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Oh, Dahlia, I know how awful that can feel! I hope you are able to take some good care of yourself today. Just because the "tests" don't show anything wrong, doesn't mean you are well, as most of us know! Be kind to yourself, and know that the doctors recognize your symptoms as being abnormal, or they wouldn't run the tests.
 
Dahlia - I'm so sorry about what you're going through, I myself had a bunch of tests done and everything looks "normal", yet I have pretty much every gut symptom you could possibly imagine.

So I got my MRI done on Monday. Went well, they told me my results should be online in 2-3 days. I just checked my results this morning, and-surprise surprise-everything looks normal! I'm relieved again, but at the same time, I STILL don't have an explanation for my symptoms! I guess this is just another test that they are going to use to convince me nothing is wrong. I guess we're back to stage 1. :/
 
kittykat234 said:
Dahlia - I'm so sorry about what you're going through, I myself had a bunch of tests done and everything looks "normal", yet I have pretty much every gut symptom you could possibly imagine.

So I got my MRI done on Monday. Went well, they told me my results should be online in 2-3 days. I just checked my results this morning, and-surprise surprise-everything looks normal! I'm relieved again, but at the same time, I STILL don't have an explanation for my symptoms! I guess this is just another test that they are going to use to convince me nothing is wrong. I guess we're back to stage 1. :/
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I am sorry .
 
KittyKat it's sooo hard to know somethings wrong, but not be able to put a name to it!! I hope you, too, are able to be extra nice to yourself today!
 
Hi kittykat,

I'm sorry to hear the test wasn't helpful. I'm here if you need to vent. I know how you feel. All of my tests appeared normal too. Somehow I got very sick and needed ton's of surgery though so obviously the doctors missed something. Just because a test says you are fine doesn't make it so. I hope you get some answers soon.


I wish you peace and good health,

cmack
 
cmack- Thank you for your support. I'm sorry you had to go through all that. That's so crazy, how something so bad that it required surgery was missed on so many tests! Medical mysteries are the worst, you feel something is wrong, you have all these symptoms that can't be explained, and you just feel terrible. My parents always ask me if I just want to be sick and why I can't accept that nothing is wrong with me. But it's just not easy to accept that when you know something is going on. Constantly feeling off is not normal, and I have told both my doctors and my parents this so many times. If I had some stomach issues, I would put it down to IBS. But my symptoms - especially the blood - does not match up to just IBS. I'm just in a frustrating position right now because my school is ending in a little over a month and I have so much catch up work to do, but at the same time it's so difficult to manage with all the pain. I already had to drop two classes. I'm just hoping I can make it through the rest of the semester with passing grades.
Sorry for the little rant, but I'm glad that there are people out there who have dealt with similar issues. It's reassuring to know I'm not alone in this.
 
ronroush - thank you

So I forgot to mention that the MRI I had wasn't specifically for the small intestine, it was for the entire abdomen and pelvis. I'm not totally sure what this checks, so does anyone know if an MRI is as good as picking up small bowel diseases as an MRE? My PCP hadn't ordered an MRE, and I'm pretty sure my doctors office doesn't offer them.
 
kittykat234 said:
ronroush - thank you



So I forgot to mention that the MRI I had wasn't specifically for the small intestine, it was for the entire abdomen and pelvis. I'm not totally sure what this checks, so does anyone know if an MRI is as good as picking up small bowel diseases as an MRE? My PCP hadn't ordered an MRE, and I'm pretty sure my doctors office doesn't offer them.
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Yes MRE are used for small intestine
It's one of the better tests GI's use for monitoring or diagnosing the small intestine
 
Mindyfang, while I am sorry you feel people are being manipulated, I see nothing wrong with what they have suggested for KittyKat. While I am no longer active on this forum due to not being undiagnosed anymore, I still very much understand how frustrating it is to be having symptoms no doctor seems to care about. I have chronic upper abdominal pain, which is what started my search for a diagnosis. They focused on my intestines for years, thinking it was crohns. Getting tests scheduled was like pulling teeth. I am now diagnosed with Behcets disease, an autoimmune disease of the blood vessels, but the chronic abdominal pain is still there and I still have no idea why it is there. My insurance refused to cover my pain meds for this pain back in January, and I've been trying to find a replacement since. It has been a nightmare. The past three weeks I've been dealing with level 8/9 pain in my abdomen all day. I ran out of good breakthrough meds over a week ago. Last night I spent most of the night googling pancreatitis, because it has been brought to my attention that I could have had chronic pancreatitis this entire time. And I will be begging for tests at my next doctor appointments due to this. MRI (never had one), Blood tests, etc. Its also been thrown around that it might be the aorta in my abdomen, but they keep putting off the angiogram to confirm. I will be pushing for that as well. When you are in agony and being brushed off by doctors, it can be absolutely heartbreaking. Just because we don't fit in a box, doesn't mean we are perfectly healthy and should be ignored.

KittyKat, I'm sorry for all that you are going through right now. You are not alone and I am glad that you were able to find this forum to be able to rant and talk to others in the same situation.
 
allieinwonder,
So good to hear from you. I am so sorry to hear that you are struggling right now though. Keep advocating for the help you need.
 
Mindyfang is obviously a troll calling other's trolls. Her/His only posts showing up are posts making fun of the same two members over and over. I'm sorry they decided to do that.

Mindyfang, Telling me to get a life after I tell you my current situation is really low. I hope you find a better use of your time in the future.

Everyone else, have a great night!

Allie
 
Wow, a troll crawled out from under their bridge and came to visit. I think I liked it better before.

Cmack and ronrush (and lots of others, but they were picked on) thank you for your support. you have always been very encouraging and supportive. I've never seen you talk someone into being worried, I've only seen you two be supportive of what people are saying and telling them you believe them and back them up. That's a kind thing to do.

Kittykat - I'm sorry you are having a difficult time right now, too. I don't know what you should do about your GI symptoms, but I hope that your normal doc can help you get your anemia under control. It won't solve your other issues, but it should make you feel a bit better as feeling tired and run down on top of everything else just makes everything worse. My ferritin is finally getting back to normal bc of the IUD and I am starting to feel a bit more energetic and it is really really nice.

I'm getting used to the idea that my body just went weird after an infection. Really weird. I didn't know bodies did that, kind of weird. I think it is slowly improving. The crazy digestion is a lot better, it's mostly my appetite and eating related issues. I still feel like my symptoms match gastroparesis, but only mild gastroparesis and I would just control it with dietary changes at this point so I guess it doesn't matter if I have a diagnosis. I think we are all done with tests, unless something changes, and the thought is that it should slowly go back to normal though it may take months or years. I see my GI in a couple of weeks but that is what I am expecting based on earlier talks. Just focus on how to manage it and stay nourished and as healthy as I can, and be thankful that it is expected to end at some point.
 
Allie - I'm sorry to hear you are having such a hard time. Running out of breakthrough meds must be really tough. My abdominal pain isn't that bad, but I have been having bad back pain for about 5 years and the pain can be really difficult and debilitating. I hope you have a good doctor and they can get the right meds and the right tests for you soon.
 
I perma-banned & deleted the troll. :) Thanks guys. Please don't hesitate to report posts like that in the future - it's the little triangle with a red outline in the lower left.
 
ronroush7, cmack and allieinwonder,
I just wanted you to know that I didn't ignore that you were being targeted by mindyfang. I reported each nasty post that I saw rather than engaging with them.
Please know that all three of you have my support and that what that person said is not true. All three of you have provided a great deal of support to many people for a long time on the forum. Please do not let that person occupy one more moment of your time, energy, or thoughts. :ghug:
 
Cat-a-Tonic said:
I perma-banned & deleted the troll. :) Thanks guys. Please don't hesitate to report posts like that in the future - it's the little triangle with a red outline in the lower left.
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Thanks for the perma-ban! I temporarily banned them but felt I shouldn't permanently ban them since I'm not on here often. When the troll reported posts I got emailed, which is why I replied.
 
Okay, so I really am at my wit's ends right now. I couldn't sleep at all last night because of really bad stomach pain and I've been having really dark, almost black stools for the past two weeks or so. The pain actually gets worse after I use the bathroom.
I'm thinking at this point, I really do need to get a scan of just the small bowel, I think it could provide at least some relief that nothing too terrible is going on if negative. The only problem is that I don't think my doctor's office does CTE or MRE. I think if the pain ends up getting unbearable, I might just tell my parents to take me to the ER. Do you think they'll be willing to do an MRE if I tell them my symptoms? I don't want to go there just for them to tell me to take painkillers or see my doc, because I really don't know how long I can wait.

Sorry if I seem like I'm overreacting or asking a lot of questions, as I have done a lot of testing and nothing wrong has been found, but these symptoms are really scaring me and I tend to go into slight panic mode when I'm dealing with a lot of things at once. :cry:
 
Hi kittykat,

I'm not sure what to do next. Black stools can be from oral iron supplements that are poorly absorbed. It can also occur from bleeding higher up in the intestines or the stomach.
The ER is better than nothing. Somebody may figure out the trouble, it could be an option since you aren't getting proper support in my opinion.

Keep in touch,

cmack
 
Kittykat - do you see the colorectal doctor soon? I wonder if you go in there saying you have abdominal pain bad enough to keep you awake at night and black stools often (and for the last 2 weeks straight) that your GI says must be from your hemmeroid, if they could help. They might be able to do whatever tests needed to see what it is from and if they think it *cannot* be your hemmeroid, they might send you to a different GI or maybe if it was the same GI, your GI would view it differently if hemmeroids were ruled out.

If you think it would help, you could ask your normal doctor about a stool sample to confirm it is blood and blood tests (ferretin?) to get an idea of how much blood you are losing. If it is a big drop, that might spur them to do something. Oh, if supplements aren't working you can ask about seeing a hematologist for IV iron, but unless your levels make them want to send you now, they may want you to try a higher dose of supplements first. It doesn't hurt to ask, though, if you would prefer that. For supplements, I like the Zahler iron complex. It's an easy form to absorb and has other vitamins in it that help iron absorption. On amazon for 10 bucks for 100 capsules.

I don't know if the ER would help. I'm not sure if they do more than normal MRIs and CT scans there... not an expert on that. I hope you feel better soon.
 
We have not gotten a call from the colorectal doctor. It has been over three weeks since we got the referral and still nothing. And I have gone to my PCP and she agreed that we should look into the bleeding further, but the only thing they can do is the capsule endoscopy. However, she said that the capsule sometimes can't detect things like tumors or masses outside the bowel wall, which is what I'm mostly worried about. That's why I'd rather do an MRE or CTE first, to make sure there's no mass or narrowing. But my doctor doesn't do those, and my parents won't take me to the ER. The hospital closest to us does do enterographies of the small bowel, but I don't know if they would do it unless I have a doctor's referral.

I did get a recent CBC and my numbers are still on the low range but not dangerously low. Hemoglobin still in the 11 range, ferretin 15, iron 90, hematocrit 34.5. My PCP did also order ANCA screen to check for IBD and autoimmune disease. I have yet to get my results from that, but I'm crossing my fingers that it's positive.

So, in summary, my main worry is bleeding and stomach pain that won't seem to go away. I'm a bit stuck because the test that I really want them to do isn't available and I feel like I won't be reassured that nothing's wrong unless I get that test. And just wondering, is there anyone on here who has had symptoms similar to mine, like with the dark bleeding and abdominal pain? My main focus right now is to just make sure there isn't anything terrible going on. :/
 
You can call the colorectal surgeon yourself at this point - sometimes specialists offices are good about calling and some aren't. In general if it's been a week since the referral, I feel totally fine calling to make my appointment.

It sounds like your ferritin is stable compared to the numbers you gave before. It seems (I think, esp as you take a multi for iron) that would mean any bleeding you have is slow. I hope that is a little bit reassuring, If not ignore it.

All the things I have been told and read say you want ferritin above 50 for women. It really makes you feel tired and cruddy and just makes everything in life more difficult, and harder to deal with. It absolutely will not solve your GI issues, and I really hope you get those solved soon and wish I could help you with it, but it's fixable and it's worth the effort to fix it.

Fwiw - I do get black stools but I think for me i think it is from iron in pills, even just my multi. I had some recently and I wasn't taking any iron except in my multivitamin.
 
kittykat234 said:
Okay, so I really am at my wit's ends right now. I couldn't sleep at all last night because of really bad stomach pain and I've been having really dark, almost black stools for the past two weeks or so. The pain actually gets worse after I use the bathroom.

I'm thinking at this point, I really do need to get a scan of just the small bowel, I think it could provide at least some relief that nothing too terrible is going on if negative. The only problem is that I don't think my doctor's office does CTE or MRE. I think if the pain ends up getting unbearable, I might just tell my parents to take me to the ER. Do you think they'll be willing to do an MRE if I tell them my symptoms? I don't want to go there just for them to tell me to take painkillers or see my doc, because I really don't know how long I can wait.



Sorry if I seem like I'm overreacting or asking a lot of questions, as I have done a lot of testing and nothing wrong has been found, but these symptoms are really scaring me and I tend to go into slight panic mode when I'm dealing with a lot of things at once. :cry:
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Didn't they do a MRE of your pelvis and abdomen? That covers the small intestine
 
Oh god I'm in so much pain right now. My parents are at some concert and they're not answering their phone, my doctors aren't replying to my messages and I really don't know what to do. I'm having awful pain in the middle of my stomach and in my left ribcage. I'm alone at home and I really don't know what to do. I'm in near tears.

I believe my mom had called the colorectal doctor and they said they would get back to us but they never did.
 
kittykat234 - Typically a GI would order an MRE. Your pediatrician or GP may not be able to.

The black stools are concerning - our GI says to call her ASAP if my daughter has black stools. Are they very dark or are they actually black? Do they look like tar?

Your GI's practice probably has a doctor on-call, especially if you are seeing a pediatric GI. Ask your parents to call the doctor on-call - black, tarry stools need to be treated urgently. Black stools typically mean bleeding in the upper GI tract.

You could also go to the ER, especially if you have bad abdominal pain. The ER can do a CT but they probably wouldn't do an MRE - they'd refer you to a GI for an MRE.

I know it's really, really hard when no one is listening to you, but try to stay as calm as you can. Unfortunately, people tend not to take you seriously if you're anxious :yrolleyes:.

Remind me - you have had negative scopes scopes and a negative MRI, right? I wonder if a pillcam may be a better test than an MRE. A pillcam would actually show the mucosa of your small bowel, so small ulcers that are bleeding could be seen. They may or may not show on an MRE.

An MRE is good for showing small bowel inflammation and strictures and thickening. But it doesn't show the surface of the small bowel - you would either need a pillcam or a longer scope (an enteroscopy) to do that.

You are your own best advocate - tell your parents you are in a lot of pain and have black stools. That should be enough for them to call your GI.
 
I'm going to try to find a nurse hotline, that seems to be the only option. I'm going to try to get my parents to take me to the ER either tonight or tomorrow morning. I'll let you all know how it goes. Thanks for your help.
 
kittykat, I didn't see your most recent message. If the pain is really bad, I would go to the ER. Is there someone else you can call? A friend's parent? A neighbor? Other family?

Otherwise, you can call an ambulance.

Really sorry to hear you are in so much pain. Keep calling your parents.

It is also definitely ok for you to call the GI-on call. They are used to hearing from older teenagers - I have had my daughters call before.
 
Maya142 said:
kittykat234 - Typically a GI would order an MRE. Your pediatrician or GP may not be able to.

The black stools are concerning - our GI says to call her ASAP if my daughter has black stools. Are they very dark or are they actually black? Do they look like tar?

Your GI's practice probably has a doctor on-call, especially if you are seeing a pediatric GI. Ask your parents to call the doctor on-call - black, tarry stools need to be treated urgently. Black stools typically mean bleeding in the upper GI tract.

You could also go to the ER, especially if you have bad abdominal pain. The ER can do a CT but they probably wouldn't do an MRE - they'd refer you to a GI for an MRE.

I know it's really, really hard when no one is listening to you, but try to stay as calm as you can. Unfortunately, people tend not to take you seriously if you're anxious :yrolleyes:.

Remind me - you have had negative scopes scopes and a negative MRI, right? I wonder if a pillcam may be a better test than an MRE. A pillcam would actually show the mucosa of your small bowel, so small ulcers that are bleeding could be seen. They may or may not show on an MRE.

An MRE is good for showing small bowel inflammation and strictures and thickening. But it doesn't show the surface of the small bowel - you would either need a pillcam or a longer scope (an enteroscopy) to do that.

You are your own best advocate - tell your parents you are in a lot of pain and have black stools. That should be enough for them to call your GI.
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I would see my GI but she's only available on Tuesdays and is usually booked. The closest appointment I would get is probably in a few weeks. That's why I want to go to the ER, because they might be able to get me an appointment with a GI earlier.

I have told my parents about the pain and the black stools, and they messaged my GI a few days ago, who replied asking if I have photos of the dark stools. I replied saying that I can take photos but the only way for her to see them is if I come in for an appointment and requested an earlier one. She hasn't responded yet.

Yes, all scopes and the MRI was negative.
 
cmack said:
Hi kittykat,

I repeat!

Do whatever you have to do. This sounds pretty serious. I wish you the best.
If you think you need an ambulance call one.


Your bud,

cmack
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Oh, sorry! I didn't see your recent message, I'm kind of in a hassle right now. Yes, I will do that, thank you. I'll let you all know how everything goes.
 
I hope you are OK, kittykat.

One nice thing about nurse hotlines is that they will tell you things like call an ambulance and then your parents can't be annoyed, because you were doing what the nurse said to do. The nurses are pretty good at figuring out if you need to go to the ER or if it can wait till Monday. thats a big part of the job of those hotlines. My medical system has one as well as my insurance and they do a good job telling you how urgent it is. Not useful, really, for general medical help and information though :)
 
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kittykat234 said:
Okay, so I really am at my wit's ends right now. I couldn't sleep at all last night because of really bad stomach pain and I've been having really dark, almost black stools for the past two weeks or so. The pain actually gets worse after I use the bathroom.
I'm thinking at this point, I really do need to get a scan of just the small bowel, I think it could provide at least some relief that nothing too terrible is going on if negative. The only problem is that I don't think my doctor's office does CTE or MRE. I think if the pain ends up getting unbearable, I might just tell my parents to take me to the ER. Do you think they'll be willing to do an MRE if I tell them my symptoms? I don't want to go there just for them to tell me to take painkillers or see my doc, because I really don't know how long I can wait.

Sorry if I seem like I'm overreacting or asking a lot of questions, as I have done a lot of testing and nothing wrong has been found, but these symptoms are really scaring me and I tend to go into slight panic mode when I'm dealing with a lot of things at once. :cry:
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I'm sorry to hear you are in so much pain. When I had my CTE done, it wasn't done at my doctor's office but an imaging center off-site. The center was affiliated with the group that my doctor was in, though. You would probably need a referral to a diagnostic imaging center.
 
I'm a bit confused by the people coming in here just to criticize.

I've found this forum to be really helpful when trying to figure out what is wrong and to get support. Sometimes when things go wrong, it is really clear to the doctors what is wrong and how to help. Sometimes it isn't. Sometimes they don't know how to help you or why things aren't working. Sometimes they don't even believe you. I'm sure it's really awful to have Crohn's or any other difficult disease, but honestly after years of pain and difficulties, the stress of not understanding what is wrong can get bad enough that you don't even care what it is, as long as someone can tell you what is wrong.

I have been lucky enough that the uncertainty hasn't been too bad for my GI issues, for me the long frustrating undiagnosed path was my back (and yes, they missed something in spite of many exams that absolutely should have caught it). For my GI issues, I have a likely diagnosis now of post-infectious IBS and that's OK. I wish something could be done but it isn't the low FODMAP sort of IBS so we just hope it keeps improving, and it is really great that getting better is the expected outcome.

IBS is real, but it is also a diagnosis of exclusion. Someone could be diagnosed with IBS because the tests are negative and then several years down the line get an IBD diagnosis. Did they have IBS and then it suddenly changed to IBD? Or did they have IBD the whole time and it just wasn't caught early on? The latter seems more likely.

For people who have symptoms that don't fit normal IBS, it can be hard to accept as a diagnosis because it doesn't seem to explain everything. I don't think it's bad to read about something like IBS and question your doctor about the parts that don't fit, and to wonder if another test could help explain what is going on.

Of course it is good to just deal with what you have, named or not, as well as you can and live your life to its fullest. That said, talking about it and getting support during the confusion and uncertainty is also part of dealing with it. If that's not helpful to you, that's fine. No need for you to do it... but there is also no reason to begrudge the support to someone else who finds it helpful.
 
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Very well said Dahila. I have a diagnosis of IBS which I am fine with, but both my GI and I think it is Crohn's. Don't know when it will be actually diagnosed - all endoscopy tests have been normal. Blood tests are not. At the moment I am on Humira and methotrexate anyway. It would influence future treatment decisions for my arthritis though (psoriatic).
 
Quick update -- I think I may really be allergic to tree nuts! I have had *way* less D since going off tree nuts for the past month, than I had before. Which is so exciting! Interesting side note, Cat, I'm also off coconut and it's oil, which isn't a "true" tree nut, but can have cross reactions or it's own reaction in some people (I guess?) and I immediately thought of you, because I never knew gut reactions "alone" could be allergies! On the down side -- man is there coconut oil in *everything* (like nearly all ice cream :( ) and when there isn't, there seems to be almond flour, or coloring from walnuts (have to watch dark beers!) or oak leaves in mixed salads (know from a friend w/anaphylactic tree nut allergies that they can cause issues)...but after a month it's getting easier to pick foods, even processed ones.

Wishing everyone health!!
 
Hello everyone :) I'm new here.. I do not know how to navigate this forum yet so I apologize if I mess it up! Lol anyway I recently had my first appt with a GI doctor. I explained some symptoms I have had for a long time now. I even had an abscess at the time for them to evaluate(I have had several over the years). I've had very bad bouts of watery D for weeks on end followed by constipation. Only when I started dedicating in my sleep and throughout the day and during routine exams had 3 doctors tell me to see a GI is when I finally went. I've had several mouth ulcers which my rheumatologist thought was attributed to an autoimmune disease. My white blood cell count has always been elevated. The GI Dr I saw refused to look at the abscess telling me it was a subeceous cyst or a cyst on my lady parts from having sex( I'm not sexually active). She gave me meds for heartburn which I don't get. And threw some other meds at me and said I have IBS. Ordered a colonoscopy and endoscopy. Never took a stool sample or did any boodwork. Is this normal? I'm very reluctant to do these tests without some proof they are necessary at this point. Can someone tell me what the initial appointment is supposed to be like because I do not believe this went normally at all. Thanks!
Manda
 
Hello everyone :) I'm new here.. I do not know how to navigate this forum yet so I apologize if I mess it up! Lol anyway I recently had my first appt with a GI doctor. I explained some symptoms I have had for a long time now. I even had an abscess at the time for them to evaluate(I have had several over the years). I've had very bad bouts of watery D for weeks on end followed by constipation. Only when I started defacating in my sleep and throughout the day and during routine exams had 3 doctors tell me to see a GI is when I finally went. I've had several mouth ulcers which my rheumatologist thought was attributed to an autoimmune disease. My white blood cell count has always been elevated. The GI Dr I saw refused to look at the abscess telling me it was a subeceous cyst or a cyst on my lady parts from having sex( I'm not sexually active). She gave me meds for heartburn which I don't get. And threw some other meds at me and said I have IBS. Ordered a colonoscopy and endoscopy. Never took a stool sample or did any boodwork. Is this normal? I'm very reluctant to do these tests without some proof they are necessary at this point. Can someone tell me what the initial appointment is supposed to be like because I do not believe this went normally at all. Thanks!
Manda
 
Welcome Mandalynn,

That doesn't sound right to me either. I would try to get a second opinion. A stool sample and blood workup should be done for sure. I'm sorry to hear that the doctor is being dismissive. Come here as often as you like.


All the best,

cmack
 
When I first saw a GI they ordered a colonoscopy first without other tests so I guess it doesn't seem too weird to me, but that's just me :) They ordered different tests the next time I went, including stool samples. They didn't order any blood work but my normal doctor had ordered some blood tests before and after.

I think the tests your doctor ordered could be helpful. Both the colonoscopy and the endoscopy could find a problem like Crohn's (or something else) or be used to rule out problems (colon cancer among others). I don't think they are bad tests to do, and when you get the results and see a GI again, you can ask about other tests like blood tests and stool samples. If you don't feel comfortable with your GI, can you have your followup with a different GI?

I don't know about the abscess but maybe you could see your primary care doctor and find out what kind of specialist you should see. Maybe it would be a colorectal surgeon instead of a GI?

I'm sorry to hear your first visit was so frustrating. I hope that either the next visit goes better or you find a GI that you are more comfortable with. Your symptoms sound really unpleasant, I hope you get some help soon!
 
Dahlia I'm sorry you've had more tests come back clear, I understand how frustrating that can be! Gastric emptying studies can be so tricky to get an accurate result from with mild gastroparesis from what I've read, the results can vary during your monthly cycle for instance. A bit of a roundabout way of doing things but have you spoken to a dietician at all? I understand it's different here in the UK but for me my dietician was invaluable in getting me the gastric emptying study in the first place and getting the gastro consultant to really listen. She also prescribed my supplement drinks to slow my weight loss too and I hope it doesn't sound dramatic but I honestly think my dietician saved my life. Have you been tried with any prokinetic drugs like Reglan at all? It might be worth a small trial. My GP gave me a trial of domperidone which helped until side effects and that was enough to help convince my consultant to do the gastric emptying study too.

Kittykat I hope you are getting on okay after the pain and bleeding. Thinking of you.

Wildmtnhoney I'm so glad you're getting somewhere with the exclusion diet after all this time!

I thought I would drop in with a quick update!
So I'm pretty sure now that my answer is the gastroparesis and IBS rather than IBD but I like to keep up a bit with things on here so will pop in from time to time. I do plan on getting the gastro consultant to recheck the inflammation from my colonoscopy biopsies at some point though!
I've actually been having issues with constipation these days, rather than diarrhoea and I'm not sure which is worse haha. But some of that could be a combination of meds and the fact there is very little fibre in my diet.
Next Saturday I'm having my NG tube changed to an NJ tube as I'm just not tolerating the feeds as well as we had hoped for, so that's actually a bit exciting! The consultant did mention very briefly the possibility of a surgical tube in my future but also things like botox in the pylorus and a gastric pacemaker.
I've got to come off ondansetron (Zofran) as it can slow gut motility and we will look for something else I can take as my stronger antisickness as my usual one doesn't always cut it. I'm staying on erythromycin too.
If I'm having trouble with the NJ feeds symptom wise we will look at doing a small bowel transit study to see whether my gastroparesis is also affecting that too but that's not something I will think or worry about yet!

So yeah, feeling alright about it all now and relieved to be trying the NJ as I'm struggling with the NG and have had a few nights I couldn't face putting feeds on at all. But I've gained a couple of pounds and my period has come back after being MIA for a year :)
 
Sarah - Thank you for the advice. Actually, reading your posts was what made me read up on it and made me realize gastroparesis could explain the symptoms that didn't fit with post-infectious IBS (loss of appetite, unintentional weight loss, only being able to eat small amounts at once) - it was a huge help and what led me to the diet changes that helped me slow down weight loss. Thank you!!

I saw a dietician the day after my test and she was helpful, but it took so long to see her that I had already read a lot so she mostly told me to keep doing what I was doing. It was helpful, though, to know I was on the right track and she told me a couple of new things which helped. My BMI was 27.5 when this started and it's down a little over 3 points now to 24.3. 13% of my body weigh in less than 3 months. Unintentional. It's been slowing down recently which is good :). My normal doctor said it was ok to lose until I got to a BMI of 22-23 and then I should work hard not to drop below that. If things are still weird then, I guess I will just have more protein shakes as I tolerate liquids well.

Oh, you probably have all the information you need about gastroparesis, but I thought I would share the link of the paper I found most helpful, just in case it was helpful to you: https://med.virginia.edu/ginutritio...s/199/2014/06/ParrishGastroparesisArticle.pdf


Wildmtnhoney- that is so great that eliminating tree nuts is helping. That's great!
 
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Sarah - I'm so glad you finally got properly diagnosed and seem to be getting good treatment!

As for me, it's been decided that I'm having Nissen Fundoplication. When 120 mg of Nexium daily doesn't do the trick, it's time to consider your options. Since I have poor esophageal motility they are concerned about difficulties swallowing post-op. The surgeon claims it's about a 50/50 chance/risk of it going very well or that the results won't be so great.

Despite that, I've decided to go for it. I've tried all the medications, I'm on astronomically high doses of it all and still there's barely any relief. The doctors agree that if I stay like this for 10-15 years, my esophagus will be a total mess.

So I'm super super nervous. There's still a while to go, I'm having an appointment in may to discuss everything with the surgeon and the actual surgery won't happen until after the summer. But I have a lot of anxiety about it. I keep thinking I'll die during surgery and never wake up. It's pointless anxious thoughts but I still struggle with them.

Anyone whos had this, or any GI surgery really, feel free to share your tips on dealing with pre-op anxiety!

Hope everyone is doing well!
 
Izzie said:
Sarah - I'm so glad you finally got properly diagnosed and seem to be getting good treatment!

As for me, it's been decided that I'm having Nissen Fundoplication. When 120 mg of Nexium daily doesn't do the trick, it's time to consider your options. Since I have poor esophageal motility they are concerned about difficulties swallowing post-op. The surgeon claims it's about a 50/50 chance/risk of it going very well or that the results won't be so great.

Despite that, I've decided to go for it. I've tried all the medications, I'm on astronomically high doses of it all and still there's barely any relief. The doctors agree that if I stay like this for 10-15 years, my esophagus will be a total mess.

So I'm super super nervous. There's still a while to go, I'm having an appointment in may to discuss everything with the surgeon and the actual surgery won't happen until after the summer. But I have a lot of anxiety about it. I keep thinking I'll die during surgery and never wake up. It's pointless anxious thoughts but I still struggle with them.

Anyone whos had this, or any GI surgery really, feel free to share your tips on dealing with pre-op anxiety!

Hope everyone is doing well!
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Be encouraged. You will be okay. I have had surgeries for fistulas, an abscess and had a reseection. I have been nervous but they turned out fine.
 
Izzie, I really hope the surgery goes well! I know you've been suffering for a long time, so hopefully this will finally be the thing that gets you some relief. Please keep us posted! I haven't had any surgery myself so I can't give you any advice, but I really hope it goes well and improves your quality of life.

Sarah, how's the NJ tube going?
 
Hi Izzie,

I had a lot of surgery before, most of it was emergency, so really no time to sit and think for very long. The ones I had to wait for were the most stressful. I tried to stay very busy with other thoughts and small projects to distract me. I read a lot too and that helped.

I hope things go well for you.
 
Dahlia thank you for the link, I've read most of that separately but it was handy to have everything all in one place! I'm glad the dietician was helpful for you too :)

Izzie so good to hear from you! It sounds like the surgery is worth a try for you and I really hope you're in the group that get some relief from it. I've had four surgeries so far, two were abdominal and done laparoscopically. I know it's done differently here in the UK but your surgeon will be able to answer a lot of your questions when you meet them. I always find it helps to have questions written down and then you can go through the list, I also write down brief answers so I can look back over them. Some operations also have a generic information leaflet which helps! In terms of the actual operation you will have pre-op tests done to make sure they are aware of any risks early on and you will generally see the anaesthesia team before surgery too. Here you meet your anaesthetist on the morning of your surgery and they go through risks and what to expect. The chances of never waking up are incredibly small. You're likely to wake up sore and nauseous but they are very good at putting IV meds in quickly to stop that. Also with it being an abdominal surgery if they do it with laparoscopy they will inflate your abdomen to make your organs separate and make it easier for them to see what they are doing. That will cause some shoulder pain as it presses on your diaphragm but it only lasts about 24 hours and will be better propped up rather than lying down. They will tell you whether it will be a day surgery or not but even if it is day surgery take an overnight bag just in case as you never know how your body will react to the surgery or anaesthetic.
I also found it helped me to get everything sorted well in advance so I packed my bag a week early as much as I could, I made sure I had easy to prepare meals in or something batch cooked I could just put in the microwave and before I left home I set my bedside table up with a drink, meds, snacks and anything I might need to hand the first night home :)

Cat I go in Saturday for the NJ so still with the NG for now but really looking forward to getting the NJ over and done with :)
 
Hi all,

It's been a while since my last message but I just wanted to give you all an update. So I went to the urgent care the morning after my last message and told them everything that was going on and if they could run any tests while I was there. They said that the most they could do is another blood test to monitor my anemia, but the only way to get a CE or MRE done is to request one from my PCP/GI. I messaged my GI telling her that I would prefer to have one, if not both of these tests done. Because even if it turned out to be normal again, at least I'd have a peace of mind.

She put the order in for an MRE, and I finally got it done on the 9th, which was 3 days ago. I just got the results today, and everything was normal. No bleeding or anything unusual in the small bowel. My GI messaged me saying that the most we can do at this point is manage my pain and anemia, and she is going to refer me to a care team at Stanford Hospital.

So yeah, that's all that's been going on. Obviously I'm now I'm still undiagnosed, but at least we have looked at the area that hasn't been checked. I hope the care team will be able to figure out ways to help me manage my pain better. As for the anemia, we will continue with the vitamins and maybe meet with my gyno to discuss the possibility of endometriosis and putting me on birth control pills.

Thanks for all the support everyone, it's been a tough couple of months but I hope that managing my pain will help with my symptoms a bit, at least enough to help me get through the day without having to leave school or laying in my bed 24/7:smile:
 
Hi kittykat

I am happy to hear from you. :) I'm glad that now you have some answers. I hope it is going to get better from here on out. You are a very courageous young lady and I am proud of you for the effort that you put in. It isn't easy being young and trying to get adults to believe you, especially a doctor. Be sure to keep in touch buddy, I think I can speak for all of us on the forum when I say that we really appreciate you.


I wish you all the very best,

cmack
 
Kittykat good on you for pushing for what you needed. Sorry you are no closer to an answer, but at least you know the serious things have been ruled out as they do show up on those tests (eg cancer). Your anaemia is most like due to being female and bleeding. A lot of women have low iron or are anaemic. Endo sounds possible that can grow around your Bowel too - good idea looking into that.
 
Kittykat I'm glad you got the MRE done and you've at least got that peace of mind! Like someone said above endometriosis can grow on the bowel giving symptoms there too.

I thought I would give a quick update on the NJ situation! Maya if you have any advice/information that might be relevant I would really appreciate it after the events of the last two weeks.

So to cut a very long story short the NJ didn't go well, shortly after I was vomiting violently, tachycardic, faint and weak, ended up in A&E on IV fluids and antisickness, discharged with instructions to set feeds up as sometimes it helps things settle. Set my feeds up at 20ml an hour, 12 hours later I had colonoscopy prep level diarrhoea and 9/10 abdominal pain. Out of hours doctor came out said I needed to try and get hydrated or I would have to go back to A&E, so ran water through the NJ overnight at 20ml an hour again. Woke up vomiting dark green bile and really quite out of it. Mum called an ambulance, blood sugars were very low (1.9 in UK measurements) and obs weren't great so went back to A&E where they found my bloods were really off. My blood showed high levels of acid or something? And my electrolytes and kidney function was off. So I spent a few days on an assessment ward just on fluids and dextrose bags, no nutrition, while I waited to get a bed on the gastro ward. At this point I was too weak to do anything and had to use a commode with help getting on and off it which was scary.

Wednesday feeds were set up again and again 8ish hours later the diarrhoea started again! So Thursday we were back to nothing going in just IV fluids while they did stool tests to make sure it wasn't something like c. diff! Nothing showed so the consultant determined my body was basically rejecting the NJ. So out it came! I started to feel less sick already within a few hours.

Spent the weekend with no tube just letting things settle a bit, on Saturday I managed the first oral intake in a week, things were till dodgy and I've lived on IV ondansetron the whole time as well as the fluids over the weekend. Monday they put at NG back in as I desperately need the nutrition, I've lost 8lbs I really couldn't afford to lose.

So yeah, came home from hospital Wednesday, I'm still very weak but I'm now managing to wash myself and get around the house so that's good!

One thing that I found interesting is that all the time I had the NJ in and was struggling my CRP was raised and I had a higher temperature bordering on a fever. So I'm not sure what happened there but I will be asking the consultant whether it could be linked to the inflammation on my colonoscopy biopsies.

I'm waiting for my follow up appointment to discuss where we go from here but it's scared me a little bit, if my body reacted that way to the NJ I have no idea what we will do next. The NG is a bit of a struggle but for now I'm technically tolerating it but if the gastroparesis gets worse I have no idea where that leaves me.
 
Sarah, honestly, I have never heard of anything like that.

My daughter had cramping, diarrhea and belly pain when we first started the NJ tube - that is called feeding intolerance and it was just because she was not used to eating and her intestines were not happy with the formula. But that gets better in a few days - we used Levsin till it got better and very slowly upped the rate of the feed.

The only other thing I can think of is Refeeding syndrome - that can cause tachycardia, electrolyte issues (usually phosphate and potassium) and fatigue and nausea. My daughter also had that the first time we used an NJ tube but I'm not sure if that's what you had since you were getting feeds through the NG before this, right?

My daughter had not been using her NG tube (she kept throwing up) and she was so underweight and malnourished that her body just could not handle the extra calories.

I honestly don't know - I would ask about both things, though neither fully explains what you went through. I know you are pretty malnourished too, so perhaps it was Refeeding Syndrome even though you had been on the NG feeds?

The only other thing I can think is a reaction to sedation (if you had any) when they placed the NJ tube. Were you given anything for that? Here NJ (and GJ and J) tubes are placed with sedation usually (for both kids and adults).

It does leave you in a tough spot, if you cannot tolerate the NG tube feeds or NJ tube feeds. I guess the only other option is TPN, which is far from ideal.

I am SURE you do not want to repeat that experience, but I wonder if it would be worth trying the NJ tube again in the future. With very, very slow feeds - work your way up from 5 mL/hr.

Did they check the placement of the NJ tube when you were in the hospital? Because vomiting can often displace it - so it ends up back in the stomach.

What formula are you using? Was it the same one you were using when you had the NG tube?

I honestly have no idea, Sarah, I've never heard of anything like this. Sorry :(.
 
Thank you, it seemed to confuse my doctors too!

Before the NJ I was still having my NG feeds and bits of food so I'm pretty sure I wasn't refeeding, my NG feeds were at 40ml an hour over 20 hours. A&E were pretty certain my electrolytes were standard dehydration as they righted themselves with a few Hartmans bags and once feeds were started again I had no trouble.

I did have sedation, though I had the same for my colonoscopy and upper endoscopy so I'm not sure?

To be honest I've already contemplated trying it again in the future because I honestly don't feel like the NG feeds are a long term solution. I would stipulate that the only way I would try is as an inpatient stay and like you say start off very slowly with feeds. I'm on Vital 1.5kcal so it's partially broken down so again I think I would ask about maybe an elemental feed? I might be able to work back up to the Vital 1.5kcal after if I tolerated elemental etc.

The NJ was in a perfect position despite the vomiting so that was good at least, although having the NJ pulled out was not fun, mine was 160cm in.

One thing I did think I may bring up is setting a time limit on the NG to switch to a PEG because I don't want to have the NG for months and months on end, I honestly don't feel like the tube feeding is going to be temporary. It's selfish and potentially a bit vain but I don't want to spend forever with the NG, I'm 26 and very single and not exactly dateable even without the NG, the NG just makes it even harder socially and I don't want to spend say another year with the NG stuck to my face. But the other side of that is at least if we decided to try jej feeding again they could convert the PEG to a PEGJ.

It's honestly really disheartened me and part of me feels like I should have sucked it up longer but I honestly haven't ever felt that ill and weak, I was too scared for my health to keep going like that :(
 
Don't beat yourself up - I think anyone if your position would have asked to pull it out.

My kiddo also started out with a GJ. That is the nice thing with a G tube - it can be converted to a GJ if necessary. For many people with Gastroparesis, GJ tubes work. In my daughter's case, her motility was so bad that the GJ kept flipping back up into her stomach. But that is not that common.

My daughter felt the same about the NJ tube - hated having a tube in. She had it 13 weeks and then switched to a GJ. She was THRILLED to switch to a GJ - much easier for a teenager! She absolutely hated the NJ tube (though it worked very well for her).

The surgery for the GJ tube wasn't too bad at all - 2-3 days in the hospital. The surgery for her J tube was much harder to recover from.

1.5 kcal formulas may be hard to tolerate - some people do better with 1.0 formulas. My daughter also needed an elemental formula - the semi-elemental (Peptamen Jr) caused a LOT of diarrhea.

Good luck. I wish I had more advice.
 
Hi Sarah,

I really hope things get better with time. I'm also very much single because of my situation, so I feel for you in that respect. I believe there is someone out there for every one of us, it's just a matter of crossing paths with them.

I suspect the doctors will figure it out eventually, hopefully sooner rather than later. I think anybody would be frustrated if they had to deal with what you are going through.

best wishes.
 
Sarah - I'm so sorry that things are so difficult right now. I was really hoping the feeds were going well and would help a lot.

Kittykat - I hope the pain and anemia management can help you feel better. Chronic pain is rough.

I had my last GI appointment. They confirmed that the diagnosis after all the negative tests is post infectious IBS. Both my GI and I think I also had (have?) mild gastroparesis even with the negative test. Gastroparesis can be caused by an infection. It's hard to explain no appetite for months and 25lbs of unintentional weight loss with IBS, but the two together cover all the symptoms. I don't need to go back unless I'm still having symptoms in a few more months. The expectation is that I will slowly get better with time. That's a good thing and I am thankful for it.
 
I found out today that the GI group I was seeing is finally covered by my insurance again! Oddly enough, I went on their website today and saw the news and they just started allowing my carrier again! I called to make an appointment with a different GI doctor than the *jerk* I saw before who made me feel like a hypochondriac. I don't ever want to see him again. I actually scheduled my appointment with a female doctor this time since I seem to have more luck with them.

Anyway, this couldn't come at a better time because my nausea, bloating, and discomfort - especially in the morning - needs further testing. I have been eating a lot less lately because I eat a few bites and then quickly get full. I very rarely finish a meal or get more than 1/3 of the way through even though I was very hungry before the meal. After talking to some people here, it sounds like it may be gastroparesis. I also have a friend at work whose doctor (the same one I'm actually seeing) suspected gastroparesis (she was never diagnosed, though, since she never had the test). I wake up in the early mornings and I am usually still full from the night before and VERY nauseous. Zofran has become my friend. I'm hoping this appointment - on June 7th at 3:15pm - brings some hope of answers.
 
MissLeopard83 said:
I found out today that the GI group I was seeing is finally covered by my insurance again! Oddly enough, I went on their website today and saw the news and they just started allowing my carrier again! I called to make an appointment with a different GI doctor than the *jerk* I saw before who made me feel like a hypochondriac. I don't ever want to see him again. I actually scheduled my appointment with a female doctor this time since I seem to have more luck with them.

Anyway, this couldn't come at a better time because my nausea, bloating, and discomfort - especially in the morning - needs further testing. I have been eating a lot less lately because I eat a few bites and then quickly get full. I very rarely finish a meal or get more than 1/3 of the way through even though I was very hungry before the meal. After talking to some people here, it sounds like it may be gastroparesis. I also have a friend at work whose doctor (the same one I'm actually seeing) suspected gastroparesis (she was never diagnosed, though, since she never had the test). I wake up in the early mornings and I am usually still full from the night before and VERY nauseous. Zofran has become my friend. I'm hoping this appointment - on June 7th at 3:15pm - brings some hope of answers.
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I hope it will bring answers for you.
 
I hope the new appointment helps, miss leopard. I went ahead and started the gastroparesis dietary advice on my own and it helped me. It was nice to have something I could do to make things better than I could control. I can tell you what I do if that would help. i hope the appointment goes well and that the new doctor is better. Doctors who think you are making it up are useless. Who would make up a GI complaint? The tests are so unpleasant X_X
 
Dahlia said:
I hope the new appointment helps, miss leopard. I went ahead and started the gastroparesis dietary advice on my own and it helped me. It was nice to have something I could do to make things better than I could control. I can tell you what I do if that would help. i hope the appointment goes well and that the new doctor is better. Doctors who think you are making it up are useless. Who would make up a GI complaint? The tests are so unpleasant X_X
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Did starting on medication help you? I've heard that there are various meds that can stimulate digestion like Reglan. I'm very leery about starting on anything like erythromycin because I worry about antibiotic resistance. Zofran seems to settle my nausea, but it can also cause constipation which worsens my IBS.

The doctor I saw - there are so many things wrong with him. He works in a great group, but he and his nurse acted aloof like I could not possibly have anything wrong with me. The nurse was also abrupt when I would ask if my test results had come back - instead of asking if I would like them over the phone, she just blurted out "NEGATIVE." It was so rude! She is not a doctor and yet she acted like it was OK for her to treat me like a number. The doctor even told me stories about other patients - including one he treated that swallowed taped razor blades and went to the ER. He actually told me that he yelled at that patient because he was wasting his time!!!! I don't care how ridiculous the patient seems, that was a definite cry for help and he treated him like, "How dare you do something like this so I have to waste time on you!" I even heard him next door with a patient while I was in the exam room and he was giving that patient a hard time! Then, next thing I know, he's telling me that the woman has cancer and was asking if anything could be done and he told her that we've run too many tests already and she needs to accept her diagnosis!!! He never did mention names, but it really bothered me that he said these things. All I wondered was, "Who is he telling my story to?" I actually filled out the feedback form that they sent and told them what he was doing. Next thing I know, he was on leave. I'm not sure if he was disciplined, but at least they know he was being unethical. :ybatty:
 
Miss leopard
Erythromycin is used in delayed gastric emptying
Because as an antibiotic it is rarely used in people anymore
Due to the unpleasant side effect of making your stomach move
It is given at sub therapeutic doses
And has very few side effects
Need to be taken in the liquid form to be more effective
About 30 minutes prior to eating increase emptying

Ds has been on it for close to two years
Reglan has Parkinson's like tremors associated with its use that don't necessarily go away once the med is stopped

The try to avoid using reglan for gastric emptying in kids if possible

Tagging Maya142

Good luck
 
We were too afraid to try Reglan - it can cause tardive dyskinesia which may or may not go away after the medication is stopped. Our GI will only use it if necessary and only for a few months at a time.

My daughter responded well to Erythromycin for a while. She used to liquid form and took it before eating. It did cause reflux, but that was the only side effect she had.

She has pretty bad Gastroparesis - she lost about 30 lbs, was constantly nauseous, couldn't eat, threw up - the whole thing was awful. She was hospitalized three times and was so underweight they were worried about her organs shutting down.

She is now on Domperidone (which is not approved in the US, so we get it from Canada) and is doing much better. She also has a J tube and gets feeds through that.

Did they already do a gastric emptying test for you? Typically if more than 10% of the meal is left after 4 hours, you are diagnosed with Gastroparesis.
 
Miss leopard- I am not on any meds. By eating differently and adding liquid meals, I was able to get my calories up so weight loss is slow enough that it's ok at this point. Relegan is the drug that my GI mentioned, but both of us thought I was ok just managing how I eat for now. By the time we did the test I was able to eat more and my study showed 7% left at 4 hours so I don't have a diagnosis of gastroparesis. I think I just got it from the infection and it was mild enough not to show up by the time we tested.

I had some extra weight so the 25 lb drop got me back to the normal range. I think I'm allowed to lose about 12 more lbs according to my doctor before I need to force myself to maintain. I don't have an appetite and I'm not trying to lose weight, but I figure I might as well let myself drop to my ideal weight before forcing myself even more. Fwiw, I'm 5'9 so those numbers aren't as large as they would be on a smaller person. I looked normal before and I look normal now, just a slimmer normal. I tolerate liquids well so I should be ok maintaining when we get there. Muscle milk is my liquid of choice :)
 
Maya142 said:
Did they already do a gastric emptying test for you? Typically if more than 10% of the meal is left after 4 hours, you are diagnosed with Gastroparesis.
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No, I'm hoping the GI will order it. My friend saw the same doctor and she ordered the GET test for her (my friend hasn't done it yet) and she recommended the doctor for this reason.
 
I had a very bad bout of GERD on Wednesday night. I think it was because I had been out all day at doctors appointments and then went home and ate before falling asleep. I woke up at 3am with some horrible acid pains in my throat and chest. Usually, laying on my left side helps as I know it aids with digestion, and it finally went away.

Thankfully, I've also realized that I cannot eat regular, full meals in the evening so I am scaling back. If I eat full meals, I wake up very nauseous the next morning with food still in my stomach from the night before. I usually brush my teeth before leaving for work and the action of putting the toothbrush near the back teeth and tongue causes me to gag severely. If I eat relatively light, or even earlier in the evening, I'm much less likely to be sick when I wake up in the early morning. I think it's stomach paralysis, for sure.
 
Maya,sorry for the delay, to be honest I've just been exhausted so not online much. I've also been doing a lot of thinking about everything as I see my gastro doctor on the 2nd.

I'm more and more wondering whether the out of hours doctor was right and I picked up a bacterial infection during placement then had the feed tolerance problems. It would sort of make sense? So I think I am going to say I will give the NJ another go but only if it can be done inpatient so that we can sort things as they happen without having to go through two lots of ambulance rides and A&E and the dangerous blood sugars and dehydration and everything. I think it's a reasonable request to be honest. I'm also going to request we use a more broken down feed and a much slower starting rate! I also found out you're meant to leave the NJ 24 hours without feeds to let it settle, so I will be doing that too!

I've put some weight back on since discharge, I'm still just about tolerating the NG feeds just with the usual nausea/pain/fullness/reflux, so that's something. I'm still very weak and have no energy or stamina, so I think I may have to bite the bullet and get a wheelchair. I've been fighting it for ages, but I miss being able to do things like go shopping or contemplate days out. Yesterday I spent maybe 15 minutes maximum walking (about 7.5 mins each way with a good hour and a half break in the middle) and had to have a three hour nap when I got home. I miss participating in life.

Miss Leopard, I hope the GES doesn't take too long to come through for you. Diet wise liquid calories will really help so depending where you live like Ensure/Boost etc, a dietician should be able to help you find one that suits you. Also low fat, low fibre, small meals more frequently, lots of liquid with your meals and soft foods will also help :)

Meds wise I believe in the US domperidone is one you have to get from another country, but it is generally less risky than metoclopromide (Reglan) and personally I found it really helpful. I was one of the unlucky few to develop an irregular heartbeat so was taken off it and now I'm on erythromycin, it doesn't feel like it helps massively, but I do notice a little difference after a few days of not taking it (I found that out in hospital). Let us know how you get on!
 
I think it's great that you're trying it again Sarah!! Good luck. It makes a lot of sense to do it inpatient and to use a more broken down formula - we found elemental worked best for my kiddo. We use Neocate but that is generally a pediatric formula (though it can be used for adults). I don't think we waited 24 hours to start feeds - we probably just waited 6 or 8 hours - till the sedation had completely worn off.

Once you gain weight and start tolerating feeds better, you will feel stronger and less exhausted. A wheelchair is a good idea while you are waiting to feel better.

Erythromycin also can cause heart issues - long QT syndrome I believe, so you need to be monitored while on that too.

Fingers crossed - hope the NJ tube goes well this time!!
 
I also have gastroparesis caused by gastroduodenal crohns, and found the best feed was elemental 028 extra. The main problem with it is that is fewer calories per ml.
 
Well, I'm planning to try again, however my GI obviously has to agree to it so that could change! I don't think it will happen quickly with wanting to do it inpatient, obviously they will need a bed so it can be a lengthy wait with it not being anything urgent. I think the main elemental one here is the Elemental 028 although my dietician has already mentioned one called MCT which we may try. We didn't change the feed last time because the theory was that because I tolerate the Vital 1.5kcal through my NG it should be fine through an NJ, but maybe that wasn't quite true. Ahh okay, I'm guessing different hospitals have slightly different protocols then.

Yeah I thought it might be a way to give me some normality in this interim period and it will also help with the days when POTS is bad.

Yeah I get an ECG done now as part of my GI appointment so that's being looked after thankfully!

Littlemissh is Elemental one that can only hang for 4 hours? How do you manage with that overnight? Or do you do daytime feeds? Sorry for all the questions! I know the MCT is a Nutricia pack so can hang 24 hours which I think is why they would rather I try that but I want to be able to discuss all the options with them
 
Hi,
I have just joined this forum to try and see if I can get some answers to some questions, thank you to anyone who takes the time to read this and reply

For about a year now I've had blood with every bowel movement and mucus and when I went for a Colonoscopy I was printed off a sheet that told me I had mild patchy colitis in three sections of my bowel and rectum I was told to wait to see someone who would give me treatment for it. Well when I went to that appointment it was as if she didn't know I'd even been for a colonoscopy she told me I could live with it and it was probably a hemmoroid and she wanted to book me in for a surgerical procedure to check for inflammation and do biopsies if there wasn't a hemmoroid. Because I was feeling out of sorts out didn't occur to me until I left that I'd already been proven to have inflammation and had numerous biopsies from each inflamed section. I still don't know if they showed anything. She wouldn't even look at the pictures because what I'm passing is hard to describe she just said I've seen it all before i don't need to look at the pictures. Well I felt pretty let down after all that. Cancelled the procedure that seems unnecessary. Since this it's just got worse I am now passing what appears to be like pink tissue. I've never seen anything like it before. I'm also passing candida and have gone on to a gluten free diet. I'm due at a different Colon specialist next month to try and find out what's going on but I need to know if any of this sounds like crohn's? I'm absolutely exhausted, hurting and I've had rheumatoid arthritis since I was three.

Sorry to go on but I'm desperate to find answers. I'm going for full bloods next week and hoping something is picked up in those. No one has asked me for a stool sample.. Should I request it?
How did you all get diagnosed?

Thanks to everyone who takes the time to read this and answer Evie xxx
 
Welcome Evie,

It sounds like you have poor communication between doctors going on. I would tell the colon specialist about that situation. It could possibly be Crohn's or UC. I would ask for a stool sample to be done as well.


I hope the best for you,

cmack
 
Hi,
Thanks for your reply. Yes I am having issues with specialists at present but I will be fighting for help when I next go. Thank you for your advice I will be asking for a stool sample. Hopefully someone will listen to me this time.
Thank you, all the best to you too.

cmack said:
Welcome Evie,

It sounds like you have poor communication between doctors going on. I would tell the colon specialist about that situation. It could possibly be Crohn's or UC. I would ask for a stool sample to be done as well.


I hope the best for you,

cmack
Click to expand...
 
sarahfh - if you have a backpack, just stick an icepack in it - then it can hang overnight.

That said, we do an elemental feed and if it's cool in the house, we don't usually stick an icepack in and we've been fine. If it's hot, then I will definitely use an icepack.

At our hospital ANY formula is not allowed to hang more than 4 hours - the nurses are always coming in to change it.

Good luck!!
 
Hi Angie, welcome. I think even your normal doctor can order a stool sample, and they should do it if you tell them how weird things are and ask for one, so that your colon specialist has the results when you go next month. I would definitely ask for one! I'm sorry the first doctor you saw was so strange. It sounds like she didn't even read your colonoscopy report. I hope your new doctor is better.


Sarah - hang in there. I'm sorry things are so difficult and I'm glad you are getting some good advice here.
 
sarahfh said:
Miss Leopard, I hope the GES doesn't take too long to come through for you. Diet wise liquid calories will really help so depending where you live like Ensure/Boost etc, a dietician should be able to help you find one that suits you. Also low fat, low fibre, small meals more frequently, lots of liquid with your meals and soft foods will also help :)

Meds wise I believe in the US domperidone is one you have to get from another country, but it is generally less risky than metoclopromide (Reglan) and personally I found it really helpful. I was one of the unlucky few to develop an irregular heartbeat so was taken off it and now I'm on erythromycin, it doesn't feel like it helps massively, but I do notice a little difference after a few days of not taking it (I found that out in hospital). Let us know how you get on!
Click to expand...

Thank you! I am really going to push for a GES because something is definitely going on with my stomach. It has been causing me a LOT of problems lately but it has caused problems all my life.

I just looked at the prices for Motileum online and it's really not that expensive. How often do you take it every day and at what dose? I want to be able to tell my GI about it because I want to know all my options. :)
 
My kiddo takes it 2-3 times a day. The dose varies - she has taken between 5 and 10 mg. Your GI will know Domperidone, I'd guess.
 
Maya I have a backpack I've hacked to use for now while I wait for the proper one! My feed can be hung for 24 hours but I think it's because here the feed isn't put into the bags like in the US, my feed is in a sealed plastic bottle then the giving set screws onto the bottle with a tiny little valve that goes through the seal on the bottle as you screw it down.

The Elemental feed here is a powder you mix up with water and put into a container with giving set so I'm guessing that's why it's 4 hours hanging time?

I've actually seen in a cook shop a wine bottle cooler that wraps around the bottle and fastens with Velcro that has that gel stuff in so you put it in the fridge or freezer then wrap it round the bottle to keep it cool so I might try one of them :)

Miss Leopard yes your GI will recommend the dose, although there is a standard adult dose there are a few factors that might mean you need a different dose so it's best to ask your GI. They will be familiar with it as it's very commonly used for gastroparesis.
 
Hi everyone, I stumbled across this forum and was wondering if anyone could help me out.

So I've been having occult blood and mucus since January of this year. I so far have had a colonoscopy, endoscopy, and CT enterography, as well as occult blood stool tests (all positive) and a calprotectin test (negative). However, I still have bleeding as I am anemic (I'm male too, so anemia isn't as common in guys) and mucus. My GI said that I just have really bad ibs, but I know that ibs doesn't cause bleeding. It does cause gas, bloating and mucus, all that I also have, but not blood, especially mixed in the stool.
I was just wondering, even with all the tests I've had, is it possible something could have been overlooked? I'm wondering if maybe instead of an enterography i should have asked for enteroclycis, as I've read that it usually shows better pictures and distension. What do you guys think? Should I push for one of these tests? My gi might think I'm ridiculous but I just really want to get to the bottom of this.
 
Last edited:
Hi,

Welcome to the forum. I would suggest doing all the testing you need to get to the root of the problem. I don't think anyone would question you for wanting to know what is going on. I encourage you to push for answers because this type of issue needs to be addressed, bleeding coming from somewhere inside of you is always a legitimate cause for concern.

Best regards,

cmack
 

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