesis for years. Nearly all the treatment seems to be dietary recommendations. There are meds for reflux, but there really needs to be more meds for the gastroparesis itself!
 
I was just diagnosed with gastroparesis today after an abnormal gastric emptying scan. I'm not surprised, though, as I have suspected gastroparesis for over a year. I was finally able to get my new GI to order an emptying scan (none of my old ones would even consider it, even at Mayo Clinic). I'm glad I pushed for the test, because now I know why I am losing so much weight and am nauseous all the time.
 
Essie,
Welcome to the group. We haven't had much activity. What are they doing to treat you? My daughter is really struggling.
 
Hi, all. After being symptomatic for a year and growing steadily worse, I have finally been referred to a motility specialist, whom I will be seeing on May 20. I am sure that I have gastroparesis, and I am looking forward to a solid diagnosis and a treatment plan because I am miserable and very underweight (and still losing weight). :ybatty:
 
My GI gave me erythromycin but I am concerned it will interact with a few of my meds and worsen my existing heart rhythm problem, so I haven't started it yet. I am talking to my doc about it tomorrow.
 
I found out I had delayed gastric emptying from my first pillcam. It sat in my stomach for eight hours. So I was tested, and sure enough. Although my doctor calls it a mild delay. But at four hours, I still had a third of the eggs and toast still in my stomach. So I'm honestly not sure what that counts as. Anyways, glad to see there's a support group on here now! :)
 
I am awaiting a radio nucleotide gastric emptying scan to see if I have gastroparesis.

I have all the unpleasant symptoms and requiring ongoing nasojejunal feeding initially thought to be due to active disease. I had a dummy pill cam which was in my stomach 22 hours later so they are now wondering about gastroparesis. I hope not!

The request was sent urgently but I am not sure how long it will take as it is not done at my local hospital.

Everly this is the criteria I found about how gastroparesis is graded:-

'Delayed gastric emptying was graded according to the gastric retention at 4 hours: mild (≤20% gastric retention at 4 hours), moderate (>20 to 35%), and severe (>35%) (13,14).'

From this paper

'Gastroenterology. Author manuscript; available in PMC Jan 1, 2012.
Published in final edited form as:
Gastroenterology. Jan 2011; 140(1): 101–115.
Published online Oct 20, 2010. doi: 10.1053/j.gastro.2010.10.015
PMCID: PMC3089423
NIHMSID: NIHMS247177
Clinical Features of Idiopathic Gastroparesis Vary with Sex, Body Mass, Symptom Onset, Delay in Gastric Emptying, and Gastroparesis Severity

The NIDDK Gastroparesis Clinical Research Consortium (GpCRC)*†
 
I have a question maybe someone could help out with...I am on levsin for IBS, but it is an antispasmodic. It basically slows down digestion. Should I talk to my GI about that possibly worsening my gastroparesis, or is it harmless? Anyone have experience with that?
 
I second XMDMOM about the Levsin. It can worsen the GP.
Stardust,
I am so glad you finally have an appt, I really hope they figure something out to help you!
GP sucks. We are waiting to hear about an appt for my daughter with the peds motility people in Ohio.
 
I saw online that sometimes motility disorders (gastroparesis) can be colitis-induced. I am having trouble finding anything definitive, though. Curious to hear if anyone knows about this? Certainly a question I will be asking my GI next appointment.
 
I can't speak about colitis, but I am convinced that my Crohn's caused my motility issues. I didn't have problems before I had Crohn's, and since my Crohn's is in my stomach and duodenum and it took over six months for Humira to begin making a difference, it makes sense to me that it did significant damage. :(
 
I agree with you that IBD has to play a role in motility disorders. How can it not? I only recently started having motility issues, since my most recent flare. I think that we just have to wait for science to catch up with our gut feelings...
 
Saw consultant today for results of GES. I have gastroparesis. He thinks from IBD or post surgery where I had perf and oversew.

I have had an NJ tube since november last year (except for a 4 week reprieve when I pulled it out in a fit of pique to see if I would be ok), so it looks like a permanent PEJ, and /or gastric pacing if I can get funding and if the gastroparesis guy from the Royal London agrees.
My consultant ringing him and also St Marks as he is not quite sure whether PEJ is a good idea in me (because of GD Crohns which is much better on Humira, last scope showed inflammation throughout stomach but no ulcers now)

If not it would be long term nj tube which would mean 6-8 weekly scopes for innumerable years.
Wants to give erythromycin a go but isn't convinced it will help and contact Abbott to see if a known side effect of Humira.

Deep joy….not. Bit depressing really.
 
littlemissh said:
Saw consultant today for results of GES. I have gastroparesis. He thinks from IBD or post surgery where I had perf and oversew.

I have had an NJ tube since november last year (except for a 4 week reprieve when I pulled it out in a fit of pique to see if I would be ok), so it looks like a permanent PEJ, and /or gastric pacing if I can get funding and if the gastroparesis guy from the Royal London agrees.
My consultant ringing him and also St Marks as he is not quite sure whether PEJ is a good idea in me (because of GD Crohns which is much better on Humira, last scope showed inflammation throughout stomach but no ulcers now)

If not it would be long term nj tube which would mean 6-8 weekly scopes for innumerable years.
Wants to give erythromycin a go but isn't convinced it will help and contact Abbott to see if a known side effect of Humira.

Deep joy….not. Bit depressing really.
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Sorry to hear about your situation! Are you still able to eat some solid food and/or drink liquids with a tube? I have chronic intestinal pseudo-obstruction and am fighting having a feeding tube placed for nutrition and calories (I see my specialist in a few weeks). I'm on Humira too. Right now I'm trying Remeron for the motility, and the next drug my doctor mentioned trying (if my insurance will pay for it) is a cannabinoid medication. Having a motility issue on top of Crohn's really stinks, and I feel your pain. :ybatty: I hope that things work out for you! :ghug:
 
Thanks. I can tolerate some fluids but solids more often than not make me vomit. Sometimes I can have a small amount and am ok and other times even a small amount makes me sick, and I have fairly persistent nausea.
I have tried domperidone and am currently on metoclopramide and ondansetron which ease it a bit as long as I don't eat.
I tried to avoid a tube but lost too much weight. Even with a tube, I have been losing weight over the last few months, so I had my regime changed today.
My gastro didn't mention remeron (mirtazepine in the uk) though the gastroparesis consultant may. Cannabinoids are not legal as yet in the UK.
I guess time will tell. The thought of never being able to eat more than a few mouthfuls is a bit depressing.

Good luck with avoiding the tube, I hope you manage it.
 
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I do liquids for at least one "meal" a day, more when I'm really flaring. Cannabis isn't legal in my state, but apparently the medication (I forget the name) is because it's just got cannabis as an ingredient. However, there's a high likelihood, according to my doctor, that my insurance will not cover it, in which case I wouldn't be able to take it because I sure as heck can't afford it! I've lost a lot of weight too; my bmi is around 15 now, but I'm not ready to get a tube yet. It's nice to know that you can still do some solids and liquids while on a tube though. I sure wish they'd find a cure for all of these digestive diseases, and for other ailments as well!
 
xmdmom said:
Are the pacemakers they use for gastroparesis out of the question for people with Crohn's?
Click to expand...

I don't know as yet. My local gastro doesn't think so, but is taking advice from an IBD specialist at St Marks Lomdon and the gastroparesis guy.
I seem to be being sent all over the country at the moment. He is also asking about the safety of a PEJ in me as I have GD crohn's…but feels there is little option really
He is ringing me once he has had some discussions, hopefully not too long.
 
You're one of the only people I've heard of who has gastroduodenal Crohn's, which is the form that I have as well. There must be a link between that and the motility disorders. I just had Xrays last week to check for enteropathic arthritis and am awaiting the results. Such fun! :ybatty:
 
Stardust_Fiddle said:
You're one of the only people I've heard of who has gastroduodenal Crohn's, which is the form that I have as well. There must be a link between that and the motility disorders. I just had Xrays last week to check for enteropathic arthritis and am awaiting the results. Such fun! :ybatty:
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I have Enteropathic Arthritis. I was diagnosed with that a few months ago along with fibromyalgia, although I've had both for a few years.
 
I do have fibromyalgia for sure, and also Raynaud's. I have all the symptoms of enteropathic arthritis, so we'll see what the Xrays say. However, I'm already on Humira, which supposedly treats arthritis, so I don't know if there's another medication I can take for arthritis or not. :confused2:
 
I was on sulfasalazine for the arthritis for a while. That is also used for Crohn's, and can be used with Humira, so perhaps that may be an option?
 
XMDMOM,
The gastric pacemaker is being used in people with Crohn's. We are waiting to meet with a specialist to discuss Caitlyn's options for treatment including the pacemaker. We are hopefully seein him in July.
 
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.
 
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! :)
 
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!
 
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.
 
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. :ybatty: 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.
 
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. :)
 
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.
 
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. :ybatty: I'm relieved to get in sooner but not looking forward to the prep!:tongue:
 
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.
 
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.
 
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.
 
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! :)
 
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
 
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 *
 
bhoffman said:
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 *
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That's fabulous! I'm so happy for you! :panda:
 
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?
 
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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.
 
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.
 
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. :shifty-t:
 
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!
 
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. :)
 
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.
 
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!
 
The surgeon isn't happy for me to have a GJ tube due to GD crohn's (and duodenal perforation etc)and says that a jejunostomy tube is less easy to displace etc. It was always a decision between GJ and jejunostomy and they feel the latter would be a better option for me.
 
Ok, that makes sense. I have GD Crohn's as well, and the whole feeding tube situation does concern me a bit. I liked the idea of being able to vent the stomach with the g/j tube, though; I'll have to bring this up to my doctors.
 
I find the whole idea a bit daunting as far as permanent tubes go. Are they considering the Enterra gastric stimulator for you?
 
Permanent tubes frighten me, but if it's going to keep me alive, I'll do it lol. I'm not a candidate for the stimulator because I don't have vomiting with my gastroparesis.
 
By the way, a good tip - Get some throat spray and vaseline to sooth when you first have it. I find that as the tube gets a little older it can be a bit uncomfortable and find sucralfate liquid is the best to sooth my throat/oesophagus.
Also I have adapted a ruck sack for my feed/pump etc so that it is less conspicuous to carry around.
Try and either get a spare pump or charge when you are sitting around at night. My electric cable reaches our toilet at home so I plug in overnight and just take it all to the bathroom when I need them.
 
Cross posted, I agree with it being worth it, I have just got used to it now having had it for so long. If it goes on much longer I would prefer a more permanent tube so that I can avoid 6-8 weekly scopes and a nasal tube.
 
Thanks for the tips! I bought chloroseptic lozenges and Afrin the other day and will be getting a Neti pot too. I'm pretty sure that we have some vaseline around somewhere. I definitely want to get some sort of portable backpack, just for my own sanity, so that I can get out and about a little and don't go nuts being stuck in the house! ;)

I'm very impatient with medical procedures, and I will be much more inclined to go with a permanent tube if I have to keep having the nasal one replaced. Time will tell!
 
Stardust fiddle,
Neti pots can be dangerous. I would not reccomend them. Also Caitlyn's gastroparesis doctor did not say you have to be vomiting to get the stimulator. She never vomits and they said she is a candidate. You may want to get another opinion on that.
 
Interesting. From what I understand, the stimulator doesn't actually increase the stomach's contractions or make it work any better, it just decreases nausea and vomiting. I will bring it up with my doctor and get his thoughts. :)
 
I'm currently on TPN, but eating as well. I was put on it because my bowel perforated the other week, so I was on total bowel rest for a few days. You'd think TPN would be a solution for gastroparesis, but it's not - my doctors are worrying about the line going septic because I've got a bit of a temperature. It's very risky, and I don't think it would be a long-term option or something to use outside of hospital. I'm beginning to think there's no real solution. I couldn't tolerate NG feed, and having had this recent emergency surgery and scare, I really don't want any more tubes or anything of any kind inserted!
 
Sorry to hear about your struggles, unXmas. I hope that things turn around for you! TPN would be an absolute last-case scenario for me because of the risks, including the risk of sepsis. I'm hoping that the nasal tube will work out and I'll be able to progress to the G/J tube. Just hope that it doesn't kick my Crohn's out of remission!
 
Bad GP morning. My daughter is on steroids for her Crohn's right now and of course it is making her hungry which leads her to eat more then normal which leads to vomiting! Not been a fun morning! :(
 
I hope that things settle down for her soon! I've been delayed getting my feeding tube because of insurance red tape--waiting on them to approve or deny. :shifty:
 
Poor Caitlyn, it must be horrible to feel hungry and not be able to eat to get rid of the hunger pains. I still try and eat as I reckon my stomach may eventually completely lose its function if I don't, but it is horrible when you know you will end up vomiting.

Stardust, one of the good things about the NHS is that there is no worrying about insurance. That said, you have to get special approval for a lot of crohn's meds and also for the gastric pacemaker, though not feeding tubes and nutritional stuff etc, so i can sort of understand how you feel. I hope they get a move on because you will fade away. Are you still losing weight?
 
littlemissh said:
Stardust, one of the good things about the NHS is that there is no worrying about insurance. That said, you have to get special approval for a lot of crohn's meds and also for the gastric pacemaker, though not feeding tubes and nutritional stuff etc, so i can sort of understand how you feel.
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Sorry to go off topic, but which meds do we need special approval for on the NHS? I don't remember it ever being a problem, but then I've not been on all that many.
 
Any of the biologics, some investigations like double balloon endoscopy, gastric pacemaker. In some areas capsule endoscopy. Thats about it I think. I haven't had any issues with funding but if you are a borderline case going by the guidance it can be more difficult.

The one I fear the most is that if you achieve full remission on a biologic, after a year the guidance says you have to stop it….despite there being about a 40% chance of relapse…scary.:ack:
 
I would be incredibly upset if I had to stop biologics after achieving remission!

I think that I'm probably still losing a little weight. I stopped weighing myself because at this point the number isn't going to make a difference, and it's too depressing anyway. The nurse and doctor are very concerned though, and I'm rather afraid myself because being at such a low body mass, apparently my heart could stop at any time and my organs could start shutting down. I've been feeling worse, with more pain and more fatigue and weakness. I just want to sleep all day, yet I can't actually fall asleep. So annoying. I just hope that my insurance approves the tube, and soon, and that it works. :ybatty:
 
littlemissh said:
Any of the biologics, some investigations like double balloon endoscopy, gastric pacemaker. In some areas capsule endoscopy. Thats about it I think. I haven't had any issues with funding but if you are a borderline case going by the guidance it can be more difficult.

The one I fear the most is that if you achieve full remission on a biologic, after a year the guidance says you have to stop it….despite there being about a 40% chance of relapse…scary.:ack:
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Ah ok, I've not had biologics. The only problem I've had getting a capsule endoscopy is that I keep needing emergency surgery/ending up in hospital before they can get it done. It was ordered at the start of the summer - I heard nothing of funding problems, and I don't even want it! I've been tested so thoroughly lately and can't believe it will tell me anything new.

Let's hope they'll update their guidelines to keep biologics working for those that need them.
 
Stardust_Fiddle said:
I would be incredibly upset if I had to stop biologics after achieving remission!

I think that I'm probably still losing a little weight. I stopped weighing myself because at this point the number isn't going to make a difference, and it's too depressing anyway. The nurse and doctor are very concerned though, and I'm rather afraid myself because being at such a low body mass, apparently my heart could stop at any time and my organs could start shutting down. I've been feeling worse, with more pain and more fatigue and weakness. I just want to sleep all day, yet I can't actually fall asleep. So annoying. I just hope that my insurance approves the tube, and soon, and that it works. :ybatty:
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I hope the tube works for you. I'm incredibly underweight. My BMI was 10 at the start of the summer, and I've gained a few kilos since then. If it's any reassurance at all, I just underwent major, emergency surgery and am fighting off an infection, all at this weight, and my heart's doing fine, touch wood, and so are my other organs, so have some hope in the body's capacities for resilience.

My experience with the NG feed was bad, but nowhere near the TPN disaster bad. If the worst happens, NG tubes are lower risk and easy to take out if needs be. My stomach just didn't like the feed for some reason, but I think that's very individual.

Now I'm back to gaining weight with just good old fashioned food and very happy to be doing so. Eating is easier since this surgery - I had problems building unbeknownst to me inside, and although I still have gastroparesis, I'm tentatively optimistic about gaining some weight now. I think there often are solutions out there if you can just find the right one(s) for you - I hope the tube will be that for you! I get weighed tomorrow morning and am anxious to know what it's going to say!
 
UnXmas said:
I hope the tube works for you. I'm incredibly underweight. My BMI was 10 at the start of the summer, and I've gained a few kilos since then. If it's any reassurance at all, I just underwent major, emergency surgery and am fighting off an infection, all at this weight, and my heart's doing fine, touch wood, and so are my other organs, so have some hope in the body's capacities for resilience.

My experience with the NG feed was bad, but nowhere near the TPN disaster bad. If the worst happens, NG tubes are lower risk and easy to take out if needs be. My stomach just didn't like the feed for some reason, but I think that's very individual.

Now I'm back to gaining weight with just good old fashioned food and very happy to be doing so. Eating is easier since this surgery - I had problems building unbeknownst to me inside, and although I still have gastroparesis, I'm tentatively optimistic about gaining some weight now. I think there often are solutions out there if you can just find the right one(s) for you - I hope the tube will be that for you! I get weighed tomorrow morning and am anxious to know what it's going to say!
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Wow, I'm glad that you're able to gain some weight through oral intake! Our bodies are incredible, aren't they? Thank you for your encouragement. It scares me that I've been feeling so weak and tired, and I am hoping that I'll get the tube soon and that it will work and help me to at least feel a little stronger.
 
Well, my weight was the same this morning as it was last time I was weighed last Friday, and I'm quite pleased with that, given the circumstances. I've not been pushing myself to eat well past discomfort levels, not like I was when I was in hospital to gain weight, so I'm happy that I can at least maintain without excessive discomfort. I'm still finding eating is gradually becoming easier, so hopefully soon I'll be comfortable eating a little more and can start gaining.

The NG feed gives you all the vitamins and things you need, so it should make you feel healthier. For me, and I think this is true for everyone having NG feeding, they start you on quite a small amount - I began by only getting a couple of hundred calories per twenty-four hours from it, as it's supposedly easier on your system that way. In particular, if you've not been able to eat or keep down much for a while, your stomach may not be used to food. Also, there may be a concern about refeeding syndrome if you've had very little nutrition; people are usually given certain supplements to help prevent this when starting feeding - do you know if your doctors are planning this for you? It wasn't an issue for me, as although I was underweight I was still eating a fair amount, but my doctors prescribed me the supplements anyway. But yeah - don't worry if you don't get immediate results as the amount of feed given at first is very small, and will probably be gradually increased over a couple of weeks depending on how well your body's coping with refeeding.
 
Hi Un Xmas, sorry your weight has stayed the same. Have you been tried with a nasojejunal tube, as it bypasses the stomach you may well find it works for you.

I have never had a BMI as low as 10, I thought I was skinny enough when it was 14!! I hope you start putting some weight on soon. For me it was the NJ tube which has helped, though been a slow process as every time I get really sick and end up back in hospital I lose weight again. But my BMI on NJ feeding for nearly 12 months is now 17, so much better. My dietician wants it to be a minimum of 20, so a way to go yet.
 
My tube will be a nasal-duodenal, so it will bypass my stomach, thankfully. I can't tolerate much orally, so an NG tube would just compound the problem in my case.
 
Stardust,
Any update on the tube approval?
Caitlyn was switched over to entocort and is doing a little bit better. She does eat just very small amounts. She also keeps losing weight. :(
 
I'm glad that Entocort is working for her. It did nothing for me. I found out yesterday that my PCP's office didn't fax the paperwork on Friday like they were supposed to, but rather didn't send it until Tuesday. I probably won't hear anything now until next week because the motility nurse is not in tomorrow. :(
 
littlemissh said:
The one I fear the most is that if you achieve full remission on a biologic, after a year the guidance says you have to stop it….despite there being about a 40% chance of relapse…scary.:ack:
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I know that in the US we don't have this regulation. I can't imagine how frustrating and scary that would be! I guess I'm actually thankful for the American healthcare system for once, ha.
 
Hope this finds you all doing as well as possible! Due to insurance nonsense I ended up having to go to the Cleveland Clinic instead. I will be having an NJ (nose to small intestine) tube placed on Monday and will be admitted to the hospital for a few days to make sure I can tolerate the formula and to try to stabilize me. I have "severe protein-calorie malnutrition" and am quite anemic and thus also have to have a peripheral catheter placed in my arm for iron and nutrients. If I tolerate the formula, I will have the feeding tube for 2-3 weeks and then--probably in early November--have a permanent surgical jejunostomy, and shortly after it is placed I will have it made into a "button" so that the tube won't be sticking out of me so far. If I can't tolerate the formula, I will instead have to go on TPN; hopefully this won't be necessary because it is very risky. The doctor is hopeful that with the supplemental nutrition from the feeding tube and jejunostomy I will be able to get back to a healthier weight over time. The surgery will be as non-invasive as possible, but there is always the chance that it could kick my Crohn's out of remission, and we are hoping that that won't happen. Fortunately, there is a Starbucks on the campus, so if I go MIA during my hospital stay, the nurses will know where to find me!
 
Good luck stardust, I really hope you can tolerate your feed and that you can avoid TPN.
Just be aware what feed they are using. I cannot tolerate the usual feeds and do much better on elemental (028extra)or semi-elemental feeds (perative) as they are 'pre-digested'. So it is worth having a discussion with your dietician whether to start you on elemental. I had to decant the cartons into a flo-care container but it was no big deal. My dietician is brilliant.

I had my temporary pacing wires in on tuesday, it wasn't as straight forward as it should have been (won't bore you all with the details) but it seems to be having an effect. There was no change for 2 days and I was panicking but my vomiting frequency has reduced and nausea much less. I am not convinced I will manage the 2000 calories to avoid a jejunostomy though. Still, its early days. I meet with the surgeon in 10days to have it taken out and decide what next.
 
Hi, all. I hope that you all had a nice Thanksgiving! I realized that I haven't updated on here for a while. I couldn't tolerate the NJ tube and threw it up repeatedly within hours of getting it, so I ended up having a jejunostomy and getting a J-tube. Long story short, we discovered that, in addition to gastroparesis, I have significant intestinal dysmotility which prevents me from getting more than 120 mL of formula per day via my J-tube. Thus a couple of weeks ago I had a Hickman catheter surgically placed and started TPN. I'm also still running my J-tube as much as I can tolerate to keep my intestines working. Ideally, I would like to be able to eventually get off of TPN, but it doesn't look promising so far. My electrolytes keep crashing--my latest ER trip was Wednesday by ambulance--so I'm waiting to hear from my doctor about whether they need to tweak my TPN formula. Meanwhile, my stomach and intestines are wreaking havoc. :ybatty: My main goal is to stay out of the hospital, as I seem to be on a revolving door there!
 
It sounds like a rocky road for you, I hope you are feeling better.

How painful was it having the jejunostomy? Did it take long for the pain to settle and you could get back to normal activity?
 
The jejunostomy was rough on me. I was in a lot of pain for several weeks and was hospitalized for 10 days after the surgery, but I've only taken Tylenol because my body can't tolerate pain meds. It's actually still sore, which was compounded by the fact that I recently had it converted into a mic key button; they literally ripped the old tube out--no sedation or numbing--and my body is still recovering from that. All of this is not helped by the fact that I'm underweight and on immunosuppressants, either, so for someone else it might not be nearly as bad. Are you having the jejunostomy?
 
I'm not sure, but it is looking increasingly likely.
I had the pacemaker fitted 3 weeks ago,which has helped with the vomiting so only sick a couple of times a day. Unfortunately I had complications straight after surgery and had to go back to theatre and then ITU for sepsis.
I eventually got home and then developed pneumonia which I am now on treatment for though now back out of hospital. They also found a mass in my lung which they are discussing on monday what they feel it is and what should be done.
As a result of all this I have lost weight since my pacemaker surgery and NJ feeds cut right back. I am hoping they give me more time to try and rectify my weight as I can't face another surgery right now.
Was you jejunostomy done under GA or local?
 
Ugh, I'm sorry that you've been through the wringer, too! I completely understand about not wanting more surgery at the moment. If you can afford to wait (if your BMI isn't too low, etc.), I would before going under the knife again. I wish I had had time to wait between my J-tube and TPN. My jejunostomy was performed laparoscopically, so I have four incision points in my abdomen along with the stoma. What they didn't tell me is how painful it would be and how much it would compromise my ability to do anything because you use your abdominal muscles for just about every move you make. I still have trouble bending over, but the pain does get better over time...it just takes longer than I'd like.
 
My BMI is much better than it was as I have had 12 months NJ feeds so now 17. I am only just getting less pain from the pacemaker surgery- a 10cm incision where the pacemaker unit was inserted into the abdo and then the smaller 2cm incision where the laparoscope went in. It hasn't been helped being opened up again and then having a cough from the pneumonia. Honestly I sound like an old woman.
To have some more holes right now fills me with dread. I think that the priority is finding out what the mass in my lung is right now.
 

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