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Sarah, just an idea for you now that you know you have gastroparesis - I know a girl who has really severe gastroparesis (I suspect yours is severe too), and she got some sort of implant which stimulates the stomach. She said it helps somewhat - she's still considered permanently disabled, but she said it helps her feel somewhat better than she was feeling. I googled to find out more about the implant and came up with this:
http://www.cpmc.org/about/e-health/11-05 ges.html
I think it's a relatively new type of technology, or at least I hadn't heard of it until my acquaintance told me about hers.

Blu, good luck tomorrow! I hope you can get some proper answers very soon.
 
A gastric stimulator is what Cat is talking about. We have not discussed it for my daughter, but they are less likely to use it for pediatric patients. We did see a motility specialist though, an adult GI, and he was more inclined to put in a permanent feeding tube for her (at the time, she had an NJ tube).

I do know of one kiddo who was in the pediatric trials for the stimulator and has done REALLY well with it. She was vomiting many times a day from very severe Gastroparesis, and it really changed her life.

For my daughter, Domperidone helps a lot. sarahfh - Domperidone is easily available in the UK (we have to get it from Canada) and she doesn't have any side effects from it. Other options are Erythromycin (worked well for a while), Reglan (we were too scared of the side effects) and Cisapride (but that's hard to get in the US, not sure about other countries).

Let us know how you're doing, when you can.
 
I have a gastric pacemaker for gastroparesis. It has helped reduce vomiting from in the 20's down to 3-5 times a day, though I do still have bad days. It is worth asking about if you have lots of vomiting but it doesn't help with gastric emptying...just interrupts the vomit nerve impulses.

It is worth having the temporary pacer to see if it works before having the permanent implant. But getting funding in the nHS is VERY difficult/almost impossible.
 
Question: Allergy testing? Anyone had any luck/done it? I am in a bit of shock, but the allergy/immunology referral that my GP put in actually went through, I have an appointment tomorrow, and they have me scheduled for 1.5 hours, to include allergy testing. I have no idea what I'm in for!
 
Wildmtnhoney said:
Question: Allergy testing? Anyone had any luck/done it? I am in a bit of shock, but the allergy/immunology referral that my GP put in actually went through, I have an appointment tomorrow, and they have me scheduled for 1.5 hours, to include allergy testing. I have no idea what I'm in for!
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Wish you the best
 
Wildmtn, I have no experience with that so I have no idea. I hope it's a relatively easy test to go through. Keep us posted! And I hope it gets you some more answers!
 
Wildmtnhoney - I have had allergy testing and it wasn't bad. Mine was more focused on environmental allergies which means you pop your forearm out, get drops of allergens placed on you, and then get pricked in each spot. It can get pretty itchy but it doesn't last too long and they give you antihistamine cream when they finish. The food allergy testing I had done was just a blood draw. I hope the allergist is helpful!

Edited to add - just looked it up and some do a skin prick test for food allergies, too.
 
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Thanks all! It seems I am getting skin-prick food allergy testing, which is why it'll take so long.

In looking up food allergy symptoms, I had NO idea what some of them were!!

Redness around the eyes - I just have dry eyes and rub them too much, right? Then, itchy ear canals! I always have itchy ear canals. Like, most days, at least. But I just thought that was "normal" -- never knew it was "abnormal" for sure (ummm, most people don't get itchy there on a daily basis?). Nausea - check. Diarrhea - check. Stomach pain - double check....then some I don't think I have...but then "uterine contractions" -- I had unexplained contractions throughout ALL THREE pregnancies, to the point that I had had to have meds to control them, but was never truly "in labor" - just contracted. A lot. And I have cramps, randomly, all month. I blame the mid-month pain on ovulation, but at other times, I just get annoyed with my girly bits, since I've never had signs of fibroids or any other reason for these pains.

Tomorrow could be enlightening.

Or I could find out that all these symptoms are unrelated!! LOL
 
Blu's Tale said:
Haven't posted for a while as not much has been happening

Well tomorrow I am due for a pelvic ultrasound to check there is nothing else going on that is causing my pain and then on 5th April I have an appointment with a different hospital for a second opinion

Been doing some reading so that I can be prepared for my appointment in April and found out that a aphthoid ulcer is the earliest sign of Crohns disease so going to bring this up with the new doctor as my previous consultant brushed it off and said it was normal xxx fingers crossed I get some real answers other that it IBS
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Update: had my pelvic ultrasound today nothing showed up to account for the pain which is good so now just got to wait for my other appointment in 2 weeks with the new gastro hospital hoping they are better than my last
 
Thank you everyone for the info it's been great!
Ward round was yesterday but I've not been able to concentrate enough to read and post!
Summary is: my emptying was almost double what it should be, I'm starting erythromycin (domperidone and metoclopramide have been tried but I had dangerous side effects on both) so I have my first one tonight! Tube feeds are giving me bowel trouble (diarrhoea) but we are persevering in the hope my body just needs a bit of extra adjustment time. I'm on 50ml/hr feed for 20 hours and can eat little bits if I want to. I've had antisickness changed to ordansetron which has helped but I'm still getting some nausea, pain and reflux from just the feed and more when I do eat bits.
No long term plan yet, we are seeing how the erythromycin goes then will work on a plan! But I'm not expecting to be heading home until the weekend at the very earliest.
Because I don't vomit I don't think they will bother with the NJ but we will see!
 
Wildmtnhoney - I wouldn't have thought those were food allergy symptoms either. That would be great if it turned out that you can avoid certain foods and it would make you feel better. I'm sure food allergies are a hassle, but it's still better than feeling bad all the time and not knowing why or having a solution.
 
Sarah, thanks for the update, and I'm glad to hear that it sounds like you're making some progress. I hope the new med helps! Ondansetron is the generic version of Zofran, that's what I take for nausea and it really helps me a good deal (I honestly don't know how I'd get along without it, it's the one med that I absolutely make sure to take with me everywhere I go). It's pretty strong and can cause constipation if you overdo it, but I'm sure while you're in the hospital they're keeping an eye on how much they're giving you so as to avoid that. And if you're having diarrhea anyway, then the Ondansetron might help slow things down a little bit.

Wildmtn, I didn't know food allergies could cause those types of symptoms either! Hopefully the allergy testing will be enlightening so that you can get answers and also get relief from at least some of those symptoms.
 
Thank you everyone for the info it's been great!
Ward round was yesterday but I've not been able to concentrate enough to read and post!
Summary is: my emptying was almost double what it should be, I'm starting erythromycin (domperidone and metoclopramide have been tried but I had dangerous side effects on both) so I have my first one tonight! Tube feeds are giving me bowel trouble (diarrhoea) but we are persevering in the hope my body just needs a bit of extra adjustment time. I'm on 50ml/hr feed for 20 hours and can eat little bits if I want to. I've had antisickness changed to ordansetron which has helped but I'm still getting some nausea, pain and reflux from just the feed and more when I do eat bits.
No long term plan yet, we are seeing how the erythromycin goes then will work on a plan! But I'm not expecting to be heading home until the weekend at the very earliest.
Because I don't vomit I don't think they will bother with the NJ but we will see!
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sarahfh, my kiddo has been on Erythromycin too. It worked well for her for a while. We found that the liquid form worked much better than the pills and in the US, for Gastroparesis, primarily the liquid form is used.

My daughter also had trouble with diarrhea with tube feeds at first. We waited it out, thinking it would go away, but it didn't. Eventually we switched formulas and that worked for her. I would wait, but don't wait a whole month, like we did!

An NJ tube would help with nausea and fullness - here it's not used necessarily for vomiting. In fact, if you vomit a lot, an NJ wouldn't work because it wouldn't stay in place. I know the system is different there, but if you are very nauseous and can't deal with it on an NG, I would really push for an NJ.
 
Hey Wildmtn, I hope today went okay? You might still be doing the testing, it's just past 3 PM here so I think it's only 1 or 2 PM where you are? I hope all goes well today.

Sarah, I hope you're doing okay today too. How's the new med going?

I hope everybody else is doing okay too. I'm meh - a bunch of people at work have been coughing, so of course now I've caught a cold too. Yuck. I'm stuffy and fatigued and feeling a bit bleh. But certainly it could be a lot worse so I can't really complain. I hope you guys are all feeling as well as can be.
 
Thanks for asking Cat!

So I went in for allergy testing...stayed for a CT scan to see if I have a kidney stone :( (results pending this morning, it wasn't an ED visit)

First, the allergy testing -- I may only have tree nut allergies! That was the ONLY thing the skin prick testing showed - amazing! So, I'm on a strict, 6 week elimination of all things tree nuts, to see if it helps - she isn't super hopeful, as I don't eat tree nuts every single day, but it's worth a try. If it doesn't help symptoms in 6 weeks, I'm free to add them back to my diet.

However, the allergist didn't stop there. Going over *everything* in my chart (she was super amazing!) she decided that it was possible I may have Mast Cell Activation Syndrome, so she ordered a blood test for Tryptase (have to go back and get that drawn, the possible kidney stone interrupted things). If that comes back "off" we'll talk about what that means (and I'll be reading about MCAS on the 'net I'm sure!).

Finally, about the kidney stuff -- around midnight Wednesday I woke up thinking I was sleeping weird because my was sore on the right side. I also felt that I had to pee. When I went to the bathroom, I couldn't go. So back to bed...but 10 minutes later, the urge to pee was back, back to the toilet, and just a dribble. Back to bed, only to be woken up shortly *again* thinking I really had to go this time...rinse repeat for an hour, until I finally gave up and stayed up. Around 2am I decided that maybe if I started a lot of water, I would be able to MAKE myself go, and that if this was the beginning of a UTI, that was the best idea anyway, so that's what I started doing. Still just dribbles, with the near constant urge to go, and waves of back pain, until nearly 6am!! Finally, at that time, I went a full stream, and went back to bed, sleeping a bit restlessly until 9am (dh stayed home from work to get the kids to school for me, sweet man <3 ). When I got up, I called my GP, and begged for a same day appointment, but made it clear I didn't want to cancel my allergy appointment - lucky everything is located in the same hospital offices, so it worked out.

When I got the hospital, the first thing I did was buy cranberry juice to drink during the allergy test. After allergy appointment, went straight to the Internal Medicine offices and gave a urine sample. Amazing to me and dr, it came back perfectly normal. But when he whacked (lightly) on my back on the right side, man did it hurt! So he sent off an urgent request for a kidney CT, told me what to watch for in case it ends up being shingles instead (oh I hope not!), what to look out for in terms of infection if it is a stone, etc. Then sent me down to radiology to see if they could fit me in ASAP.

Again, things were in my favor! They have extended hours (by this time it was near 5pm) and they were able to schedule me for a "same-day" evening CT! So I hung out in the cafeteria for a bit, then went and got scanned before heading home. -- As a side-note - they make you lie on your stomach for the stone scan, and OMG the pain in my back while laying on my belly! I never expected that! -- Then told me the Dr will have my results this morning and sent me on my way home (after being at the hospital for half the day, I was thrilled to have dh finally pick me up!!).

Last night I took pain meds (that I have for my joint pain, Dr told me to use them for the back pain) and was able to sleep! But now I'm back with the urge to pee after just going again. Ugh! I really hope it's nothing.

So that's my super long update!
 
Wildmtnhoney - Oh yikes! I'm sorry you are hurting so much. Oddly enough, I have a friend who had similar symptoms and thought she had a UTI and it turned out it was her back. Pretty serious, too. It's so weird how symptoms like that can mean so many different things. Oh, I've had shingles and getting the antivirals quickly helps a lot. It hurt, but it wasn't excruciating. It sounds like your allergist was really great. How nice!
 
Wildmtnhoney said:
Thanks for asking Cat!

So I went in for allergy testing...stayed for a CT scan to see if I have a kidney stone :( (results pending this morning, it wasn't an ED visit)

First, the allergy testing -- I may only have tree nut allergies! That was the ONLY thing the skin prick testing showed - amazing! So, I'm on a strict, 6 week elimination of all things tree nuts, to see if it helps - she isn't super hopeful, as I don't eat tree nuts every single day, but it's worth a try. If it doesn't help symptoms in 6 weeks, I'm free to add them back to my diet.

However, the allergist didn't stop there. Going over *everything* in my chart (she was super amazing!) she decided that it was possible I may have Mast Cell Activation Syndrome, so she ordered a blood test for Tryptase (have to go back and get that drawn, the possible kidney stone interrupted things). If that comes back "off" we'll talk about what that means (and I'll be reading about MCAS on the 'net I'm sure!).

Finally, about the kidney stuff -- around midnight Wednesday I woke up thinking I was sleeping weird because my was sore on the right side. I also felt that I had to pee. When I went to the bathroom, I couldn't go. So back to bed...but 10 minutes later, the urge to pee was back, back to the toilet, and just a dribble. Back to bed, only to be woken up shortly *again* thinking I really had to go this time...rinse repeat for an hour, until I finally gave up and stayed up. Around 2am I decided that maybe if I started a lot of water, I would be able to MAKE myself go, and that if this was the beginning of a UTI, that was the best idea anyway, so that's what I started doing. Still just dribbles, with the near constant urge to go, and waves of back pain, until nearly 6am!! Finally, at that time, I went a full stream, and went back to bed, sleeping a bit restlessly until 9am (dh stayed home from work to get the kids to school for me, sweet man <3 ). When I got up, I called my GP, and begged for a same day appointment, but made it clear I didn't want to cancel my allergy appointment - lucky everything is located in the same hospital offices, so it worked out.

When I got the hospital, the first thing I did was buy cranberry juice to drink during the allergy test. After allergy appointment, went straight to the Internal Medicine offices and gave a urine sample. Amazing to me and dr, it came back perfectly normal. But when he whacked (lightly) on my back on the right side, man did it hurt! So he sent off an urgent request for a kidney CT, told me what to watch for in case it ends up being shingles instead (oh I hope not!), what to look out for in terms of infection if it is a stone, etc. Then sent me down to radiology to see if they could fit me in ASAP.

Again, things were in my favor! They have extended hours (by this time it was near 5pm) and they were able to schedule me for a "same-day" evening CT! So I hung out in the cafeteria for a bit, then went and got scanned before heading home. -- As a side-note - they make you lie on your stomach for the stone scan, and OMG the pain in my back while laying on my belly! I never expected that! -- Then told me the Dr will have my results this morning and sent me on my way home (after being at the hospital for half the day, I was thrilled to have dh finally pick me up!!).

Last night I took pain meds (that I have for my joint pain, Dr told me to use them for the back pain) and was able to sleep! But now I'm back with the urge to pee after just going again. Ugh! I really hope it's nothing.

So that's my super long update!
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Hope you get some relief soon.
 
Wildmtnhoney- I hope they figure out what is going on, soon. When is your followup?

I'm feeling pretty crummy at the moment - caught the flu on top of everything else. All the kids got it too. All the fevers have broken and I know I'm getting better, but I am still really tired and not feeling well. Still no appetite and losing weight from the GI issues and can only eat safe food. Having a pity party here :). I know I will feel a lot better once I get over the flu.
 
Dahlia, I'm similar - I didn't catch the flu, just a cold, but catching a cold/virus always affects my guts. It feels like, my immune system turns on to fight the cold/virus, and while it's on, it also attacks my guts because that's just what it does now. So I always get an increase in gut symptoms whenever I catch a cold. I've been crocheting all morning with my heating pad on my belly, trying to get my guts to calm down. Ugh. I hope you and your family feel better soon! And I am attending your pity party in spirit (I brought my own party hat and everything as I am an experienced pity partier myself). Hang in there!

Wildmtn, if it's not a stone, did they have an explanation as to why you're having these symptoms? Hopefully they can provide some answers at your follow-up. I know sometimes gut and bladder issues can go hand in hand - I was a bed-wetter up until about age 12, and now new research shows that it's almost always constipation that's causing childhood bed wetting. Apparently the colon is too full of stool (even if the kid is going regularly, and the kid may not realize they're constipated) and that pushes on the bladder and forces bed wetting episodes. So I guess I've had gut issues since I was a kid, if that's the case! And I have had recurrent UTIs since college, and of course presumed IBD now. I don't know for sure if my gut and bladder issues are connected, but I'd wager they are. So maybe there's a connection there for you as well. Just a thought anyway. Good luck at the follow-up, let us know what they say.
 
Do any of you have problems with your teeth? I haven't had a cavity since I was a kid and I had baby teeth. I think I take pretty good care of my teeth.....I brush, floss, and use mouthwash twice a day. I'm one of those strange people who actually enjoy flossing. But now I have a cavity! Actually cavities, I'm pretty sure. I haven't been to the dentist yet, because I have to wait for my dental insurance to get reinstated, which won't be until May, unfortunately. My cavities are along my gum line. I'm just wondering if my new teeth issues are related to everything else that's going on in my body.....or does life just really hate me?! 🤔
 
akgirl, I've got a lot of sudden cavities, and actually needing to get crowns :( but it is mostly due to the months I went with untreated Sjogren's and super dry mouth - saliva prevents cavities, so my lack of it caused a really bad "outbreak" in cavities.
 
AKgirl - I didn't get my first cavity until I was 35. I figured I just wouldn't get them as I never had before but I did. It wasn't bad but did need fixing. If you have to wait to go to the dentist, you might want to try to fight it off a bit. My hygienist once told me that when she could feel a cavity starting, she would start to use a flouride rinse like ACT. my kids dentist also had them use a strengthening calcium product called MI paste to reverse beginning cavities but I don't know if you can get it without a prescription. I think those only work if the cavity is making the enamel thin, but it's still only in the enamel. Sorry about your cavity and good luck.

Cat - Thanks for joining me in my pity party :). I'm sorry you have a cold and I hope you feel better soon.
 
Thank you everyone for the well wishes!
I'm home! :D

I was discharged with my NG tube today, I've been setting my own feed up for the last three days and I've finally got my feed changed to Vital 1.5kcal which is what I have as a supplement drink so known it agrees with me. It came as no surprise that the diarrhoea settled down within 48 hours!

I've been on the erythromycin for a few days now, I'm not really sure if it's helping or not yet if I'm perfectly honest, it is giving me reflux/nausea (very hard to describe) but all antibiotics do this to me. I suppose we will see.

There's not a long term plan yet but I know they are hoping to get me off tube feeds and eating enough orally sooner rather than later which makes me a little nervous if I'm perfectly honest. I'm worried that they will stop the tube feeds and I will just start to lose weight again. I guess time will tell!
 
Sarah - that's great that you are home safely and can do the feedings yourself. Being pushed to normal food does sound a bit nerve wracking - hopefully you can be on the feedings as long as you need to be.

I have my MRI this week. They are looking for bowel thickening. I don't know if that is from scar tissue or current inflammation, but if it is scar tissue I wouldn't expect to have that as I haven't been having weird GI symptoms for very long. I hope they aren't doing it too soon.

One thing that is nice is that they willl (I think) be able to see if there is anything weird going on with my appendix. I still don't have an appetite (7 weeks now) and it did look like a mild appendecitis at first, and appetite loss goes along with that. They will also just get a nice look at everything and maybe that will help. I think it is looking less like Crohn's as time goes on, but I still don't know what is going on and I really appreciate all the support here!
 
Dahlia said:
Sarah - that's great that you are home safely and can do the feedings yourself. Being pushed to normal food does sound a bit nerve wracking - hopefully you can be on the feedings as long as you need to be.

I have my MRI this week. They are looking for bowel thickening. I don't know if that is from scar tissue or current inflammation, but if it is scar tissue I wouldn't expect to have that as I haven't been having weird GI symptoms for very long. I hope they aren't doing it too soon.

One thing that is nice is that they willl (I think) be able to see if there is anything weird going on with my appendix. I still don't have an appetite (7 weeks now) and it did look like a mild appendecitis at first, and appetite loss goes along with that. They will also just get a nice look at everything and maybe that will help. I think it is looking less like Crohn's as time goes on, but I still don't know what is going on and I really appreciate all the support here!
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Hope you get answers soon.
 
Hey everyone, just wanted to give you guys a little update on my situation.

So I got the biopsy report back from my colonoscopy and it said all samples taken from the colon and end of the small intestine (terminal ileum, cecum, ascending colon, transverse colon, descending colon, sigmoid and rectum) were normal. I'm glad that no disease was seen microscopically, but now I'm more confused than ever. If there was crohn's in the small intestine, wouldn't they have seen it on the biopsy? I'm wondering this because I do have a follow up with my GI next Tuesday and I was considering asking about an MRE, but now I'm not totally sure she'll agree based off all the negative reports.

As for the current symptoms, I have been having some nausea and vomiting. This is pretty unusual for me, as usually I experience stomach pain and discomfort, but never actually got physically sick. I honestly don't know if this is connected to my existing stomach issues or if its just a bug that'll go away in a few days. I really hope it's the latter because I don't want to have to deal with another problem along with everything else :/
 
I had that happen to me too, kittykat. I was getting a lot of general diarrhea that wasn't a response to food (as mine normally is) and it was weird and confusing... and then I found out my husband had it too and it went away a few days later. It was a relief that it wasn't the new normal for me, just a bug :)
 
I had my MRI yesterday. The good news was that the barium drink was clear, not the nasty liquid chalk stuff. It ended up being tough in other ways, but the drink was a great surprise.

The results were negative so I think they are going to go with the post infectious IBS diagnosis, though I won't know until my appointment in a few weeks. I am going to ask about gastroparesis. I looked it up and it doesn't explain the weird bowel issues, but it would explain my lack of appetite, nausea, weight loss, and complete inability to eat anything but small portions. I'm down 19 lbs in 7.5 weeks so *something* is happening darn it. I think they are probably right that my bowel issues are IBS, not Crohn's, but all the issues eating don't seem like IBS to me.

I won't see them for a few weeks so for now I will just keep doing what I am doing, eating small meals and staying on a low residue diet. If anyone has any advice or good resources, please share them!
 
Dahlia, gastroparesis is what I have just been diagnosed with during my hospital admission. I had the gastric emptying study done a few days before as an outpatient and got my results while there. It's definitely worth bringing up with your doctor, there are a number of medications they can try to help your motility and they can prescribe things like Ensure drinks which are liquid nutrition with a load of vitamins, minerals and calories in. My dietician at the hospital recommended low fibre, low fat, little and often foods as they are easier to digest, as well as things like soup, mashed potato etc that are soft and gentle on the system. Also Maya has tons of experience with gastroparesis from her daughter so she might be able to offer more insight than I can given my newly diagnosed status!

Maya how long before your daughter noticed a difference on the erythromycin? I'm on 250mg twice a day and approaching the two week mark with no noticeable difference if I'm honest. It's a little disheartening. I'm struggling a bit with tube feeds over the last couple of days which again is disheartening, if it keeps up I think I will ask about an NJ even though I don't vomit. My follow up with my consultant isn't until June though so it might be a long road to progress!
 
Going for my follow up tomorrow morning. I'm going to try to push for a small bowel study. I just hope the GI doesn't try to convince me that it's "just IBS". The problem with me is that I tend to agree with the doctors when I'm with them and just take whatever they tell me, and then I leave the room feeling like I just wasted my time. I also don't know how I'm going to convince her that the bleeding isn't just from hemorrhoids, because that seems to be my "diagnosis" atm. I need to work on being consistent, I'm not leaving the office until I get a referral for a small bowel check.
Wish me luck everyone!
 
Hi kittykat,

Best of luck to you. Keep us posted and remember to make a list of things that you need to discuss to take with you. Don't leave until you go over the whole list with the doctor. You have to stand your ground and anticipate some of the questions that may be asked of you and have a firm response for them ready. Try to think of some things that may be asked, like why do you think you need this particular test? etc. Then think of an educated response that would justify you requiring such a test. Hope this helps.

Give me a shout on here if you need any help,

cmack
 
kittykat234 said:
Going for my follow up tomorrow morning. I'm going to try to push for a small bowel study. I just hope the GI doesn't try to convince me that it's "just IBS". The problem with me is that I tend to agree with the doctors when I'm with them and just take whatever they tell me, and then I leave the room feeling like I just wasted my time. I also don't know how I'm going to convince her that the bleeding isn't just from hemorrhoids, because that seems to be my "diagnosis" atm. I need to work on being consistent, I'm not leaving the office until I get a referral for a small bowel check.
Wish me luck everyone!
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You know your body better than anyone else. Keep pushing for answers and get the small bowel study. Sending support.
 
Maya how long before your daughter noticed a difference on the erythromycin? I'm on 250mg twice a day and approaching the two week mark with no noticeable difference if I'm honest. It's a little disheartening. I'm struggling a bit with tube feeds over the last couple of days which again is disheartening, if it keeps up I think I will ask about an NJ even though I don't vomit. My follow up with my consultant isn't until June though so it might be a long road to progress!
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She got better almost immediately with it. It helped her eat a little more (but like you, she definitely needed the tube anyway). She did also have increased reflux with it. So we only gave it once a day - before dinner, which is her big meal. Before breakfast and lunch, she had Bethanechol, which is used off-label for GP sometimes.

Are you using tablets or the liquid? We tried both and the tablets did nothing. The liquid is meant to be used for Gastroparesis.

An NJ tube made a huge difference for her. She didn't vomit a lot, but she did vomit whenever we tried to do NG tube feeds, so the NJ made a lot of sense and REALLY helped.

I would push for that, definitely.

She also did much better on Domperidone vs. Erthromycin. They allowed her to try Domperidone even though she developed an arrhythmia in the hospital, when she had Refeeding syndrome. She is just monitored VERY carefully by a cardiologist - with EKG's and echocardiograms several times a year.
 
Sending well wishes first thing to everyone!! KittyKat, sending you good thoughts this morning!!

Sorry I've been away awhile again! So my follow up was that I seem to continue to be an enigma. Joy. No kidney stone for sure (yay!). But continuing pain (boo!) with "normal" test results.

Severe enough pain, though that I found myself BACK in the ED this past weekend, on morphine this time. Test results? A cyst on my right ovary (not enough to cause the pain). Everything else was fine, except I had a ketone level of 80 in my urine, and my TCO2 was a bit low (so I might have been heading toward an acidotic state, which can also cause belly pain). Now, I hadn't eaten in over 18 hours, due to nausea from pain, but that isn't the first time I've been in the ED and haven't eaten in that long, and they always test my urine. Never before have I had more than "trace" ketones. However, this time, my blood glucose was also one of the LOWEST readings I've had, at 79mg/dL [I think that's about 4.3 or 4.4mmol/L -ish for European friends] (I'm normally in the mid 80s to low 90s when fasting). So strange! They just told me to follow up with GP. Which I'm doing today, because I slept through most of yesterday (whoops). However, I did buy ketostix at the pharmacy, because I was concerned (I have a type 1 diabetic aunt! I don't want to get caught off guard, although with low blood sugar, I have no idea what ketones would mean other than "starvation") and I have been testing myself for ketones. I drank a TON of water, and ate some simple carbs (rice), per instructions, and saw the sticks go from dark to light, and since then haven't seen more than "small" now that I'm home and trying to eat occasionally. I also grabbed a cheap glucometer, but the strips are pricy, so I'm only checking a couple times a day, 2 hours after my "big" meals. No high readings yet (knock on wood!).

On a different note -- my belly, that has been SO big for SO long, has suddenly SHRUNK! Like, overnight! And I lost weight after being given fluids at the ED!! That NEVER happens to me -- I'm on florinef, which is "salt sparing," so getting a saline drip is almost always guaranteed to make me gain 1-2 pounds in water weight for a day. But this weekend, the morning after my ED trip (yes, I'm one of those who steps on the scale every morning, I nearly do it in my sleep...wake up, pee, step on scale...) my weight was a few ounces *less* than it had been the morning before. I think I stared at the number for a few moments waiting for it to change. However, even before that, when I had gone to bed that night, I had said to dh, "look! I can see my ribs! and there is a dent before my pooch!" -- I have had 3 kids, 2 by c-section, and have a lower belly "pooch" -- but between my lower ribs and that pooch? Now when I lay flat, instead of being "puffed up" like it has been for months and months, or even just level with the pooch, that part of tummy *sinks in*! It is so weird! And when I look in the mirror? My waist is defined! All my life I have been somewhere between an hourglass or pear shape, but for a year or more now, I've just been fat. Until the past 3 days. Since Sunday, I'm still obese, but with defined curves. To top it all off, I weigh another full pound less again today than yesterday (don't worry, that's a little bitty fraction of my total body weight, I can handle it for a day).

Now, I have been *slowly* losing weight since September. Like, two-three pounds a month slow. By trying to walk more, and eating a bit less sugar (putting stevia in my coffee, drinking sparkling water instead of soda when out, etc) but not trying too hard. But to drop a pound in a day? And lose my belly like that? Oh! And I know my belly was there the day before, because I had asked dh to bring me the heating pad before we decided to head to the ED, and before I put the heating pad on, he was laying in bed next to me, and I started to cry, because my belly was taller than his with us both laying on our backs, and he hugged me, but then said (in not so smart guy way) "yeah, but I think it's getting smaller lately!" :mad: (I can laugh about that comment now at least!)

One other note -- I am doing one thing different since the 23rd (so today would be day 5) -- my old B complex vitamin had Biotin in it, but I accidentally picked up a different one, that didn't. Noticed that when I got it home, but had already opened the new one, so I decided to just try a Hair, Skin and Nails vitamin w/Biotin. Been on that since the 23rd, and it does have more biotin than my old B Complex, and a few other minerals (but not too much of them, and they are also found in my multivitamin). I did some quick research online, and a few people mentioned weight loss w/really high doses of biotin, and I'm only taking 2500mcg once a day, but that is up from 100mcg once a day. Just thought I'd throw that in this post, in case it is a factor.
 
Ugh I'm so disappointed. I just had my follow up with the GI and it went nowhere. I told her about the blood and how I don't think it's just a hemorrhoid, but she said that hemorrhoids can cause a lot of bleeding even if it's small. She also said a hemorrhoid shouldn't cause anemia, but she just told me that my slight anemia is only caused by not taking enough iron. She said from a medical standpoint, the bleeding isn't too much of a worry. She put me on more fiber and will refer me to a colorectal surgeon to remove the (very tiny!) hemorrhoid. I even asked if there was a possibility of something happening in the small intestine, but she said that she doesn't think that a pillcam is necessary after the endoscopy I did 6 months ago and the Meckel scan. I asked about an MRI as well but she said that it's not necessary.
I'm SO frustrated and nearly cried. I really don't know what to do. The only thing I can think of doing is getting the hemorrhoid removed and then seeing if the bleeding stops. If it doesn't, then we will know for sure the bleeding isn't just coming from there. This just means more waiting though. I don't know guys, I'm fed up and scared and angry and I feel like I know what tests have to be done, everyone on here knows what tests need to be done, but the GI doctor herself doesn't know. Like what do I need to do?? Do I literally need to argue with her and force her to get the small bowel study? Being persistent didn't work in my case.
 
kittykat234 said:
Ugh I'm so disappointed. I just had my follow up with the GI and it went nowhere. I told her about the blood and how I don't think it's just a hemorrhoid, but she said that hemorrhoids can cause a lot of bleeding even if it's small. She also said a hemorrhoid shouldn't cause anemia, but she just told me that my slight anemia is only caused by not taking enough iron. She said from a medical standpoint, the bleeding isn't too much of a worry. She put me on more fiber and will refer me to a colorectal surgeon to remove the (very tiny!) hemorrhoid. I even asked if there was a possibility of something happening in the small intestine, but she said that she doesn't think that a pillcam is necessary after the endoscopy I did 6 months ago and the Meckel scan. I asked about an MRI as well but she said that it's not necessary.
I'm SO frustrated and nearly cried. I really don't know what to do. The only thing I can think of doing is getting the hemorrhoid removed and then seeing if the bleeding stops. If it doesn't, then we will know for sure the bleeding isn't just coming from there. This just means more waiting though. I don't know guys, I'm fed up and scared and angry and I feel like I know what tests have to be done, everyone on here knows what tests need to be done, but the GI doctor herself doesn't know. Like what do I need to do?? Do I literally need to argue with her and force her to get the small bowel study? Being persistent didn't work in my case.
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Maybe you need a second opinion.
 
Hi kittykat,

I agree with Ron. I think you need a second opinion, but really the referral is going to be with a specialist, so that is a good thing. That visit to the surgeon is actually going to result in a second opinion. Surgery for a small hemorrhoid seems a bit much, I could be wrong. I tend to think the surgery is more dangerous than the existing problem of a small hemorrhoid. All my hemorrhoids(several) with the exception of one have been internal and healed with no surgery. It is good that you got a referral to a colorectal surgeon, I think you should go to the consult with him/her. They will be a way more helpful to you. I doubt they would operate on something like that.

Just my thoughts.

All the best, keep in touch,

cmack
 
Thank you so much Ron and cmack, both of you have been incredibly helpful and understanding. I also don't see the reason for the colorectal surgeon, but I do think that if I consult with him/her they will agree that this hemorrhoid should not have to be removed by surgical means. I mean, just why is it so difficult for my doctors to see that this could be caused by something other than a hemorrhoid and shouldn't it be their job to make sure they're covering all bases? I just don't get it, even after I told her my concerns about the bleeding and the anemia.
 
Not all doctors are created equal, that's for sure! I hope the surgeon is more of a help. Every time I had had a meeting with a surgeon they wanted some kind of imaging before they did anything. I hope you are on the right track.
 
Kittykat, for what it's worth, I saw 2 different colorectal surgeons for my bleeding internal hemorrhoids (the first one was extremely dismissive of me so my GI sent me to a different one). I didn't have surgery but I did have my hemorrhoids banded. That was extremely uncomfortable and they just came back within 3 weeks anyway, so that's not something I'd recommend. The surgeon will most likely have a look at your hemorrhoid and then let you know what your options might be - banding, suppositories, leave it alone, etc. If it's just one small hemorrhoid then they may want to opt to do nothing, but it's probably a good idea to talk with them anyway. It's possible they'll agree that your bleeding isn't from the hemorrhoid after all, and that should give you more justification to go back to your GI and ask for further testing.

My anemia did turn out to be caused by hemorrhoid bleeding, but my GI told me that that's pretty uncommon, to become anemic solely because of hemorrhoids. And since it sounds like you only have one (I had 3 that were banded) and it's small, I'm hoping that the CR surgeon does agree that it's not the cause of your anemia. It's worth a shot at least. And if that doesn't work, I agree that getting a second opinion from another doctor sounds like your best bet.

Wildmtn, I'm sorry you don't have any answers yet! I'm glad it's not a stone, but I wish they could figure you out already. Clearly something is going on! Yeah, weight loss from illness is weird, my gain and loss seems to mostly happen in my belly area too. At the worst part of my flare last year, my weight dropped down to 129, and my belly looked concave. And I've since gained a bunch of pred weight, seemingly all in my belly and face, and my belly is definitely round now - my current weight is 150 on the dot as of this morning (I also weigh myself daily, just to keep track of things). I'm curvy as well, but I don't like having a belly curve. :p Oh well.
 
Maya thank you! About 3 days in I felt like maybe it was doing something and I still get the odd day where I think it could be but then other days when I feel like there is no point me taking it because it's not helping!

I'm using tablets but I will ask about the liquid, it makes sense that the liquid would be more effective for gastroparesis to be honest.

I think the NJ would help me a lot, some days I'm struggling with my 50ml/hr and have to go right down to 35ml/hr which sucks. I will obviously persevere with my NG feeds but I will bring up the NJ when I have my next appointment.

Ahh I see that's good they let her have it and just monitor her closely. I had dodgy heart beats when I took it so they told me to stop taking it and it's basically been written off for me, they seem to be quite strict about it here.

Wildmtnhoney I really hope they can get to the bottom of everything for you soon that sounds so frustrating!

Kittykat I'm so sorry your appointment didn't go well, like others have said I would definitely recommend getting a second opinion but do see the surgeon for their opinion. They may be able to send a report to your GI with their opinion, from experience a lot of doctors will listen to their colleagues more than the patient sadly.
 
sarahfh, for what it's worth, Erythromycin can also cause heart problems (long QT syndrome). Not sure what your particular problem was, but make sure Erythromycin is also safe for you to take!

I would definitely push for an NJ tube - 35 mL/hr is pretty slow and it's got to be hard to gain weight at that rate. My daughter now does 85 mL/hr with her J tube, but when she was very underweight, we were able to go up to 100 mL/hr. There is no way we could have done that with an NG tube.

Some people with Gastroparesis can tolerate liquids, so I understand trying an NG, but if it's not working well, I hope you can get them to let you try the NJ.
 
I will definitely mention that next time I see my consultant, it's not something I was aware of!

I usually manage 50ml/hr and my feed is 1.5kcal per ml so that's not too bad for calories but because my current set up isn't exactly mobile I only manage 600-700ml feed so 900-1000 calories from feeds. I am managing to eat bits but definitely not enough to top me up for any meaningful weight gain :/ I need to speak to my dietician about getting my feed mobile so I can get more in!

I'm going to bring up the NJ at my next appointment because I think that could really help if I can't get my feed more mobile again, I don't think there is any chance of getting my rate up much higher with the NG.
 
I usually manage 50ml/hr and my feed is 1.5kcal per ml so that's not too bad for calories but because my current set up isn't exactly mobile I only manage 600-700ml feed so 900-1000 calories from feeds. I am managing to eat bits but definitely not enough to top me up for any meaningful weight gain :/ I need to speak to my dietician about getting my feed mobile so I can get more in!
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Another option might be to try a different formula and see if you feel better. 1.5 kcal per mL can be hard to tolerate. We tried that first too and my daughter got very nauseous with it. 1.0 kcal per mL was much better for her.

What kind of pump do you have? In the US, most people use the Enteralite Infinity or the Kangaroo Joey. Both can be put in backpacks and carried around. We almost never use my daughter's IV pole - the backpack is much more convenient. We have the Infinity pump and it is very light and easy to carry around. Our homecare nurse gave us a backpack and now we get them through our DME supplier (though, of course, you could adapt any backpack).
 
I tried a 1.0kcal feed in hospital and that was the one I wasn't tolerating well, the idea with this is it's what I was having as a supplement drink anyway so I know I tolerate it and by having the 1.5kcal per ml I don't need as much volume so there is less pressure to get my rate up :)

I have the Flocare Infinity pump which I think is just a purple version of your daughters? But the problem I have is my feed is a different company so I have to use a universal bottle giving set which has this reservoir/chamber on like on an IV drip which makes the whole thing too long to fit in the backpack I was supplied. There is an empty bottle you can get which fits perfectly in my backpack because it's the same company but they are reluctant to let me decant the feed from one bottle too another because it increases the chances of infection. So I'm having a bit of a stand off with them about that! The stand I use right now is huge and hard to move around with especially up the stairs to my bedroom which is more like a ladder (attic conversion) and I've fallen a couple of times because holding the stand means I can't hold the stairs. So I'm going to have to bring it up again because the current set up isn't safe and disconnecting every time I need to go downstairs to use the bathroom or get a drink or whatever seems more of an infection risk to me than transferring the feed from one sterile container to another :/
 
We use bags, not a bottle. They're disposable - we get one per day from our insurance.

This is what they look like: http://www.bettymills.com/enteral-f...tent=Medical&gclid=CIL5seub_NICFY6EswodKJ4Ctg

We do pour the formula from the cartons straight into the bags. The bag goes into the backpack - if it's hot, we stick an ice pack in there too. We do disconnect a lot and don't worry about infections. The stomach isn't sterile and the infection risk is actually not very large.

My daughter is pretty immunosuppressed - on steroids, a biologic and an immunomodulator, but we've never been told to avoid connecting and disconnecting - even when she had an NJ or NG tube. In fact, with the NG tube she inserted it every night herself.

If you look at Feeding Tube Awareness (it's a website) they might have more info about various set-ups.

I definitely agree that you need to be more mobile and not falling!! I hope you can work something out!
 
I don't think they do bags like that here, it's either plastic bottles you connect a giving set straight too or like a plastic/foil pack you connect the giving set to. There are empty plastic bottles and matching giving sets for them which are used for feeds that come as a powder or for giving extra fluids, they are what I was using in hospital and I had no problems with, plus they fit perfectly in my feed backpack. I think I will just have to keep on at them about it.

I figured it won't matter too much with the tube being an NG, that's what stomach acid is for after all. I mean if I'm home and I drop something onto the sofa for example I just pick it up and eat it and it's never caused problems. We have cats so the sofa isn't exactly a germ free surface!

I think I just need to be a little persistent and give them my valid reasons. Plus the whole point of this is to try and improve my nutrition and help me gain weight and not getting the full amount of feed isn't going to help that.

Although all my discharge papers and everything put a lot of emphasis on encouraging oral intake so as not to become dependant/reliant on the tube so part of me worries that they won't be sold on the "I'm not getting all my feed because of this" argument. We will see I guess.

At the moment I haven't got a follow up dietician appointment booked and my consultant appointment isn't until June so I may have to chase them about it all.
 
I figured it won't matter too much with the tube being an NG, that's what stomach acid is for after all. I mean if I'm home and I drop something onto the sofa for example I just pick it up and eat it and it's never caused problems. We have cats so the sofa isn't exactly a germ free surface!
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Exactly! We have cats too and one of them was a kitten when my daughter had her NJ tube. The kitten kept batting her tube and grabbing it and even tried to chew on it ;). It was NOT sanitary (and we told her to keep the kitten away from her face) but she was perfectly fine.

I hope you are able to figure something out. Keep pushing! You can buy a backpack off Etsy too, if you don't want to adapt one. I think a backpack even with the bottles should be much easier than trying to drag an IV pole around.

Another trick you can try is increasing by a couple of mL every few days. It's very slow and tedious, but it might help you tolerate more if you do it very slowly. It may not, considering you have GP, but it's worth trying.

The other thing they told us was to use Erythromycin before the tube feeds. I don't know if you're doing them all day, but we did them at night, so I would just give my daughter a dose of Erythromycin before bed. It helped a little.

Good luck!! Hope you start gaining weight soon!
 
So I had a blood test done a few days ago and my results came back today. They don't look too bad, hgb is still low at 11.2 (.1 higher than last time) ferritin 17 (slight improvement from 11), iron 90 and hematocrit lower end of normal at 35.4. These numbers aren't ideal, but I guess at least if I am bleeding it's not a lot, at least not enough to be too dangerous? I still feel like I should push for a pill cam or MRI though, just in case there is something in the small intestine, as I am still having some cramping and back pain. What do you guys think I should do? Should I maybe just monitor my iron levels for now and see how it holds up? I do have an appointment with a colorectal doctor sometime in the coming month, I really would prefer do get an MRE done but I'm afraid they won't agree with me.
 
Maya it looks like my dietician is going to try and get me the backpack from the company my feed is from as it will fit the feed bottle. It's not a great fit for the pump apparently but it will be better than nothing! So fingers crossed she can pull that off for me. Luckily it's not an IV pole, it's a plastic stand thing that's almost knee height, so I can carry it around but it's a pain.

I'm definitely going to bring up an NJ though, last night was a bad GP night (I attempted dinner, it was a mistake) and I was up until 3am feeling like I was going to puke despite the fact I had knocked my rate right down to 25ml/hr :( I didn't get anywhere near my minimum amount of feed/calories but I guess something is better than nothing.

I take my erythromycin 12 hours apart so in the morning and bedtime, I think the hope is the morning one will make me want to eat in the day and the bedtime one will help the feed go through easier!

After last night I'm feeling pretty fed up and disheartened to be honest, I had one fish finger and about two tablespoons of mash and that's how ill it made me, I don't know why I'm suddenly finding it so hard to deal with. Maybe it's because it's real now, I have the diagnosis, it's not something with a simple and straight forward fix. This is potentially my life now.

But, I'm proud of myself for not just turning my feed off last night, I'm proud of myself for still getting up this morning and going to see my Dad despite feeling so ill :)
 
I feel like all I do on here is complain, but I really need to vent! So I took LDN for about a month until I decided to take a break from it because of the side effects I was experiencing. I was having trouble sleeping, I had horrible gas, and I had bad anxiety. After stopping, the sleep trouble and the gas went away, but the anxiety has stuck around. With a vengeance. My husband did some research and he found that since LDN affects your immune system, it can end up bringing out issues that you didn't really know that you had. So we're guessing that the anxiety is some type of autoimmune response but we really don't know. I've NEVER experienced anything like it. I thought my life sucked before, but now it's unbearable. I keep having panic attacks, I guess. I've never had them before, and I'm not hyperventilating (yet), but I majorly freak out. It happens every time I leave my house. It happens when I'm at my house. It happens when I walk to my mailbox to get the mail. It happened when I was brushing my teeth. Today it happened while driving, which was so scary. I've decided that I just need to stay home, because it's starting to feel really unsafe. And it just seems to be getting worse every day. It's unlike anything I've ever experienced before, and I don't understand why it's happening. :(

Anyway, Sarah I hope you get everything with your feeding tube figured out, and I hope it works great for you. I'm proud of you for sticking with it, even though it sounds like it's been anything but easy.

Kittykat, it makes me sad that you're so young and already experiencing health issues. My problems started when I was 23 (now I'm 26), and I still feel like it's SO unfair that I'm so young and so sick. I understand what it's like to have people not believe you, and it's horrible. I hope you get answers soon.
 
Hi ak,

I agree with Ron. You need some help with this anxiety problem. You definitely should tell your doctor. Maybe this is a side effect that will go away in time? I hope so.
 
AKgirl - I'm so sorry your meds seem to be causing anxiety. I was on some meds last year that can (and most definitely did) cause depression. I think it's something I have always had to some degree, but usually it's pretty mild and things are basically ok. The meds made things very much not OK. I told my doctor and I went straight off them and we tried something else. Fortunately there was something else that could be tried. Whether you need a different med or antianxiety meds or help coping with therapy like CBT you should definitely talk to your doctor asap and get help.

Sarah - I hope the feeds get better. It sounds really tough.

Kittykat - I'm not an expert on GI stuff but I think sometimes it helps get doctors to do what you want if you also try the things they suggest. I also think you will feel better if you manage your anemia -- i would talk to your normal doctor about how to get that under control. Normally they suggest you take more iron than is just a multivitamin. If you work with your GP to get your iron levels back to normal and you work with the colorectal surgeon to get your hemmeroids controlled, then if you are anemic it should be very easy to get a stool sample tested for blood. I feel it has blood and your hemmeroids are managed, that seems like a good case to present to the GI to request more testing for ntestinal bleeding like a pill cam. I'm sorry you are struggling with this. It must be really frustrating, especially when you are so young.

I'm seeing my normal doctor this week as a followup on my iron levels. I am planning to ask her if there are other blood tests that would make sense to run to check for malnutrition. 10% weight unintended weight loss in 8 weeks. Any suggestions on tests to request? Or is that pretty standard and no need to make special requests?

I'm reading up more and I think mild gastroparesis and post infectious IBS probably is what is happening. The IBS is settling down. I can eat cooked vegetables again!! They taste so amazingly wonderful. Hopefully the appetite and eating issues will also go back to normal on their own - apparently they can if they were caused by an acute illness, as they were with me. Until then I just need to try to manage my nutrition and slow down the weight loss so it isn't too hard on my body. My GI said we can do the gastroparesis test but I think we will wait till I visit in a few weeks, as it might just start getting better on it's own as my digestion is doing.
 
akgirl said:
I feel like all I do on here is complain, but I really need to vent! So I took LDN for about a month until I decided to take a break from it because of the side effects I was experiencing. I was having trouble sleeping, I had horrible gas, and I had bad anxiety. After stopping, the sleep trouble and the gas went away, but the anxiety has stuck around. With a vengeance. My husband did some research and he found that since LDN affects your immune system, it can end up bringing out issues that you didn't really know that you had. So we're guessing that the anxiety is some type of autoimmune response but we really don't know. I've NEVER experienced anything like it. I thought my life sucked before, but now it's unbearable. I keep having panic attacks, I guess. I've never had them before, and I'm not hyperventilating (yet), but I majorly freak out. It happens every time I leave my house. It happens when I'm at my house. It happens when I walk to my mailbox to get the mail. It happened when I was brushing my teeth. Today it happened while driving, which was so scary. I've decided that I just need to stay home, because it's starting to feel really unsafe. And it just seems to be getting worse every day. It's unlike anything I've ever experienced before, and I don't understand why it's happening. :(

Anyway, Sarah I hope you get everything with your feeding tube figured out, and I hope it works great for you. I'm proud of you for sticking with it, even though it sounds like it's been anything but easy.

Kittykat, it makes me sad that you're so young and already experiencing health issues. My problems started when I was 23 (now I'm 26), and I still feel like it's SO unfair that I'm so young and so sick. I understand what it's like to have people not believe you, and it's horrible. I hope you get answers soon.
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Akgirl, I am so sorry to hear about the anxiety you are experiencing. I had no idea that LDN could cause problems (I don't know much about it, quite frankly, since I've never taken it). I do know quite a bit about anxiety, however, because I've had general anxiety disorder/agoraphobia/panic attacks since I was 16. I had attacks at the most unusual times - times that didn't even make sense. My friend passed away in a car crash 1 day before I got my learners' permit (I didn't find out until the following Sunday) and I didn't want to leave the house. I certainly didn't want to drive or go to school. I was vomiting all the time and not eating because of the vomiting so I lost a ton of weight.

I was not only diagnosed with anxiety - I had major depressive disorder and PTSD which was diagnosed by a psychiatrist and promptly started on medication and therapy. It took me YEARS to get better because I was unwilling to be an active participant in my own treatment - I would go to the appointments but I wouldn't use any of the advice or talk about what was really bothering me. It wasn't until I decided I wanted to get better that I actually did. I was well for a period of about 9 years. I am just now starting to have a relapse because of a tornado in February that caused a tree to come thru our roof and my bedroom, as we speak, is in shambles because we are waiting for a contractor to start working on it.

Anyway, what I'm telling you is: DO NOT BE AFRAID TO SEEK HELP. You don't have to live like this. It's a good thing you stopped the LDN. Some medications can affect you negatively - for me, it was hormone therapy to prevent further ovarian cysts. I can tell you that, for me, a combination of medication and cognitive behavioral therapy was the key for my recovery and I'm back in therapy again for a "tune-up" so I can get better. CBT is proven for anxiety disorder as it gives you coping skills and helps you understand situations better. You are given tools so you can lessen anxiety attacks. You may not need medication or you may only have to be on it for a short time until you get better - mine is chronic and I have to be on it for life and that's OK. The important thing is that you get the help you need to get healthy again. Hope this helps! :)
 
Thanks everyone for your responses! I know I can always count on you guys.

MissLeopard, it actually makes me feel a little better knowing that you understand! I've actually seen two different counselors in the past, but I ended up having to stop going because I was just too sick with my GI issues.....and I still am. But I wasn't having these types of anxiety issues then. I thought that LDN had virtually no side effects, but now I'm not so sure. I guess the timing could just be a coincidence. I do have a prescription for an anti-anxiety medication, so I've been taking that more often, but it's just an as needed one, so I think right now I probably need a daily medication. My poor body just has so much going on. I'm so sorry to hear about everything you've gone through and what you're going through right now. That sounds awful! Thank you so much for your response. I hope everything gets better for you!
 
akgirl:

Anxiety is terribly crippling. I am very sorry you are having such a terrible time. In the past I have taken klonopin for it, but now just take Celexa daily, which really helps. I've read that Omega-3 can also help with anxiety, so that might be something worth trying. I was thinking about your experience with LDN and anxiety and wondered if your reaction to it has something to do with it being an opiod antagonist. Since it blocks the absorption of opioids it also blocks our natural endorphins, and that can definitely result in anxiety. If that's the case hopefully that effect will be temporary. I think I remember reading you are very sensitive to drugs, so you may be experiencing a side effect that many people do not. Oh the joys of being unique! I hope you feel better soon.
 
akgirl said:
Thanks everyone for your responses! I know I can always count on you guys.

MissLeopard, it actually makes me feel a little better knowing that you understand! I've actually seen two different counselors in the past, but I ended up having to stop going because I was just too sick with my GI issues.....and I still am. But I wasn't having these types of anxiety issues then. I thought that LDN had virtually no side effects, but now I'm not so sure. I guess the timing could just be a coincidence. I do have a prescription for an anti-anxiety medication, so I've been taking that more often, but it's just an as needed one, so I think right now I probably need a daily medication. My poor body just has so much going on. I'm so sorry to hear about everything you've gone through and what you're going through right now. That sounds awful! Thank you so much for your response. I hope everything gets better for you!
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It could, very well, be poor timing, but I have found that it's better to be proactive just in case. I know, from experience, that health issues tend to bring up anxiety attacks for me, even when I think I'm doing OK. I start feeling like a hypochondriac, too, when people tell me there is nothing wrong with me. I know how I feel and, though it may not be a physical illness, mental illness affects how you feel on a daily basis. Did you know there is a branch of psychiatry known as psychosomatic medicine based on the fact that physical ailments can be caused or aggravated by a mental factor such as internal conflict or stress? Basically, it incorporates mental health with general medical issues. This might be a good idea for you since these specialty psychiatrists may know a little better how your Crohn's affects you mentally. You might be able to do a google search with "psychosomatic" and your zip code. My search in my area brought up a whole list of people who specialize in psychosomatic medicine who are also psychiatrists. :)
 
Jabee, what you said about the endorphins totally makes sense! Thank you so much for your insight! There are some smart people on this forum. :) Now if some of you could just become doctors, that'd be great..... I've always been a worrier/over thinker, but I'd never really experienced the physical symptoms of anxiety. And they're scary! I have so much more empathy for people who struggle with anxiety every day. I now understand how debilitating it can be. My husband suggested that I try to get a prescription for Klonopin. Did it work well for you? I did some research on it, and I guess it helps some people with nausea too, which is one of my most debilitating symptoms. So maybe it'd kill two birds with one stone? I got some magnesium, because I've heard it can help with anxiety. I'm guessing I'm way past the point of it helping, but I figure it's worth a shot at this point. But I know I don't want to take too much, because I already have plenty of BMs as it is!

MissLeopard, thank you! It definitely makes sense that our physical issues can cause mental/emotional issues. I can admit that I have anxiety and depression right now. But if I got better and was healthy again, I don't think I would have either. At least not to this extent!

As a side note, I saw a spider in my house last night, but I was too afraid to kill it because I have a spider phobia. And now I have no idea where it is!! Ahhhh. You'd think my cats would help out but nope. And there's still a ton of snow where I live, so why are the spiders already appearing?! Now I feel like there are spiders all over me. :) haha!
 
akgirl said:
Jabee, what you said about the endorphins totally makes sense! Thank you so much for your insight! There are some smart people on this forum. :) Now if some of you could just become doctors, that'd be great..... I've always been a worrier/over thinker, but I'd never really experienced the physical symptoms of anxiety. And they're scary! I have so much more empathy for people who struggle with anxiety every day. I now understand how debilitating it can be. My husband suggested that I try to get a prescription for Klonopin. Did it work well for you? I did some research on it, and I guess it helps some people with nausea too, which is one of my most debilitating symptoms. So maybe it'd kill two birds with one stone? I got some magnesium, because I've heard it can help with anxiety. I'm guessing I'm way past the point of it helping, but I figure it's worth a shot at this point. But I know I don't want to take too much, because I already have plenty of BMs as it is!



MissLeopard, thank you! It definitely makes sense that our physical issues can cause mental/emotional issues. I can admit that I have anxiety and depression right now. But if I got better and was healthy again, I don't think I would have either. At least not to this extent!



As a side note, I saw a spider in my house last night, but I was too afraid to kill it because I have a spider phobia. And now I have no idea where it is!! Ahhhh. You'd think my cats would help out but nope. And there's still a ton of snow where I live, so why are the spiders already appearing?! Now I feel like there are spiders all over me. :) haha!
Click to expand...



I am studying to be a pharmacist (smarter than a doctor when it comes to drugs). Doctors have more diagnostic/disease knowledge. It's four years at uni and then 1 year as an intern.
 
akgirl said:
Jabee, what you said about the endorphins totally makes sense! Thank you so much for your insight! There are some smart people on this forum. :) Now if some of you could just become doctors, that'd be great..... I've always been a worrier/over thinker, but I'd never really experienced the physical symptoms of anxiety. And they're scary! I have so much more empathy for people who struggle with anxiety every day. I now understand how debilitating it can be. My husband suggested that I try to get a prescription for Klonopin. Did it work well for you? I did some research on it, and I guess it helps some people with nausea too, which is one of my most debilitating symptoms. So maybe it'd kill two birds with one stone? I got some magnesium, because I've heard it can help with anxiety. I'm guessing I'm way past the point of it helping, but I figure it's worth a shot at this point. But I know I don't want to take too much, because I already have plenty of BMs as it is!

MissLeopard, thank you! It definitely makes sense that our physical issues can cause mental/emotional issues. I can admit that I have anxiety and depression right now. But if I got better and was healthy again, I don't think I would have either. At least not to this extent!

As a side note, I saw a spider in my house last night, but I was too afraid to kill it because I have a spider phobia. And now I have no idea where it is!! Ahhhh. You'd think my cats would help out but nope. And there's still a ton of snow where I live, so why are the spiders already appearing?! Now I feel like there are spiders all over me. :) haha!
Click to expand...

I use lorazepam (generic for Ativan) on a PRN basis for my anxiety. I used to be prescribed 1mg but I always cut them in half, so I got my doctor to prescribe the 0.5mg tablet. For me, 0.5mg usually works, but there has been a time or two, when I had to take 2 tablets. Klonopin, for me, makes me feel like a zombie. I took it when an ENT doctor prescribed it for vertigo (the lowest dose). I took it 1 time and tossed it out because I didn't like how it made me feel. It's pretty addictive, too, which bothered me. Ativan is the least addictive of the benzodiazepines. Benzos include Xanax, Valium, Klonopin, Ativan, Librium, etc. Ativan is usually used as anti-seizure medication because it has a short half-life whereas Klonopin has a longer half-life (takes longer to get out of your system). If you think you might need to take anxiety medication every day, I'd recommend talking to your doctor about an antidepressant because it's not a good idea to use the benzodiazepines every day. They have addictive qualities. Buspar is another anti-anxiety medication that doesn't cause addiction, but it takes up to 2 weeks to work - I'm hoping to ask my new psychiatrist about it when I see him for the first time next month.

Anyway, a competent psychiatrist would be the most knowledgeable about what to prescribe for your particular case. While some GPs will write prescriptions, most aren't experienced enough to deal with complex cases. My recommendation would be to see if you can find either a psychosomatic doctor or a psychiatrist who is familiar with the effects IBD can have on the body and mind. Maybe your GI could recommend someone or a support group would have a list of psych doctors? I'm not sure where you live, but Dr. Eva Szigethy practices in Pittsburg and she is a psychiatrist who practices in a GI specialty clinic.

https://www.dept-med.pitt.edu/gi/faculty_info.aspx/Szigethy6043
 
AKgirl - you may already know this, but you probably want to be careful about which kind of magnesium you take. Unabsorbed magnesium causes water to stay in your bowels and results in diarrhea. When I take magnesium oxide which isn't absorbed well, I get looser stools. When I take my chelated magnesium supplement which is easier to absorb I have no digestive side effects at all. Dose also makes a difference. If you are having trouble with the one you bought, you might want to try a different kind. I take magnesium glycinate lysinate chelate by Doctors Best via amazon.
 
akgirl:

Another excellent source of information about benzodiazepines is:

http://benzo.org.uk/manual/index.htm

When I was prescribed klonopin by my psychiatrist he also suggested I look at the information on this site and as I titrated off I used the method described by Professor Ashton. The benzodiazepines are excellent drugs for anxiety but it is important to have a healthy respect for their addictive properties. In general they work best when accompanied by some form of talk therapy. I am sure you already know all of this; I don't mean to insult your intelligence!

I think ativan would work better for nausea than klonopin, but everyone reacts differently. All benzodiazepines generally make people sleepy, but that effect wears off relatively quickly.
 
Hi ak,

I take magnesium bisglycinate tablets 100mg/day and it is very well tolerated by my system. There are many different types of magnesium supplements out there and some are very poorly tolerated, as Dahlia pointed out.

I have had ativan before and it helps anxiety very quickly, way faster than klonopin or valium. They all help, ativan works the quickest for me though (within 5-10 minutes) even faster if you take it in sublingual form. In terms of how quickly they work I would rate them #1 ativan 5-10 min #2 klonopin 15-30 min #3 valium 1-2hrs. This is my experience.

I have used ativan and klonopin on an as needed basis and have had no withdrawal symptoms. I currently take valium as it agrees with me best, I can't comment on the withdrawal symptoms as I take it fairly regularly.


Best wishes,

cmack
 
Hi haven't been on for a while as nothing really to say. I have been up and down with my health and had a fright yesterday.

I went to the loo after walking into work and all I wiped away was blood... I panicked as not been this bad before and booked an appointment with my doctor. He said that the nurse will check for piles but she couldn't find anything my doctor then said he was glad that I was getting a second opinion as you don't get blood with IBS which is what my last Consultant said I had.

I'm really nervous have my second opinion tomorrow at 9.40 I hope they don't brush me off as well x
 
Blu's Tale said:
Hi haven't been on for a while as nothing really to say. I have been up and down with my health and had a fright yesterday.

I went to the loo after walking into work and all I wiped away was blood... I panicked as not been this bad before and booked an appointment with my doctor. He said that the nurse will check for piles but she couldn't find anything my doctor then said he was glad that I was getting a second opinion as you don't get blood with IBS which is what my last Consultant said I had.

I'm really nervous have my second opinion tomorrow at 9.40 I hope they don't brush me off as well x
Click to expand...
Sending support your way.
 
Blu - that would be scary. I'm sorry that happened but, awful as it is, it's good timing. I think it's helpful to be symptomatic when you see a specialist. It seems to make it easier for them to figure out what is wrong. I hope your appointment goes well tomorrow and that your new doctor is a good one.

I just found out they went ahead and ordered the gastric emptying study and I am really happy about that. I think I just have a mild case, but the more I read about it the more it seems to fit. It will be really nice to know what is going on so I can get the right treatment. I'm ok with the post infectious IBS diagnosis, but it really doesn't explain a big chunk of symptoms, all of which would be explained by gastroparesis.

Cmack - I have taken iron bisglycinate in the past and it worked really well for me. Far better absorbed than the standard iron tablets like iron sulfate - you can tell with iron bc unabsorbed iron gives you constipation and black stools. Magnesium bisglycinate is actually what I thought i was buying with my magnesium tablets, but it's slightly different. It works so I stuck with it but I am pretty confident confident that magnesium bisglycinate would work well for me, too.
 
Blu's Tale said:
Hi haven't been on for a while as nothing really to say. I have been up and down with my health and had a fright yesterday.

I went to the loo after walking into work and all I wiped away was blood... I panicked as not been this bad before and booked an appointment with my doctor. He said that the nurse will check for piles but she couldn't find anything my doctor then said he was glad that I was getting a second opinion as you don't get blood with IBS which is what my last Consultant said I had.

I'm really nervous have my second opinion tomorrow at 9.40 I hope they don't brush me off as well x
Click to expand...



I have a little good update... my new consultant believes that I have the early onset of Crohns and has started me on Budenofolk steroids. I have to start off with 3 a day this month, then 2 next month and 1 a day on the third month then I have to go back and see the consultant again. I finally feel as though they have started treatment xx
 
Blu's Tale said:
I have a little good update... my new consultant believes that I have the early onset of Crohns and has started me on Budenofolk steroids. I have to start off with 3 a day this month, then 2 next month and 1 a day on the third month then I have to go back and see the consultant again. I finally feel as though they have started treatment xx
Click to expand...
That is great.
 
Oh wow, your new doctor sounds so much more helpful. That's great news Blu! I'm so happy for you. That must be such a relief to find someone who is ready to do something to help you get better.
 
Hello everyone!

It's been months since I was on here and so much has happened. I see some of you are still here, and I hope you're all doing as well as possible!

Since I was last here, my father passed away from cancer. It was a pretty gruesome final few months, and it caused a lot of stress (as you can imagine, I'm sure).

I was finally diagnosed, at least in part. Turns out there wasn't anything particularly complicated going on. I have a hiatus hernia, GERD, and am not super responsive to the meds. I have active inflammation because of the acid that I can't seem to beat even on high doses of PPIs (currently on 120 mg of Nexium daily which apparently is very high). I also have severe motility issues of the esophagus.

So I'm at a crossroads. The surgeon says fundoplication surgery is a 50/50 chance for me. It could make me better, but it could also make swallowing a huge problem, and as they suspect another undiagnosed issue with slow/abnormal motility in the rest of my GI tract as well they are concerned about IBS-like symptoms from the surgery. He also claims that I can't really live like I am for much longer, since the inflammation won't go away and the risk of Barrett's and cancer is too high. Still, it's a choice to be made and one that I'm grappling with.

Currently trying to lose weight (and keep it off) as well as stay on a very bland diet for the following 3 months before my follow up. If weightloss and dietary changes doesn't help, surgery might be the only option even with the risks.

Also struggling with recurring anemia, no one really knows why. I have infusions regularly which does help with my energy.

Trying to maintain some kind of life while all this is going on is tough. I've had to take another break from school and am only working about 20%, if that. I'm trying to get my driver's license currently as it would make getting around much easier.

Like I said, hope you all are well, I'm going to stick around here for a bit.
 
Izzie said:
Hello everyone!

It's been months since I was on here and so much has happened. I see some of you are still here, and I hope you're all doing as well as possible!

Since I was last here, my father passed away from cancer. It was a pretty gruesome final few months, and it caused a lot of stress (as you can imagine, I'm sure).

I was finally diagnosed, at least in part. Turns out there wasn't anything particularly complicated going on. I have a hiatus hernia, GERD, and am not super responsive to the meds. I have active inflammation because of the acid that I can't seem to beat even on high doses of PPIs (currently on 120 mg of Nexium daily which apparently is very high). I also have severe motility issues of the esophagus.

So I'm at a crossroads. The surgeon says fundoplication surgery is a 50/50 chance for me. It could make me better, but it could also make swallowing a huge problem, and as they suspect another undiagnosed issue with slow/abnormal motility in the rest of my GI tract as well they are concerned about IBS-like symptoms from the surgery. He also claims that I can't really live like I am for much longer, since the inflammation won't go away and the risk of Barrett's and cancer is too high. Still, it's a choice to be made and one that I'm grappling with.

Currently trying to lose weight (and keep it off) as well as stay on a very bland diet for the following 3 months before my follow up. If weightloss and dietary changes doesn't help, surgery might be the only option even with the risks.

Also struggling with recurring anemia, no one really knows why. I have infusions regularly which does help with my energy.

Trying to maintain some kind of life while all this is going on is tough. I've had to take another break from school and am only working about 20%, if that. I'm trying to get my driver's license currently as it would make getting around much easier.

Like I said, hope you all are well, I'm going to stick around here for a bit.
Click to expand...
I am sorry about your father. I hope they get your health reasons taken care of soon.
 
Hi Izzie:

I am sorry to hear about your father. That sounds very difficult.

I am wondering when you last had an endoscopy. Excess stomach acid can cause severe inflammation in the duodenum, and that is where iron is absorbed. Since you are not very responsive to PPIs it's possible that the inflammation not only extends upward into your esophagus but also downward into your duodenum. How many different PPIs have you tried? And have you tried carafate or sucralfate? It is used for peptic ulcers but it might help. I've had Barrett's but with a different PPI (I take dexilant now) it has gotten much better and my esophagus looked better at my last scope.
 
Izzie - I am very sorry about your father. It's never easy losing someone so close to you. My condolences to you and your family and I hope you get an answer on your health issues.

I had an appointment with my PCP today, some good news. She was very understanding about my concerns and agreed that my issues should be looked into further, so she ordered an abdominal MRI to check for things like masses or tumors in the small intestine. In the meantime, she will talk to my GI about getting me a small bowel study. I'm so relieved, obviously this is just the first step in figuring out what's going on but at least we're on the right track. I'm so glad I decided to take an appointment with her instead of waiting for the colorectal doctor (who hasn't even called to set up an appointment with me yet)
 
kittykat234 said:
Izzie - I am very sorry about your father. It's never easy losing someone so close to you. My condolences to you and your family and I hope you get an answer on your health issues.

I had an appointment with my PCP today, some good news. She was very understanding about my concerns and agreed that my issues should be looked into further, so she ordered an abdominal MRI to check for things like masses or tumors in the small intestine. In the meantime, she will talk to my GI about getting me a small bowel study. I'm so relieved, obviously this is just the first step in figuring out what's going on but at least we're on the right track. I'm so glad I decided to take an appointment with her instead of waiting for the colorectal doctor (who hasn't even called to set up an appointment with me yet)
Click to expand...
I am happy for you.
 
Jabee said:
Hi Izzie:

I am sorry to hear about your father. That sounds very difficult.

I am wondering when you last had an endoscopy. Excess stomach acid can cause severe inflammation in the duodenum, and that is where iron is absorbed. Since you are not very responsive to PPIs it's possible that the inflammation not only extends upward into your esophagus but also downward into your duodenum. How many different PPIs have you tried? And have you tried carafate or sucralfate? It is used for peptic ulcers but it might help. I've had Barrett's but with a different PPI (I take dexilant now) it has gotten much better and my esophagus looked better at my last scope.
Click to expand...

Had my most recent scope in December, not sure how far down they looked though, might have to check my chart for that info. I've tried Prilosec, Pantoloc and Nexium so far. Prilosec wasn't very effective at all, Pantoloc and Nexium are about equally effective, but Pantoloc gives me the WORST dry mouth.

My iron levels did go up just a tad when I increased my PPI dose, so I do believe that the reflux and anemia are connected somehow.

I have a great doctor who specializes in these kinds of issues, but he's a bit blasé which does bother me. I don't ever really have the time to ask him many questions. I can tell he's very competent and he takes my symptoms seriously, but he's very rushed every time I see him, which is for barely 10 minute appointments where I try to ask questions that he half-answers while he's trying to leave :p

Have not tried carafate and haven't been offered it either.

I have found that I have chronic constipation which makes the reflux issues worse.

Thanks for your input, I thought I'd tried every PPI at this point, but I've never tried Dexilant.
 
Just got the gastric emptying study back and it was negative. I'm baffled (and frustrated), honestly, as when I read about it, it matched my symptoms very well and the dietary and behavior modifications suggested for gastroparesis helped. With them I have been able to increase my calories by about 50% and so weight loss should be slowed to a pound a week. I still can't eat normally, but I can eat and if I eat many small meals and some liquid meals I can get a fair amount of calories. I'm still allowed to lose 18 lbs (per normal doc) and I guess if it doesn't get better by then I do more liquids or something.

I think they are just going to call all of the weirdness post infectious IBS and we hope it slowly gets better over time as there is nothing they can do to help. I know I should be happy as they think things will just get better and I probably will be happy after a while, but right now I am frustrated because I feel like they are saying I am fine, and I am not fine. The last few months have been really really hard.

Thank you guys for all your support while going through this. It has been a big help.
 

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