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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
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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.
 
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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
 
cmack said:
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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Hey man, thanks for the welcome.
I do think that I should push for the test. I just don't know if the gi I go to offers enteroclycis. Do places offer both enterographies and enteroclycis?
Either way, I hope my gi will agree. He's kind of a hard ass (pardon my language) and it took a whole lot of convincing to get him to agree to the CT. I don't know if he'll be willing to do another test.
 
You might want to try a second opinion if you don't get a diagnosis from your current doc. I'm not sure about the different procedures that each doctor may or may not tend to use. You could ask for a referral to one of your current doctors colleagues. Some doctors can be dismissive or stubborn for sure. You need to get answers, so I really would keep pushing until you find out what is wrong. You certainly need to find the source of the blood because ignoring it could be a huge mistake, I would do whatever it takes.

Just my thoughts.

cmack
 
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[/QUOTE]



Sarah- No I hung it for 12 hours, I used to decant into flo-care containers which then went through my pump.You can get it in cartons or as a powder in the UK supplied and delivered by a homecare company. I used the cartons.
 
thataustrian said:
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.
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Have you had a Pillcam? I would be pushing for that. There is a lot of small intestine between a upper endoscopy and colonoscopy. It has good sensitivity for mucosal injury. If that is clear, I think you would be clear of anything really serious going on.
 
I've been having a lot of intestinal problems again. My appointment with the GI is one week from today and I was seeing her to diagnose possible gastroparesis. My grandmother has it, which I only found out this weekend after I mentioned that I had an appointment - I share so many problems with her! But the guts are seriously irritating me and I don't know why. When I had my ovarian cyst excised and drained, I thought it solved the problem of chronic constipation (I was actually quite regular for about 3 months). Then, it started up again and I don't have a BM for DAYS even though I drink enough water and other stuff throughout the day. UGH! GI issues are so aggravating!
 
Lorikeetie said:
Have you had a Pillcam? I would be pushing for that. There is a lot of small intestine between a upper endoscopy and colonoscopy. It has good sensitivity for mucosal injury. If that is clear, I think you would be clear of anything really serious going on.
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I haven't had a pillcam. I just figured that a CTE would be able to show everything. What would the pillcam show that a CTE can't?
 
Littlemissh Ahh that's good to know, thank you :)

MissLeopard for some people gastroparesis can extend down to the bowels so it is worth mentioning it at your appointment for sure! It could also be that your ovarian cyst has come back so it may also my worth checking in with your gynae too. Also you mentioned you take Zofran? That is well known for causing constipation too so that might be worth considering.

I've got my GI appointment on Friday so I'm getting a little nervous now but I'm sure it will be fine. I also spoke to my dietician team today and asked about the possibility of changing feeds if we try the NJ again and we may do that but they would prefer to keep me on my current feed as I tolerate it well through my NJ, it is already partially broken down and it's higher calorie per ml so it does give us more scope to start feed off at a super slow rate. But obviously they may change their minds on that if needed if we do try the NJ again.
 
I feel badly for everyone here whose symptoms are not being properly validated by a diagnosis. I had ulcerative colitis when I was a teen and into my twenties, took sulfasalazine and the bleeding cleared up. Fast forward 30 years and throughout that time had bouts of inflammation all throughout the bowel, one time my intestine -transverse colon felt like it had a stricture in it. Lots of bizarre symptoms which got better when I adhered to the paleo diet and juiced carrots and spinach. My symptoms seem to stay in esophagus, stomach, duodenum, colon, and rectal area only, as evidenced by my being heavy. Well today, after two months of pain on lower left, very narrow stool, and feeling like my intestine is being pushed through my rectum (sorry but tons of pressure), I had a colonoscopy. What was the diagnosis? Diverticulosis...not even diverticulitis to show all the inflammation I've been experiencing. They had the audacity to say I need to eat more fiber. I eat lots of fiber! The outpouching of diverticulosis is being caused by inflammation weakening my colon :( I don't know if my doctor knows what he's doing:( Because I do eat foods I'm allergic to which is most foods sadly, and because I eat too much I do know I need to change my diet, but I would have liked a little more help than just giving me an antacid. The pain and inflammation is in the colorectal area but the doc found lots of inflammation in stomach and esophagus (Barrett's esophagus). I hope I can help myself. I hope that you all get dx but with or without a diagnosis, we all need to help ourselves. Probiotics, the right diet, etc. Best wishes, Kelly
 
Hi Kelly,

I wish you the best. You really may want to consider a healthier diet. I'm sure you know this already, however I had to change my diet drastically. If you need advice you can ask me by pm, I would be happy to help you. All the changes I made were to diet and supplements. Thankfully, I'm in remission due to diet and supplementary vitamins alone. Hit me up any time, I like to help people and I hate to see anyone struggle.

Your teammate,

cmack
 
sarahfh said:
MissLeopard for some people gastroparesis can extend down to the bowels so it is worth mentioning it at your appointment for sure! It could also be that your ovarian cyst has come back so it may also my worth checking in with your gynae too. Also you mentioned you take Zofran? That is well known for causing constipation too so that might be worth considering.
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I did not know that gastroparesis could extend past the stomach. I don't have any back pain like I did with the ovarian cyst, but I am going to push for another pelvic ultrasound at my next OB/Gyn visit on 7/6. I haven't been using the Zofran that much at all - none in the last 2 weeks - but I am on a new medication for anxiety and the dose was just increased. There is a very small percentage of it causing constipation, but not enough for it to be "common." I have started trying to increase my fiber intake to clear the constipation, which helps a great deal, but it's also worsening the full, bloated feeling in the morning. :(
 
Yesterday, I had horrible stomach pain as I was getting ready for work - so much so that I ended up lying down flat on my back which is the only thing that seems to help. I try my hardest to not take antacids or Zofran unless absolutely necessary because of the undiagnosed stomach problem - I'm not sure if it's low stomach acid or gastroparesis or both. It felt like I had a brick sitting in my stomach - very similar to the way it felt when I was on Prilosec on the advice of the former GI doctor I was seeing. Thankfully, my appointment is this upcoming Wednesday with the new GI doctor. I have a sneaking suspicion that she'll want to do another upper GI endoscopy in addition to a GES.
 
MissLeopard83 said:
Yesterday, I had horrible stomach pain as I was getting ready for work - so much so that I ended up lying down flat on my back which is the only thing that seems to help. I try my hardest to not take antacids or Zofran unless absolutely necessary because of the undiagnosed stomach problem - I'm not sure if it's low stomach acid or gastroparesis or both. It felt like I had a brick sitting in my stomach - very similar to the way it felt when I was on Prilosec on the advice of the former GI doctor I was seeing. Thankfully, my appointment is this upcoming Wednesday with the new GI doctor. I have a sneaking suspicion that she'll want to do another upper GI endoscopy in addition to a GES.
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My best to you.
 
MissLeopard sorry for the slow reply it's been a busy few days and a poorly few days.
Yes for some people they have gastroparesis and intestinal dysmotility together, they can do small bowel and colonic transit studies as well as the gastric emptying study but I think they have to be done separately if that makes sense? I always find that oats and other soluble fiber works better for my gastroparesis than insoluble fiber (shredded wheat/brown bread etc). Try having the fiber element of your diet earlier in the day, then something like a smoothie in the evening, the fruit will help the constipation but the liquid should help the morning bloating etc :) personally I don't eat anything after 6pm on my good days (bad days I don't eat at all just have my tube feed) and that's helped loads. Obviously everyone is different but that's what works for me. Definitely ask your GI for a referral to a dietician too, they will help you find some supplement drinks to help you get extra calories in. I know the US has different ones to the UK so I can't offer advice on specific brands to try but maybe someone else will be able to :)

I saw my GI yesterday and the plan is to keep going with the NG a few more weeks to build up a bit more then try the NJ again inpatient. She thinks the problems I had were a winning combination of reaction to sedation, gastroenteritis and the expected grumbles from a first time NJ placement. Just my luck huh?!
My bowels have been a bit dodgy again the last few days and I think part of it is because I got caught in the sun on Wednesday, does anyone else find too much sun upsets their bowels? Some of it was probably nerves about the appointment too but the sun exposure seemed to be a definite trigger.
 
sarahfh said:
MissLeopard sorry for the slow reply it's been a busy few days and a poorly few days.
Yes for some people they have gastroparesis and intestinal dysmotility together, they can do small bowel and colonic transit studies as well as the gastric emptying study but I think they have to be done separately if that makes sense? I always find that oats and other soluble fiber works better for my gastroparesis than insoluble fiber (shredded wheat/brown bread etc). Try having the fiber element of your diet earlier in the day, then something like a smoothie in the evening, the fruit will help the constipation but the liquid should help the morning bloating etc :) personally I don't eat anything after 6pm on my good days (bad days I don't eat at all just have my tube feed) and that's helped loads. Obviously everyone is different but that's what works for me. Definitely ask your GI for a referral to a dietician too, they will help you find some supplement drinks to help you get extra calories in. I know the US has different ones to the UK so I can't offer advice on specific brands to try but maybe someone else will be able to :)

I saw my GI yesterday and the plan is to keep going with the NG a few more weeks to build up a bit more then try the NJ again inpatient. She thinks the problems I had were a winning combination of reaction to sedation, gastroenteritis and the expected grumbles from a first time NJ placement. Just my luck huh?!
My bowels have been a bit dodgy again the last few days and I think part of it is because I got caught in the sun on Wednesday, does anyone else find too much sun upsets their bowels? Some of it was probably nerves about the appointment too but the sun exposure seemed to be a definite trigger.
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I'm having stomach pain again today and just noticed, when I went to the bathroom, that I had a lot of mucus in my stool. I just don't feel right at all today and so I've been staying home laying down. I ended up taking some famotidine just a few minutes ago to see if that stops the stomach pain, but I'm definitely mentioning this to the new GI. The good thing is that she is in a GI group that has a specialist dietician, so I'll ask for a referral. I'm trying to do a modified Paleo diet since I need to lose weight, but maybe there is an underlying issue. :(
 
I saw my GI yesterday and the plan is to keep going with the NG a few more weeks to build up a bit more then try the NJ again inpatient. She thinks the problems I had were a winning combination of reaction to sedation, gastroenteritis and the expected grumbles from a first time NJ placement. Just my luck huh?!
My bowels have been a bit dodgy again the last few days and I think part of it is because I got caught in the sun on Wednesday, does anyone else find too much sun upsets their bowels? Some of it was probably nerves about the appointment too but the sun exposure seemed to be a definite trigger.
Click to expand...

Good luck Sarah!!! Your response to an NJ tube certainly wasn't typical, so hopefully you will be absolutely fine this time. You may have some belly pain with feeds after it's placed (my daughter was given Levsin which helped) but that's usually really it.

Hope it goes well this time. Fingers crossed.
 
MissLeopard it sounds like rest is the best thing right now for sure! I hope the meds helped a little. Definitely bring it up with the GI though.

Maya thank you, I'm hoping the second attempt will go better! In theory it won't be for another couple of months yet just to give me a bit more time to put some of the weight back on, but we will see. In theory I see her again in 6-8 weeks time which is when we will arrange NJ and admission so it will coincide with her rotation on the ward, but she said if I'm struggling to just call her secretary or the dieticians and we will move the admission up so that's a relief!
I'm actually due my NG change in the next week so I'm half thinking of giving it until about a week before my next change is due, then just phone up and say I want to go ahead with the NJ. I'm still struggling with the NG feeds a bit (nowhere near as bad as your daughter did just nausea, pain and bloating) and if I'm honest I just want the NJ over and done with. Hopefully that makes sense!
 
Hi Everyone. There is some good information here! I have been dealing with flare ups since I was 17. Within the past year they have become worse and will actually cripple me. Last year I was in the hospital for a week the doctors were saying it is Crohns and then as I started getting better they sent me home and the GI doctor said well I don't feel that we need to do further testing I was very sick and ended up in intensive care. The doctors said well we really do not know what happened and to monitor my bowel movements. Then things got better for a bit. I delt with nasty bowel movements, a lot of pain, and feeling drained all of the time. Then a few weeks ago I got sick and I knew this flare up was starting, I made an appointment with my primary and he sent me back to the hospital where I spent a week while they ran tests. This time my inflamatory markers were extremely high, the calproctin numbers from my stool were extremely high. So they scheduled a colonoscopy and an upper GI. The samples came back negative for Crohns. The CT scan shows signs of it. No I just had an enterography a few days ago and I am waiting for the results. Is there anyone else in the same boat as me or can anyone please give me advice? I am miserable and very agitated
 
Hi Tim, welcome to the forum. Can I ask, where in Wisconsin are you? I'm in Madison. I was hospitalized at the UW hospital last year during a really bad flare (I had lost 17 lbs in about a month, and I was having diarrhea 20+ times per day). They are supposedly the top rated hospital in Wisconsin, but they were unable to diagnose me (I've been ill since 2009, seeing doctors in the UW system, but so far no diagnosis). So I can definitely relate to your frustration.

You said your fecal cal came back very high but the scopes didn't find anything - have they looked at your small intestine? Have you had a pill cam done? The scopes only see the very beginning and very end of the small intestine, so there's a lot there that they should investigate further. The inflammation has to be coming from somewhere in your digestive tract with your fecal cal being high. Hopefully a diagnosis is in the near future for you so that you can get on some treatment and feel better! Good luck and keep us posted!
 
Hi Tim,

Welcome, I'm undiagnosed as well. The doctors suspect Crohn's but nobody has made a diagnosis, so I'm considered to have IBD. I feel your frustration. I wish this disease was easier to figure out.


Your new teammate,

cmack
 
Well this is beyond frustrating I have had every test known to mankind and no one can seem to figure out what is going on. I got my PillCam back and my GI said its normal was totally expecting that would show something for sure. I have had so many horrible bouts of pain lasting for weeks. Tried diet changes all they things they ask, meds nothing works. Even for a diagnosis of exclusion (IBS) my GI said he hasn't really seen someone with IBS as bad as mine. (I'm sure because its probably NOT IBS) Grr so fed up. :frown:
 
BeccaB said:
Well this is beyond frustrating I have had every test known to mankind and no one can seem to figure out what is going on. I got my PillCam back and my GI said its normal was totally expecting that would show something for sure. I have had so many horrible bouts of pain lasting for weeks. Tried diet changes all they things they ask, meds nothing works. Even for a diagnosis of exclusion (IBS) my GI said he hasn't really seen someone with IBS as bad as mine. (I'm sure because its probably NOT IBS) Grr so fed up. :frown:
Click to expand...
So sorry. Maybe you need a second opinion
 
Welcome Becca,

I am very sorry to hear of all the struggles you have had. You can talk to me any time, I can relate to the frustration. pm's are fine as well. Ron may be right about another opinion.


Best regards,

cmack
 
Cat-a-Tonic said:
Hi Tim, welcome to the forum. Can I ask, where in Wisconsin are you? I'm in Madison. I was hospitalized at the UW hospital last year during a really bad flare (I had lost 17 lbs in about a month, and I was having diarrhea 20+ times per day). They are supposedly the top rated hospital in Wisconsin, but they were unable to diagnose me (I've been ill since 2009, seeing doctors in the UW system, but so far no diagnosis). So I can definitely relate to your frustration.

You said your fecal cal came back very high but the scopes didn't find anything - have they looked at your small intestine? Have you had a pill cam done? The scopes only see the very beginning and very end of the small intestine, so there's a lot there that they should investigate further. The inflammation has to be coming from somewhere in your digestive tract with your fecal cal being high. Hopefully a diagnosis is in the near future for you so that you can get on some treatment and feel better! Good luck and keep us posted!
Click to expand...

I am in the Milwaukee area and have been seeing doctors within the Aurora health care system. My fecal cal came back very high, my stool tested positive for blood, the GI doctor is suspecting to find Crohns in my small intestine. This past Friday I just had an enterography done and we are waiting on the results then we are going to do the pill cam. Past CT scans have shown signs of Crohns. I just had more blood work done and another fecal cal done and all the results were normal. I have been hospitalized two years in a row, I just got out of the hospital about a month ago again
 
cmack said:
Hi Tim,

Welcome, I'm undiagnosed as well. The doctors suspect Crohn's but nobody has made a diagnosis, so I'm considered to have IBD. I feel your frustration. I wish this disease was easier to figure out.


Your new teammate,

cmack
Click to expand...

Hi cmack. Thank you for the welcome. Frustration is an understatement being in and out of the hospital and no one can seem to figure it out is taking a toll on me in every aspect of my life!
 
I agree Tim, it is a huge understatement. I'm so sick of hospitals and clinics I wish I never had to go to one again. Oh well, I guess we have no choice but to go along with it. I hope you get answers and a proper treatment plan soon.
 
I found out today that my Enterography showed that everything was fine. I have to follow up with my GI doctor in two weeks. I think it is time for a second opinion because they are leaning towards that there is nothing wrong with me
 
TimWI said:
I found out today that my Enterography showed that everything was fine. I have to follow up with my GI doctor in two weeks. I think it is time for a second opinion because they are leaning towards that there is nothing wrong with me
Click to expand...
Agree
 
Hi Tim:

Did they put you on steroids or any other medication that might have helped heal the inflammation so they didn't see anything on the scopes? And you still haven't had the pill can, right? Surprisingly, tests can and do miss things. It would be odd for you to have a random infection that caused intestinal inflammation and landed you in the hospital two years in a row. You also have blood in your stool with is definitely not normal. I've been hospitalized and on IV steroids and the tests a month later show that everything is healed; I just respond to steroids very well and clearly have a mild case.
 
I saw my new GI doctor today and instantly knew that she'd be MUCH better than the first one - she moved away from her computer and actually faced me and was listening the entire time. She asked questions to clarify and ended up saying that it sounds like I have a slow GI tract - specifically gastroparesis. She told me that one of the classic symptoms is the one I'm complaining about which is nausea upon waking and feeling full and bloated. She gave me a lab slip, too, for stool studies - including fecal calprotectin - to see why I'm having excessive amounts of mucus in my stool. When I mentioned that I had severe food poisoning last month, she was concerned that it might be post-infectious IBS and wanted to test me for things like giardia and c.diff. among other things. I'm awaiting a phone call from their scheduling department for a Gastric Emptying Study, which I should receive in 24-48 hours. All in all, I am very impressed. She was very helpful and allayed any anxiety I had from my previous experience.

I plan to get the stool culture kit sometime in the next few days - hopefully tomorrow since I have to complete blood work from the other appointment I had today with another doctor. I'm really hoping these problems can be diagnosed and then treated so I can feel much better.
 
MissLeopard83 said:
I saw my new GI doctor today and instantly knew that she'd be MUCH better than the first one - she moved away from her computer and actually faced me and was listening the entire time. She asked questions to clarify and ended up saying that it sounds like I have a slow GI tract - specifically gastroparesis. She told me that one of the classic symptoms is the one I'm complaining about which is nausea upon waking and feeling full and bloated. She gave me a lab slip, too, for stool studies - including fecal calprotectin - to see why I'm having excessive amounts of mucus in my stool. When I mentioned that I had severe food poisoning last month, she was concerned that it might be post-infectious IBS and wanted to test me for things like giardia and c.diff. among other things. I'm awaiting a phone call from their scheduling department for a Gastric Emptying Study, which I should receive in 24-48 hours. All in all, I am very impressed. She was very helpful and allayed any anxiety I had from my previous experience.

I plan to get the stool culture kit sometime in the next few days - hopefully tomorrow since I have to complete blood work from the other appointment I had today with another doctor. I'm really hoping these problems can be diagnosed and then treated so I can feel much better.
Click to expand...
Sounds good, MissLeopard.
 
Jabee said:
Hi Tim:

Did they put you on steroids or any other medication that might have helped heal the inflammation so they didn't see anything on the scopes? And you still haven't had the pill can, right? Surprisingly, tests can and do miss things. It would be odd for you to have a random infection that caused intestinal inflammation and landed you in the hospital two years in a row. You also have blood in your stool with is definitely not normal. I've been hospitalized and on IV steroids and the tests a month later show that everything is healed; I just respond to steroids very well and clearly have a mild case.
Click to expand...

When I went into the hospital about a month ago they started me on a few antibiotics for a few days. They have not tried steroids, the thing that gets me mad is once the flare up is done they act like nothing is wrong!! I have not had the GI pill cam, I see the doctor in two weeks meanwhile I am looking into different GI doctors in my area
 
sarahfh said:
MissLeopard I'm so glad the new GI listened to you and has ordered the tests for you :) let us know how you get on!
Click to expand...

Thanks! It feels great to have someone listen and care that's on my medical team. Now, I just have to get the samples. I've been kind of "backed up" this weekend. I really wanted to get the samples tonight so I could get to the lab when they open at 6:30 and get the bloodwork done, too, before work. I'm going to give it one last go and see if I can get enough. I hate to have to do it twice because they only gave me one toilet hat and 1 tongue depressor. I was told to put at least 2 tbsp in each green jar to freeze and I have 4 other smaller jars that are room temperature. I want to get it all done at once. It's hard when I've never done this before!
 
Hi Tim: so you flare up, go to the hospital where you improve (so they put you on bowel rest) and then they send you home so that it happens all over again? That sounds awful. Do they think you are having recurring infections that clear up with the antibiotics? They thought crohn's at first but because you respond to antibiotics well they are positing recurring infections even though you have blood in your stool? It's so odd that doctors have a hard time diagnosing bowel disease. I have celiac disease as well and was diagnosed in just a month, but it takes many people as long as a decade to get diagnosed. I think doctors are too ready to assume that GI issues are "just stress" or nonspecific "enteritis". I definitely think you should push your doctors (easier said than done, I know) to give you a solid idea of what you have. It always helps to have a firm diagnosis.
 
I don't know why half of us are still undiagnosed. I think the government doesn't want to pay to help sick people sometimes. It can be very disheartening. I wish everybody the best, we all deserve to be treated as humans. Nobody chooses IBD/Crohn's, or for that matter, any disease at all! Sorry for the rant.
 
Jabee said:
Hi Tim: so you flare up, go to the hospital where you improve (so they put you on bowel rest) and then they send you home so that it happens all over again? That sounds awful. Do they think you are having recurring infections that clear up with the antibiotics? They thought crohn's at first but because you respond to antibiotics well they are positing recurring infections even though you have blood in your stool? It's so odd that doctors have a hard time diagnosing bowel disease. I have celiac disease as well and was diagnosed in just a month, but it takes many people as long as a decade to get diagnosed. I think doctors are too ready to assume that GI issues are "just stress" or nonspecific "enteritis". I definitely think you should push your doctors (easier said than done, I know) to give you a solid idea of what you have. It always helps to have a firm diagnosis.
Click to expand...
One minute they tell me I have Crohn's then they say no we don't know what you have so basically the past two years I have ended up in the hospital for these flare ups. As of now all of my blood work is back to normal. I called a different medical system here in Wisconsin, it will typically take almost a month to get an appointment, but they pulled my records from the other hospital and said I had to be seen asap because I am being ignored. I have an appointment today with the new GI doctor. I am a bit alarmed as to how fast they wanted me to come in, however hopefully they will get to the bottom of this
 
TimWI said:
One minute they tell me I have Crohn's then they say no we don't know what you have so basically the past two years I have ended up in the hospital for these flare ups. As of now all of my blood work is back to normal. I called a different medical system here in Wisconsin, it will typically take almost a month to get an appointment, but they pulled my records from the other hospital and said I had to be seen asap because I am being ignored. I have an appointment today with the new GI doctor. I am a bit alarmed as to how fast they wanted me to come in, however hopefully they will get to the bottom of this
Click to expand...
I hope the best for you.
 
heading to the new doctor now, I feel like I am flaring a bit the past few days extreme fatigue nausea and backed up
 

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