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Not all doctors are created equal, that's for sure! I hope the surgeon is more of a help. Every time I had had a meeting with a surgeon they wanted some kind of imaging before they did anything. I hope you are on the right track.
 
Kittykat, for what it's worth, I saw 2 different colorectal surgeons for my bleeding internal hemorrhoids (the first one was extremely dismissive of me so my GI sent me to a different one). I didn't have surgery but I did have my hemorrhoids banded. That was extremely uncomfortable and they just came back within 3 weeks anyway, so that's not something I'd recommend. The surgeon will most likely have a look at your hemorrhoid and then let you know what your options might be - banding, suppositories, leave it alone, etc. If it's just one small hemorrhoid then they may want to opt to do nothing, but it's probably a good idea to talk with them anyway. It's possible they'll agree that your bleeding isn't from the hemorrhoid after all, and that should give you more justification to go back to your GI and ask for further testing.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kittykat, it makes me sad that you're so young and already experiencing health issues. My problems started when I was 23 (now I'm 26), and I still feel like it's SO unfair that I'm so young and so sick. I understand what it's like to have people not believe you, and it's horrible. I hope you get answers soon.
 
AKgirl - I'm so sorry your meds seem to be causing anxiety. I was on some meds last year that can (and most definitely did) cause depression. I think it's something I have always had to some degree, but usually it's pretty mild and things are basically ok. The meds made things very much not OK. I told my doctor and I went straight off them and we tried something else. Fortunately there was something else that could be tried. Whether you need a different med or antianxiety meds or help coping with therapy like CBT you should definitely talk to your doctor asap and get help.

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

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

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

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

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

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

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

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

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

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

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

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

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



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



As a side note, I saw a spider in my house last night, but I was too afraid to kill it because I have a spider phobia. And now I have no idea where it is!! Ahhhh. You'd think my cats would help out but nope. And there's still a ton of snow where I live, so why are the spiders already appearing?! Now I feel like there are spiders all over me. :) haha!
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I am studying to be a pharmacist (smarter than a doctor when it comes to drugs). Doctors have more diagnostic/disease knowledge. It's four years at uni and then 1 year as an intern.
 
akgirl said:
Jabee, what you said about the endorphins totally makes sense! Thank you so much for your insight! There are some smart people on this forum. :) Now if some of you could just become doctors, that'd be great..... I've always been a worrier/over thinker, but I'd never really experienced the physical symptoms of anxiety. And they're scary! I have so much more empathy for people who struggle with anxiety every day. I now understand how debilitating it can be. My husband suggested that I try to get a prescription for Klonopin. Did it work well for you? I did some research on it, and I guess it helps some people with nausea too, which is one of my most debilitating symptoms. So maybe it'd kill two birds with one stone? I got some magnesium, because I've heard it can help with anxiety. I'm guessing I'm way past the point of it helping, but I figure it's worth a shot at this point. But I know I don't want to take too much, because I already have plenty of BMs as it is!

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

As a side note, I saw a spider in my house last night, but I was too afraid to kill it because I have a spider phobia. And now I have no idea where it is!! Ahhhh. You'd think my cats would help out but nope. And there's still a ton of snow where I live, so why are the spiders already appearing?! Now I feel like there are spiders all over me. :) haha!
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I use lorazepam (generic for Ativan) on a PRN basis for my anxiety. I used to be prescribed 1mg but I always cut them in half, so I got my doctor to prescribe the 0.5mg tablet. For me, 0.5mg usually works, but there has been a time or two, when I had to take 2 tablets. Klonopin, for me, makes me feel like a zombie. I took it when an ENT doctor prescribed it for vertigo (the lowest dose). I took it 1 time and tossed it out because I didn't like how it made me feel. It's pretty addictive, too, which bothered me. Ativan is the least addictive of the benzodiazepines. Benzos include Xanax, Valium, Klonopin, Ativan, Librium, etc. Ativan is usually used as anti-seizure medication because it has a short half-life whereas Klonopin has a longer half-life (takes longer to get out of your system). If you think you might need to take anxiety medication every day, I'd recommend talking to your doctor about an antidepressant because it's not a good idea to use the benzodiazepines every day. They have addictive qualities. Buspar is another anti-anxiety medication that doesn't cause addiction, but it takes up to 2 weeks to work - I'm hoping to ask my new psychiatrist about it when I see him for the first time next month.

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

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

Another excellent source of information about benzodiazepines is:

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

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

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

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

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

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


Best wishes,

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

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

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

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

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

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

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

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

I'm really nervous have my second opinion tomorrow at 9.40 I hope they don't brush me off as well x
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I have a little good update... my new consultant believes that I have the early onset of Crohns and has started me on Budenofolk steroids. I have to start off with 3 a day this month, then 2 next month and 1 a day on the third month then I have to go back and see the consultant again. I finally feel as though they have started treatment xx
 
Blu's Tale said:
I have a little good update... my new consultant believes that I have the early onset of Crohns and has started me on Budenofolk steroids. I have to start off with 3 a day this month, then 2 next month and 1 a day on the third month then I have to go back and see the consultant again. I finally feel as though they have started treatment xx
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That is great.
 
Oh wow, your new doctor sounds so much more helpful. That's great news Blu! I'm so happy for you. That must be such a relief to find someone who is ready to do something to help you get better.
 
Hello everyone!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am wondering when you last had an endoscopy. Excess stomach acid can cause severe inflammation in the duodenum, and that is where iron is absorbed. Since you are not very responsive to PPIs it's possible that the inflammation not only extends upward into your esophagus but also downward into your duodenum. How many different PPIs have you tried? And have you tried carafate or sucralfate? It is used for peptic ulcers but it might help. I've had Barrett's but with a different PPI (I take dexilant now) it has gotten much better and my esophagus looked better at my last scope.
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Had my most recent scope in December, not sure how far down they looked though, might have to check my chart for that info. I've tried Prilosec, Pantoloc and Nexium so far. Prilosec wasn't very effective at all, Pantoloc and Nexium are about equally effective, but Pantoloc gives me the WORST dry mouth.

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

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

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

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

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

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

Thank you guys for all your support while going through this. It has been a big help.
 
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 said:
:hallo3: cmack - why are you bent of ruining people's life? Get out of this forum. Such a looser. telling people to do more dagnostic tests. telling people you had bunch of surgeries. telling people not to believe the tests that doctors have done. I am a victim of this garbage called "cmack"
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You seem to be more like garbage than me. You have such a bad attitude that it stinks!
 
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OK, I'm disabled permanently that's so nice of you to pick on me. I have had every surgery that I have ever claimed and then some! What's the beef? Who could even make it up? It's all true!
 
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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.
Click to expand...

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
Click to expand...

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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