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09-07-2014, 01:57 PM   #61
littlemissh
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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.
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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.
09-07-2014, 02:07 PM   #62
Stardust_Fiddle
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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.
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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
09-07-2014, 02:09 PM   #63
littlemissh
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I find the whole idea a bit daunting as far as permanent tubes go. Are they considering the Enterra gastric stimulator for you?
09-07-2014, 02:16 PM   #64
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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.
09-07-2014, 02:23 PM   #65
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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.
09-07-2014, 02:26 PM   #66
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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.
09-07-2014, 03:02 PM   #67
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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!
09-07-2014, 09:02 PM   #68
kimmidwife
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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.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
09-07-2014, 09:06 PM   #69
Stardust_Fiddle
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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.
09-07-2014, 09:27 PM   #70
kimmidwife
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Some info about it,
It seems to work by stimulating the autonomic nervous system,
http://www.digestivedistress.com/GES
09-08-2014, 08:00 AM   #71
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Thank you!
09-10-2014, 04:34 AM   #72
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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!
09-10-2014, 07:51 AM   #73
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I can't tolerate NG feeds but tolerate NJ feeds quite well.

Sorry you've had such a rough time unXmas.
09-10-2014, 08:16 AM   #74
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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!
09-10-2014, 10:34 PM   #75
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Sorry to hear unxmas that you are going through this , sending lots of hugs and prayers your way!
09-14-2014, 11:23 AM   #76
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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!
09-14-2014, 11:46 AM   #77
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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.
09-14-2014, 12:06 PM   #78
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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?
09-14-2014, 01:05 PM   #79
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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.
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.
09-14-2014, 01:17 PM   #80
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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.
09-14-2014, 01:53 PM   #81
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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.
09-14-2014, 03:55 PM   #82
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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.
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.
09-14-2014, 04:05 PM   #83
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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.
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!
09-14-2014, 05:51 PM   #84
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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!
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.
09-15-2014, 02:59 AM   #85
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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.
09-15-2014, 05:47 AM   #86
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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.
09-15-2014, 07:30 AM   #87
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I've not had an NJ tube - I want to try being tube free though!
09-15-2014, 08:13 AM   #88
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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.
09-18-2014, 09:16 AM   #89
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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.
09-18-2014, 09:20 AM   #90
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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.
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