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Merry Christmas for those who celebrate it. Right now, the way my stomach has been acting, I wish I could delay going to my son's.
 
Well, I hope everyone's Christmas is going better than mine. I feel horrible. I woke up this morning around 2:30 and felt awful. I couldn't go back to sleep for hours, and I ended up downstairs in our guest room, which is where I sleep on my really bad days because it's closer to a bathroom, and I prefer to be alone in my misery. The whole day has been awful as well. I feel so bad that I've been crying all day, I've been in my pajamas all day, and I'm missing Christmas dinner with my family. It's just so frustrating, and I'm SOOOOOOO sick of being sick. There aren't enough O's in the world to emphasize that enough. I just don't understand why I have to go through this. And I don't even care that it's Christmas. I just care that I feel so horrible. Is everyone else having a good Christmas?

The doctor I've been seeing for around 9 months now is opening her own practice. I really hope that doesn't mean she's going to have less time to spend on me and my issues (we usually email every week), but I'm guessing it does. She told me to schedule an appointment with her in January once her new practice opens, and we can discuss where we go from here. Clearly what we're doing (low dose immunotherapy) isn't working, because it's been 9 months and I don't see any improvement. Whine, whine, whine. But I feel like I need to today.

Welcome, pinger_genguin! It sounds like you're all too familiar with trying to determine the difference between IBS and IBD. Sometimes I wonder if IBS is even a real thing, or if doctors just use it as a cop out when they aren't sure what's wrong with a person. "Oh, your colonoscopy came back fine, I guess you just have IBS." I understand how frustrating it is! You mentioned that you always had some stomach issues but that they've gotten worse in recent years. I'm the same way. I used to have occasional stomach issues, but I was still able to live my life normally. Now my stomach problems are so bad that they're literally debilitating. I had to quit my job and drop out of grad school, and now I just feel like I'm wasting my life. Anyway, I really hope you can get a diagnosis soon or at least find some way to manage your stomach problems.
 
woken w/d a couple times last night - not quite running a fever today

man would it be "funny" (but not) to spend another new year's eve in the ED with cdiff (that was how I spent the '14/'15 transition).
 
Wildmtn, I hope you were able to avoid the ER! I also hope you're doing a lot better today. You need a break from this already!
 
I stayed out the ED for the new year, but ended up there yesterday anyway :( - likely cdiff, but the D stopped and I was just passing mucus, plus a LOT of pain, which they think may be diverticulitis, but we opted to not do imagining (because, seriously, I think I'll glow with all the CTs of my belly!) so I'm on Flagyl now *and* a low-residue diet.

In the middle of all that, I also saw my Rheum, and we decided that Plaquenil isn't helping, so we stopped that, started Evoxac for saliva instead, and he gave me Tramadol for all the joint pain I've been having.

I've missed so much work that I'm freaking out they'll get mad (they haven't said anything negative yet though) and I'm also still waiting to hear anything back after my disability hearing. I'm not sure which is the "right" choice - trying to work, or focusing on disability.

Sorry for all the negativity!!

Hope everyone had wonderful holidays, and here is looking forward to a great 2017!!
 
It looks like my gastro consultant has referred me to the specialist gastro dieticians to follow up on my regular dieticians advice regarding tube feeding. I'm trying not to get my hopes up about them actually doing something, but I'm really hoping that means it is at least going to be considered!
I'm also going into my gastro consultant appointment armed with a sheet of questions and I've printed a few studies relating to POTS and gastroparesis off to back up my request for a gastric emptying test.
I've also printed out my resignation letter for work, I've decided it's time. They are going down the route to sack me anyway so at least if I resign it will be easier to get a job in the future. It means I will have to claim disability benefits and go through the awful assessment procedures, but it's the only way really.

How is everyone else getting on?
 
sarahfh said:
It looks like my gastro consultant has referred me to the specialist gastro dieticians to follow up on my regular dieticians advice regarding tube feeding. I'm trying not to get my hopes up about them actually doing something, but I'm really hoping that means it is at least going to be considered!
I'm also going into my gastro consultant appointment armed with a sheet of questions and I've printed a few studies relating to POTS and gastroparesis off to back up my request for a gastric emptying test.
I've also printed out my resignation letter for work, I've decided it's time. They are going down the route to sack me anyway so at least if I resign it will be easier to get a job in the future. It means I will have to claim disability benefits and go through the awful assessment procedures, but it's the only way really.

How is everyone else getting on?
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Wish you the best. Missed church because my stomach has been really bad.
 
Sarah, good luck! Hopefully things are moving in the right direction for you. I'm sorry that you have to quit your job, but it sounds like it's the best thing for you right now. Please keep us posted on how things go, if you're able to get tube feeding and the gastric emptying test.

As for me, I'm okay-ish. Guts-wise I'm pretty good, LDN is being good to me. I did eat a salad the other day that did NOT agree with me at all, so I've been a bit crampy the past couple days, but for the most part my guts have been very quiet and well-behaved. I'm dealing with some stressful family stuff right now (I fear my grandma is going to die soon). So emotionally I'm a bit of a mess, but physically I'm okay.

Ron, you said in another thread that you think you're flaring? Have you called your doctor? I seem to recall that you had to stop your Humira for a while because of your scalp surgery, correct? Has Humira been helping at all since you started taking it again?
 
Cat-a-Tonic said:
Sarah, good luck! Hopefully things are moving in the right direction for you. I'm sorry that you have to quit your job, but it sounds like it's the best thing for you right now. Please keep us posted on how things go, if you're able to get tube feeding and the gastric emptying test.

As for me, I'm okay-ish. Guts-wise I'm pretty good, LDN is being good to me. I did eat a salad the other day that did NOT agree with me at all, so I've been a bit crampy the past couple days, but for the most part my guts have been very quiet and well-behaved. I'm dealing with some stressful family stuff right now (I fear my grandma is going to die soon). So emotionally I'm a bit of a mess, but physically I'm okay.

Ron, you said in another thread that you think you're flaring? Have you called your doctor? I seem to recall that you had to stop your Humira for a while because of your scalp surgery, correct? Has Humira been helping at all since you started taking it again?
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Not that I have noticed , Cat. I did my second dose last Wednesday since going back on it.
 
Well, yesterday sucked. And today sucks too. I've been feeling horrible. Yesterday I didn't sleep well, I had 8 BMs, I had so much nausea, I couldn't really eat, and I was just miserable. I also had a doctor's appointment that was about an hour away that I had to go to. I should've canceled, honestly, because it was not good. When the lady was taking my vitals, she said my temperature was elevated and my blood pressure was really high. Then I saw my doctor, who I've been seeing for almost a year now, and I'm pretty sure that'll be my last appointment with her. We've been doing something called low dose immunotherapy, and it's clearly not working. All I want is to get better. I've been sick every day for three years now, and it's so hard. So I told my doctor that I don't think I want to continue doing that, because it's not working and I think I need medication or something. She then told me that she's pretty sure I'm depressed and that's why I'm sick. Ugh. I am depressed! But I'm depressed because I'm sick, I'm not sick because I'm depressed. I started getting sick a few weeks after my mom died, and I get that some people might think I'm sick because of that. But it's been three years. And with IBD (and a lot of other health issues and diseases), there's often a stressful trigger that makes your disease flare up. So she prescribed me an antidepressant. I've already tried multiple, and I've seen counselors, but whatever. It's just so frustrating to be so sick and not have anyone believe me. I literally feel like I'm dying sometimes.

Cat, I have to tell you something kind of crazy. Even though my doctor apparently just thinks I'm depressed now, she was open to the idea of trying other medications. So we started discussing some options, and one of the ones I mentioned was LDN. To my surprise, she was already familiar with LDN and said many people have success with it and we should try it. So she sent the prescription to a compounding pharmacy and it should be ready in a couple days. I honestly don't have high hopes for it at this point, because I've tried SO many different things, and nothing has even given me the slightest bit of relief. But I'm still hoping for a miracle.

How's everyone else doing?
 
Akgirl, LDN is very promising and I hope you do really well on it! I've been on it for about a month now, and I can tell I'm doing better. It's got a very low risk of side effects, too. You will probably not sleep very well for the first 1-2 weeks or so, but after that your body should adjust to it and you'll sleep fine after that - and that's the only real side effect that most people experience. One important thing I was told with LDN is to not take any opioid pain medicines (tylenol is fine but basically no prescription pain meds). I'm not sure exactly what would happen, I was just told that I'd get "really sick" if I tried taking any opioid pain meds while on LDN.

It does take anywhere from a few weeks to a few months to fully kick in, so don't be disappointed if you don't feel any different at first. Give it time to work.

I actually saw my GP yesterday - it was my GI who had prescribed me LDN so I hadn't talked to my GP since being on it. And he was asking me all sorts of questions, how I'm doing on it and so forth. He said he's going to start prescribing it to some of his other IBD/IBS patients because of how promising it is and because there is such a low risk of mild side effects. So even though my GI had never heard of LDN, he was okay with prescribing it to me, and my GP has heard of it and is prescribing it as well. It seems like LDN is really starting to become noticed!

And as for grief triggering a flare - it's definitely possible, that is what I believe set off my flare that started in July. My grandpa died in May, and we put my grandma into a memory care facility in June (she's got some type of dementia, probably Alzheimer's). Obviously I was grieving for my grandpa, and the situation with my grandma was super stressful - she did not want to go into a facility, she felt like we were putting her in prison, she was very mad at us and would threaten all sorts of horrible things (she wished we were all dead, she would threaten suicide or threaten to burn down her facility, etc - she would regularly ask me if I had a match or a razor blade). So in July I started flaring and I'm sure it was a result of my grandpa dying and my grandma's situation causing so much stress. I've been clawing my way out of that flare ever since. I'm finally to the point where I'm feeling pretty well and recently I've been able to exercise again and I am feeling like a mostly-functional human instead of a sickness zombie. So, for what it's worth, I think my flare was also set off by grief, and I think LDN has been the turning point for me starting to feel actually well again. I hope LDN also gets you out of your grief flare! Good luck with it and please keep me posted on how you're doing.
 
akgirl said:
Well, yesterday sucked. And today sucks too. I've been feeling horrible. Yesterday I didn't sleep well, I had 8 BMs, I had so much nausea, I couldn't really eat, and I was just miserable. I also had a doctor's appointment that was about an hour away that I had to go to. I should've canceled, honestly, because it was not good. When the lady was taking my vitals, she said my temperature was elevated and my blood pressure was really high. Then I saw my doctor, who I've been seeing for almost a year now, and I'm pretty sure that'll be my last appointment with her. We've been doing something called low dose immunotherapy, and it's clearly not working. All I want is to get better. I've been sick every day for three years now, and it's so hard. So I told my doctor that I don't think I want to continue doing that, because it's not working and I think I need medication or something. She then told me that she's pretty sure I'm depressed and that's why I'm sick. Ugh. I am depressed! But I'm depressed because I'm sick, I'm not sick because I'm depressed. I started getting sick a few weeks after my mom died, and I get that some people might think I'm sick because of that. But it's been three years. And with IBD (and a lot of other health issues and diseases), there's often a stressful trigger that makes your disease flare up. So she prescribed me an antidepressant. I've already tried multiple, and I've seen counselors, but whatever. It's just so frustrating to be so sick and not have anyone believe me. I literally feel like I'm dying sometimes.

Cat, I have to tell you something kind of crazy. Even though my doctor apparently just thinks I'm depressed now, she was open to the idea of trying other medications. So we started discussing some options, and one of the ones I mentioned was LDN. To my surprise, she was already familiar with LDN and said many people have success with it and we should try it. So she sent the prescription to a compounding pharmacy and it should be ready in a couple days. I honestly don't have high hopes for it at this point, because I've tried SO many different things, and nothing has even given me the slightest bit of relief. But I'm still hoping for a miracle.

How's everyone else doing?
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Hope the best for you.
 
I should add that LDN might be put to the test soon in terms of grief - my grandma is better mood-wise, they switched up her meds and she no longer threatens suicide or anything like that, she's usually pretty sweet and nice these days. But, I think she's dying. She's had 2 cardiac arrests within the last 2 months. In mid-December, she was found with no pulse and not breathing, and she was grey. She has a "do not resuscitate" order, so they couldn't do CPR on her. The ambulance was called, and the first EMT to arrive literally just got in her face and yelled at her to wake up - and somehow, she did! I don't know how that happened, it sounds so ridiculous, but it's true. So anyway, that was her first close call - something very similar happened this past Monday, except she was only gone for about 45 seconds this time before they got her back (I don't know if they yelled at her this time also?). So to have repeated cardiac arrests and a DNR order, I know this means she's not going to be around much longer. I don't know how I'm going to deal with it when she goes, I just lost my grandpa and I don't think I'm going to deal very well with losing my grandma too. I think I'll need every bit of LDN's magic to keep me from flaring again.
 
Thanks, Ron!

And thanks for the info, Cat! I'm really hoping that LDN will be *the* thing that'll make me better, but I'm not getting my hopes up. I know with my luck, it probably won't work. Hopefully I won't have any side effects other than the sleep issues at first. I seem to have side effects with everything, so I get anxiety whenever I try something new. I'm so sorry to hear about your grandma. Stress and grief definitely do not help with our illnesses. I really hope LDN can help you and prevent a grief flare. It's so crazy that your grandma just kind of revives herself! I don't even know how that's possible. Hopefully she won't have any more issues any time soon. But even just knowing that it's possible must be very stressful for you.
 
My grandma reviving herself - yeah, I'd never heard of such a thing before, either, until it happened with my grandma. It really is very odd. My grandpa had a cardiac arrest a little over 10 years ago, and it took CPR and 7 shocks with a defibrillator to bring him back. I had never heard of someone coming back from a cardiac arrest without having at least CPR performed if not defibrillation. The nurses checked her pulse with a stethoscope the first time it happened, and she was definitely pulseless. And her waking up in response to an EMT yelling at her to do so? It's like something out of a bad movie! It'd be funny if it didn't hit quite so close to home, you know? It's just really weird. I'm glad she came back, but obviously she's not well and I'm sort of bracing myself for the inevitable, because clearly she's not going to come back every time this happens - she's beat the odds twice already, I don't even know what the odds are of coming back on your own from two cardiac arrests but those odds cannot be good. Maybe I should buy her a lottery ticket!

I don't think there are many other side effects even associated with LDN, so hopefully you'll also just have some trouble sleeping and/or a few vivid dreams and that's it. I only had one vivid dream - I dreamt that wasps were everywhere, all over every surface and even on me, so I jumped into a swimming pool to try to get away from them, but that was no good either as the pool was full of dead wasps. Then I woke up. :p As far as side effects go, one wasp dream and a couple weeks of not sleeping very well, those are things I can totally deal with. I tend to get a lot of side effects too - whatever my GI put me on a couple months ago made my face break out into a rash, when I tried compazine it made me feel like I couldn't breathe (that was fairly terrifying), and when I tried hyoscyamine it made me very nauseous and vomity. Not to mention the pred that I'm still on and all the fun that's given me - my weight is currently higher than it has ever been before, I have moonface, I get wicked heartburn from pred, and it's making my hair fall out. Ugh.

I really do hope LDN does some good things for you. Even if it's not a miracle cure, that's not to say that it won't help in some ways. At the compounding pharmacy, they told me that LDN might help me in other, unexpected ways, rather than just solely helping my IBD. And I think that's true - I have bladder issues as well, and those issues have calmed down a lot since I've been on LDN. It's helped my IBD as well, of course. It really is a great med and I wish you lots of luck with it!
 
Hi
I'm new and not properly diagnosed yet either. I've had problems with pain and vomiting for ten years. It has massively improved through dietary changes and cutting out alcohol but my period still triggers some pain but it's massively better than it used to be. I take Humira for my Ank Spond so I guess that helps too. I recently went private to try again to get a diagnosis. An MRI shows scar tissue and narrowing of the terminal ileum which even my gastro thinks is most likely CD. I have no active inflammation though so I have to have further tests to get a firm diagnosis. I'm worried I'll never get absolute confirmation unless they operate to remove the stricture. I don't want surgery as I can live with the stricture right now. After ten years it would be good to put a name to this thing.

M
 
redmazzy said:
Hi
I'm new and not properly diagnosed yet either. I've had problems with pain and vomiting for ten years. It has massively improved through dietary changes and cutting out alcohol but my period still triggers some pain but it's massively better than it used to be. I take Humira for my Ank Spond so I guess that helps too. I recently went private to try again to get a diagnosis. An MRI shows scar tissue and narrowing of the terminal ileum which even my gastro thinks is most likely CD. I have no active inflammation though so I have to have further tests to get a firm diagnosis. I'm worried I'll never get absolute confirmation unless they operate to remove the stricture. I don't want surgery as I can live with the stricture right now. After ten years it would be good to put a name to this thing.

M
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Welcome and keep pushing until you get an answer.
 
Cat, that sounds like an interesting dream! I remember multiple dreams every night usually, so if they get even more vivid it might be interesting. I really hope LDN works for me. I want my life back. I've been in my pajamas for days, feeling horrible, and hardly eating. And crying, of course. Lots of crying. I cry every day, but I cry all the time on my really bad days. I'm just so exhausted and would do anything to feel better. Oh, and I have heard that LDN can help with additional problems! That's awesome that it's helping you in multiple ways. I've heard that it helps with depression too, which would be nice. But I don't see how I could be happy while still being so sick. I'll keep you posted on how it goes for me. The compounding pharmacy said it might be ready tomorrow.

I'm so glad I found this forum and am able to vent on here to people who understand. I'm sure my friends and family (and especially my husband) are so tired of hearing me complain. But they also don't get it. They can't. It makes me so sad to see everyone else living their lives normally, while I'm stuck at home, miserable, crying most of the time. It's still crazy to me that doctors can't fix us. There's so much technology and advancements these days, but for some reason we still have to just suffer. I've been sick for three years now. You'd think that'd be a sign that something is seriously wrong.

Sorry, that was a lot of venting, but it's just one of those days.
 
redmazzy said:
Hi

I'm new and not properly diagnosed yet either. I've had problems with pain and vomiting for ten years. It has massively improved through dietary changes and cutting out alcohol but my period still triggers some pain but it's massively better than it used to be. I take Humira for my Ank Spond so I guess that helps too. I recently went private to try again to get a diagnosis. An MRI shows scar tissue and narrowing of the terminal ileum which even my gastro thinks is most likely CD. I have no active inflammation though so I have to have further tests to get a firm diagnosis. I'm worried I'll never get absolute confirmation unless they operate to remove the stricture. I don't want surgery as I can live with the stricture right now. After ten years it would be good to put a name to this thing.



M
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Bowel inflammation is very common with ank spond. It's is only clinically overt inflammatory bowel disease in 10%. Don't be discouraged if you don't get a full IBD diagnosis. It is related to ank spond!
 
I take Humira for my Ank Spond so I guess that helps too. I recently went private to try again to get a diagnosis. An MRI shows scar tissue and narrowing of the terminal ileum which even my gastro thinks is most likely CD. I have no active inflammation though so I have to have further tests to get a firm diagnosis. I'm worried I'll never get absolute confirmation unless they operate to remove the stricture. I don't want surgery as I can live with the stricture right now. After ten years it would be good to put a name to this thing.
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Both my daughters have Ankylosing Spondylitis but only my younger one has IBD. It is true that "subclinical bowel inflammation" is very common with AS - something like 60% of people with AS have bowel inflammation without having symptoms.

However, your situation sounds much worse than microscopic inflammation and you have significant symptoms. A stricture means there has active inflammation for years. That sounds like an overt or "real" IBD diagnosis.

Have you had a pillcam done to look at the small bowel? It may be that active inflammation is hiding in there. Alternatively, even chronic inflammation in your terminal ileum should be enough for an IBD diagnosis - have you had a scope recently?

It's possible that there is not a lot of active inflammation because you are on Humira and of course that treats Crohn's too. So your GI should keep that in mind when diagnosing you.

If it is scar tissue and there is no active inflammation, a surgery might really help your symptoms. A balloon dilation might also be an option. You may also need additional medication like 6MP or Methotrexate to keep the Crohn's under control.

I hope you are able to get a firm diagnosis quickly!
 
Maya142 I had a battery of tests ten years ago, colonoscopy, barium follow through, MRI's, CT scans, gastroscopy, finally a pill cam. All came back normal. I have recently accessed my medical notes and they did see a mass or unidentifiable 'something' on the terminal illum but it can't of been anything they felt unusual as I don't remember them telling me that. The only other thing they noted was my bowel loops being more angular than they should be. It was a case of we think it's IBD, probably some atypical type of Crohn's but we can't give you a diagnosis because we can't find proof of the inflammation. So they wanted to just see how it goes. I remember bursting into tears when they delivered this news because I'd spent a year having various painful and invasive tests, suffering alone in my flat during flare ups, bouts of extreme pain and not knowing how to manage them or what I should do. I had two in one week once which left me feeling depressed and distressed by the pain. It was literally like someone coming and stabbing me in the stomach for 24 hours or more. I can understand how with extreme pain you could get PTSD!

Eventually my consultant said come into A&E when you are in pain, I don't know why I didn't before, I just felt I had to put up with it. I did when I had severe episodes where I was vomiting and unable to tolerate the pain. It took 3 visits before they read my notes properly (I always went to my hospital where I get all my treatment, apparently it's quicker to take your medical history again than go and look you up on the computer!) and realised what I needed as a first line of treatment was morphine, that's the only thing that worked.

Each time I went for a check up at the gastro they'd muse over my conundrum, I'd have a different registra who I'd never met before, but they never offer more tests or even tests when I was having a flare, in fact my consultant said there is no point in doing a test during a flare. I got discharged eventually because I think I was grumpy and they just discharged me.

Over the years I have worked with a nutritionist and done loads of work myself researching and looking after myself. I worked out what triggers things, food wise. This is helped massively, to the point where I'd say it's practically in remission. However, this makes it worse in some ways in terms of getting a diagnosis! I'm not getting worse, in a cash strapped NHS it's not an urgent case. Eventually my nutritionist was flummoxed, her tests on stool etc came back normal and she felt it wasn't what she would expect in IBD. She said I needed to go back and get a diagnosis so I tried again, after ten years of no monitoring.

I tried St Marks hospital this time because they specialise in bowel disease, I chose their head of IBD clinic as my consultant, but never got to see her, again, seeing registras for ten minutes to cover ten years of medical issues. Last time I waited four hours to be seen and left feeling like it was just going no where.

Luckily my boyfriends health insurance would cover me to see the same consultant privately. That's when I started to get answers, I got to see her directly not a registra, I got more time. She did an MRI and they saw the stricture. I've had a CTE scan, but as they can't see any active inflammation they had to consider all possible causes which included; endometriosis, diverticulitis, CD, some sort of appendix problem. Next I'm having a colonoscopy, but I have to have that under GA as last time I had one it was so painful I was screaming. I hope the insurance will cover this.

Obviously it's great my problems are getting better, and the stricture only causes me occasional problems, like if I drink too much alcohol it seems to inflame things to the point it narrows the bowel and then when I eat I get pain and vomit. Also when I travel I find the different bacteria in food and water can trigger a big flare up. This is when I really need a diagnosis because last time this happened I was ill for four days, I could not eat and was vomiting, I went to A&E and they assumed I had food poisoning. It's much easier to be able to say I have xxxx than explain the complex backstory/medical history.

I don't really want to have surgery unless I need it, my consultant said I could consider it and that would give me a firm diagnosis as they would analyse the bowel taken out. If I want to rule out endo I would have to have a laparoscopy. I've had many ultra scans and gynies I've seen have said they think it's not endo, but the only way to tell is to have the laparoscopy. I didn't want another invasive test so I turned it down, I think they can leave bowel adhesions can't they? I really don't think it is endo.

I'm really hoping the colonoscopy can give me the final answer.
 
redmazzy said:
Maya142 I had a battery of tests ten years ago, colonoscopy, barium follow through, MRI's, CT scans, gastroscopy, finally a pill cam. All came back normal. I have recently accessed my medical notes and they did see a mass or unidentifiable 'something' on the terminal illum but it can't of been anything they felt unusual as I don't remember them telling me that. The only other thing they noted was my bowel loops being more angular than they should be. It was a case of we think it's IBD, probably some atypical type of Crohn's but we can't give you a diagnosis because we can't find proof of the inflammation. So they wanted to just see how it goes. I remember bursting into tears when they delivered this news because I'd spent a year having various painful and invasive tests, suffering alone in my flat during flare ups, bouts of extreme pain and not knowing how to manage them or what I should do. I had two in one week once which left me feeling depressed and distressed by the pain. It was literally like someone coming and stabbing me in the stomach for 24 hours or more. I can understand how with extreme pain you could get PTSD!

Eventually my consultant said come into A&E when you are in pain, I don't know why I didn't before, I just felt I had to put up with it. I did when I had severe episodes where I was vomiting and unable to tolerate the pain. It took 3 visits before they read my notes properly (I always went to my hospital where I get all my treatment, apparently it's quicker to take your medical history again than go and look you up on the computer!) and realised what I needed as a first line of treatment was morphine, that's the only thing that worked.

Each time I went for a check up at the gastro they'd muse over my conundrum, I'd have a different registra who I'd never met before, but they never offer more tests or even tests when I was having a flare, in fact my consultant said there is no point in doing a test during a flare. I got discharged eventually because I think I was grumpy and they just discharged me.

Over the years I have worked with a nutritionist and done loads of work myself researching and looking after myself. I worked out what triggers things, food wise. This is helped massively, to the point where I'd say it's practically in remission. However, this makes it worse in some ways in terms of getting a diagnosis! I'm not getting worse, in a cash strapped NHS it's not an urgent case. Eventually my nutritionist was flummoxed, her tests on stool etc came back normal and she felt it wasn't what she would expect in IBD. She said I needed to go back and get a diagnosis so I tried again, after ten years of no monitoring.

I tried St Marks hospital this time because they specialise in bowel disease, I chose their head of IBD clinic as my consultant, but never got to see her, again, seeing registras for ten minutes to cover ten years of medical issues. Last time I waited four hours to be seen and left feeling like it was just going no where.

Luckily my boyfriends health insurance would cover me to see the same consultant privately. That's when I started to get answers, I got to see her directly not a registra, I got more time. She did an MRI and they saw the stricture. I've had a CTE scan, but as they can't see any active inflammation they had to consider all possible causes which included; endometriosis, diverticulitis, CD, some sort of appendix problem. Next I'm having a colonoscopy, but I have to have that under GA as last time I had one it was so painful I was screaming. I hope the insurance will cover this.

Obviously it's great my problems are getting better, and the stricture only causes me occasional problems, like if I drink too much alcohol it seems to inflame things to the point it narrows the bowel and then when I eat I get pain and vomit. Also when I travel I find the different bacteria in food and water can trigger a big flare up. This is when I really need a diagnosis because last time this happened I was ill for four days, I could not eat and was vomiting, I went to A&E and they assumed I had food poisoning. It's much easier to be able to say I have xxxx than explain the complex backstory/medical history.

I don't really want to have surgery unless I need it, my consultant said I could consider it and that would give me a firm diagnosis as they would analyse the bowel taken out. If I want to rule out endo I would have to have a laparoscopy. I've had many ultra scans and gynies I've seen have said they think it's not endo, but the only way to tell is to have the laparoscopy. I didn't want another invasive test so I turned it down, I think they can leave bowel adhesions can't they? I really don't think it is endo.

I'm really hoping the colonoscopy can give me the final answer.
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I hope it gives you answers
 
Hopefully biopsies will show chronic changes that are enough to diagnose you with Crohn's. Are they able to reach the stricture to biopsy it?

In terms of symptom relief, when my daughter was thought to have a stricture in her duodenum, they said a balloon dilation might work. They're quite successful, especially in the terminal ileum, and it may really improve your symptoms. It probably wouldn't prevent surgery forever, but it might for several years.

I don't know the UK system well, so I can't really advise there, but I hope you are able to get some answers soon and that your colonoscopy goes well!
 
Akgirl, for what it's worth, I also cry every day when I'm flaring. I read somewhere that changes in the gut can affect how serotonin is received by the brain - some brain-gut connection that isn't fully understood yet. In a nutshell, depression is a legit flare symptom - it's not just that you're sad because you're so ill, it's that there are changes happening in your body due to the inflammation and that's causing the depression. I don't know if that helps, but I think it does help me to know that it's not like a personal failure or whatever. It's another symptom of this super fun illness.

The good news is, that when things get under control, the depression tends to go away. I think the last time I cried was when I went to pick up my LDN prescription for the first time, and those were happy tears (I had fought for months and basically begged my GI repeatedly for LDN, and he finally said yes and wrote the script, so when I had it in my hand I just turned into a weepy mess because I was so happy that it was finally happening). Presuming LDN gets you feeling better, the crying should happen less and less. I hope that's the case for you anyway.

Did you get to pick up your LDN today? I was told to take mine at bedtime, so hopefully tonight you'll get to start it. Good luck!
 
Cat-a-Tonic said:
One important thing I was told with LDN is to not take any opioid pain medicines (tylenol is fine but basically no prescription pain meds). I'm not sure exactly what would happen, I was just told that I'd get "really sick" if I tried taking any opioid pain meds while on LDN.
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The reason for this is that naltrexone is an opioid blocker which means that it will not allow the opioids to pass thru your system. Any pain medication you take will basically be poison to your body since it has nowhere to go to metabolize. You might want to check with your doctor if you take Imodium, too. It works on the opiate receptors, as well.
 
Cat-a-Tonic said:
Akgirl, for what it's worth, I also cry every day when I'm flaring. I read somewhere that changes in the gut can affect how serotonin is received by the brain - some brain-gut connection that isn't fully understood yet. In a nutshell, depression is a legit flare symptom - it's not just that you're sad because you're so ill, it's that there are changes happening in your body due to the inflammation and that's causing the depression. I don't know if that helps, but I think it does help me to know that it's not like a personal failure or whatever. It's another symptom of this super fun illness.

The good news is, that when things get under control, the depression tends to go away. I think the last time I cried was when I went to pick up my LDN prescription for the first time, and those were happy tears (I had fought for months and basically begged my GI repeatedly for LDN, and he finally said yes and wrote the script, so when I had it in my hand I just turned into a weepy mess because I was so happy that it was finally happening). Presuming LDN gets you feeling better, the crying should happen less and less. I hope that's the case for you anyway.

Did you get to pick up your LDN today? I was told to take mine at bedtime, so hopefully tonight you'll get to start it. Good luck!
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I also cry sometimes when flaring.
 
Cat-a-Tonic said:
I should add that LDN might be put to the test soon in terms of grief - my grandma is better mood-wise, they switched up her meds and she no longer threatens suicide or anything like that, she's usually pretty sweet and nice these days. But, I think she's dying. She's had 2 cardiac arrests within the last 2 months. In mid-December, she was found with no pulse and not breathing, and she was grey. She has a "do not resuscitate" order, so they couldn't do CPR on her. The ambulance was called, and the first EMT to arrive literally just got in her face and yelled at her to wake up - and somehow, she did! I don't know how that happened, it sounds so ridiculous, but it's true. So anyway, that was her first close call - something very similar happened this past Monday, except she was only gone for about 45 seconds this time before they got her back (I don't know if they yelled at her this time also?). So to have repeated cardiac arrests and a DNR order, I know this means she's not going to be around much longer. I don't know how I'm going to deal with it when she goes, I just lost my grandpa and I don't think I'm going to deal very well with losing my grandma too. I think I'll need every bit of LDN's magic to keep me from flaring again.
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I'm sorry to hear about your grandmother. :(

I used to be a CNA and I remember learning about Cheyne-Stokes respiration which happens when people are at the end of life. It's much like sleep apnea - the body forgets to breathe. It's very common in people with congestive heart failure - a disorder of those at the end of life.
 
Thanks, MissLeopard. I didn't know the name for it or the technical aspects, but I guessed it meant that my grandma is dying - it sounds like I was correct. I'm going to go visit her tomorrow and as often as I can while she's still here. That's all I can do. I have some gifts for her - she kept saying how beautiful a scarf was that I wore at my last visit, so I got her one too as it wasn't expensive. And she talked about how she wanted cole slaw, they either don't serve it in her facility or she doesn't remember it if they do (dementia sucks). So I'll bring her a pretty scarf and some cole slaw tomorrow. Hopefully that will make her happy.

As for LDN and imodium, my GP went through my meds list at my appointment and he didn't say anything about not taking imodium. I think I will avoid it though just to be safe. I see my GI at the end of this month, so I can ask him about it then. Fortunately, I haven't needed imodium lately anyway - my stools have been formed and pretty regular lately (2-4 formed bowel movements a day and even less if I forget to take my psyllium, it's weird but I actually get a bit constipated these days without fiber!). Knock on wood, I haven't had diarrhea lately. I'm finally really getting out of the flare and hopefully headed for remission.
 
Cat, my dad picked up my LDN for me, so it looks like I will be trying it tonight. I haven't left my house for days, because I've been feeling so awful, so I'm thankful he was willing to get it for me. I really hope LDN helps me. I don't know how much more of this I can take, especially because I've had a really rough week. I've hardly eaten for the past four days, but somehow I've pooped 4 times today. And I pooped 8 on Tuesday. And a couple yesterday. It doesn't make any sense to me. I've already lost about 5 pounds over the past 4 days. It's not that significant, and I've actually been about 10-15 pounds lighter (I'm about 120 pounds now), but I can still notice it. And I feel weak, and I know I should try to force myself to eat more, but it's so hard.

Thank you for explaining that stuff about depression. That actually helped a lot and makes a lot of sense. I never dealt with depression before all this, so it's kind of new to me. But I definitely feel more sad and hopeless on my really bad days.

Does anyone else's stomach throb sometimes? Like you can feel a strong heartbeat in your stomach. Mine's been doing that a lot lately. But my regular heartbeat seems to be stronger than usual too. When I went to the doctor the other day, the lady taking my vitals said my blood pressure was really high (not sure how high), so I'm guessing it's related to that. Poor body. :(
 
Ugh I just read online that LDN can make candida/yeast overgrowth symptoms worse at first. I might have that. I took antifungals a while back, and felt horrible for days, until I stopped taking them. And I guess when that happens it usually means the yeast are dying off. Now I'm scared!
 
Akgirl, I didn't know that about LDN and yeast overgrowth, but that totally makes sense. I've been prone to yeast overgrowth myself lately. I figured it was just due to pred, because I know that can throw the body's yeast production out of whack. It's probably a double whammy for me, being on pred and LDN at the same time! Fortunately I'm tapering off of pred, down to 7 mg now and going to taper down to 6 mg in a couple days.

I wouldn't worry too much though. Me being on both pred and LDN, I've only had one yeast infection so far that required treatment, and that went away with one OTC treatment, so it hasn't been too bad. I think you'll probably be okay in that regard.
 
Well I started LDN last night, so I guess we'll see how it goes. I barely slept last night. I sometimes have trouble falling asleep, but this was worse than usual, so I'm guessing it was the LDN already. I got the liquid version, because I can't swallow big pills, and it tastes horrible! It made me so nauseous after taking it. I guess I was expecting it to have some type of flavor added but nope. I think I need to either take a drink of juice right after taking it, or maybe even mix it with juice and take it that way. I looked online, and that seems to be okay to do, but I'm always afraid to do stuff like that without getting official approval from a pharmacist.

Still crappy today. How's everyone else doing?
 
Akgirl, maybe call the compounding pharmacy and ask if it's okay to put the liquid into a glass of water and drink it that way. I don't know the answer, I take capsules, and they don't have any taste. I would imagine taking it with water is fine, but probably best to call the pharmacy and ask just to be sure.

I'm a little sad today. Just got back from visiting my grandma, and with her failing health, I'm never sure if that was my last time seeing her. Her dementia seems to be getting worse, she can't remember anything from one second to the next and she's mis-remembering things too (she thinks that she and my grandpa were in the memory care unit together and that the staff kept them apart and that my grandpa then died there - but my grandparents were living together in a condo when he died, they were never separated and he was never in her current facility). At least she kept breathing the whole time I was there, that's a plus. The whole drive home, a rainbow followed me, even though it hadn't rained. That was comforting. But I'm still feeling sad and drained.
 
Cat, I'm so sorry. That sounds stressful and so draining. Even though I'm sure it's hard, I'm glad you're still spending time with your grandma. Sometimes in those situations, it's easier to just ignore it and try to distract yourself, but I think it's good that you're seeing her. I'm sure she appreciates it too. Hopefully LDN can keep your tummy troubles under control, because I know stress can make things worse.
 
Cat-a-Tonic said:
Akgirl, maybe call the compounding pharmacy and ask if it's okay to put the liquid into a glass of water and drink it that way. I don't know the answer, I take capsules, and they don't have any taste. I would imagine taking it with water is fine, but probably best to call the pharmacy and ask just to be sure.

I'm a little sad today. Just got back from visiting my grandma, and with her failing health, I'm never sure if that was my last time seeing her. Her dementia seems to be getting worse, she can't remember anything from one second to the next and she's mis-remembering things too (she thinks that she and my grandpa were in the memory care unit together and that the staff kept them apart and that my grandpa then died there - but my grandparents were living together in a condo when he died, they were never separated and he was never in her current facility). At least she kept breathing the whole time I was there, that's a plus. The whole drive home, a rainbow followed me, even though it hadn't rained. That was comforting. But I'm still feeling sad and drained.
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I know exactly what you mean - my grandfather is in the late stages of Alzheimer's. Oddly enough, he's lasted longer than we thought he would. Last February, we celebrated his 84th birthday but it didn't really feel like a celebration - more like going through the motions. He didn't know what was going on and I know both my mom and I remarked to each other at least once that he probably wouldn't be around for his 85th. Here we are, almost February, and he's still alive. In fact, he's on a new medication and my grandmother has been doing much better so things are better and calmer at home. You'd be surprised how many environmental disturbances can make it seem like the Alzheimer's is progressing when, in actually, it is other things. He's getting worse with ADLs - especially personal hygiene - but he's able to communicate a little bit better, with a lot of encouragement.

One thing that really helped me was learning more and more about dementia as a whole. I work in the aging community, so it can apply to both personal and professional circumstances. The most helpful documentary was about Glen Campbell - it's called, "I'll Be Me." It's on Netflix and Amazon and really helps you understand the progression of the disease and how it affects the individual and the people around them. He had a beautiful song in the documentary called "I'm Not Gonna Miss You." It still brings tears to my eyes.

https://www.youtube.com/watch?v=U8TsAh-zYFI

I think you're doing the right thing with your grandmother - treasure each and every moment you share together and remember who she was but also treasure who she is now. There are difficulties, especially when the disease changes their personality, but it's important to remind yourself that it cannot be controlled. The frontal lobe is damaged and the "primal brain" is what's left - the amygdala. It can cause people to do crazy things or even lash out because the filter is no longer there. Your grandmother sounds like a very special lady and, though I know you aren't religious, I will keep both of you and your family in my thoughts and prayers.
 
ronroush7 said:
My father has Alzheimer's and doesn't say much.
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Unfortunately, the communication and language center of the brain is often destroyed first. I learned a lot of information about dementia when I did my internship in 2015 at a memory care ALF and there was a lot I didn't know. The brain looks like a sieve or Swiss cheese in the later stages. Keep talking to him - chances are he hears what you are saying and understands somewhat, but he has trouble communicating his wants and needs. Be patient and understanding - he is much like a child who hasn't learned to talk.

https://www.alz.org/care/dementia-communication-tips.asp
 
Akgirl, how is LDN going? Are you feeling any better? Your sleep is probably still disrupted at this point, it took me a solid 2 weeks to adjust to LDN when I first started it at 2 mg, and then when they moved me up to 4.5 mg, it took me another 2 weeks to adjust to that dose! I'm now adjusted to it and sleeping well again, so don't get discouraged.

MissLeopard, thanks for the info, and I'm sorry to hear that you're in a similar situation with your grandfather. I know how sad and stressful it is, I'm sorry. Before my grandpa died, he and my grandma were living in a condo together and not getting any outside assistance. My grandma was declining mentally for years, and my grandpa was declining physically for years, so they both sort of took care of each other. Together they kind of equalled one complete person. But when my grandpa died, of course everything fell apart for my grandma, and that's when we had to put her in a memory care facility. We didn't fully realize how far she had declined until my grandpa died - then we realized, she wasn't able to do a lot of everyday tasks anymore. She couldn't shower on her own, she couldn't do dishes, laundry, nor cleaning, so the condo smelled awful. She's also a hoarder, and was hoarding (and eating!) expired and rotting food. The worst was when she went grocery shopping (she was still driving up until we put her into the facility, that was scary!) and she forgot her groceries in the trunk of her car for several days, and this was in June so it was very hot weather. Needless to say, everything was rancid and only things like potato chips were salvageable, but she kept insisting that everything was still "fine" and edible. Um, no. So I'm really happy that she's now in a facility where she's fed non-rancid meals and is given help with things like showering. And of course she's no longer driving! We even bought her car, it's an older car but had really low miles on it, so there's no way she can drive now as they don't let her out of her unit and she has no vehicle. (She has tried to walk away from her unit at least twice, both times staff members followed her and brought her back.) So yeah, it's an improvement. I still worry about her because I know she doesn't have a lot of time left, but at least I no longer have to worry about her getting into a car accident or giving herself food poisoning or living in hoarded filth. (She still hoards what she can - every little thing that goes into her room, like plastic bags, gets saved and hoarded, so I'm very careful about what things I bring her.)

Edited to add: My grandma is indeed a special lady. She's always the one who would take me school clothes shopping when I was a kid. And she taught me how to sew, which is something that I'm forever grateful for. And she did a lot of things for me that I feel like I can never repay - stuff like, when I was a little girl, I had something like 30 "my little pony" toys. I brought them all to my grandma's house and I slept over, and when I woke up, all the ponies were lined up on the kitchen counter, and each one had a new outfit. My grandma had apparently stayed up at least half the night, if not all night, hand-sewing skirts and hats and vests for every single pony toy. It was incredible. I have a lot of lovely memories like that. She always went over the top for me. When I was about 5, we baked so many xmas cookies that we completely filled the large dining room table top with cookies - I have a photo of that and I treasure that memory. She did so much stuff like that for me, I feel like it's the very least I can do to go visit her as often as I can and bring her little gifts and talk with her and just keep her company. She would do the same for me and then some.
 
Cat-a-Tonic said:
Edited to add: My grandma is indeed a special lady. She's always the one who would take me school clothes shopping when I was a kid. And she taught me how to sew, which is something that I'm forever grateful for. And she did a lot of things for me that I feel like I can never repay - stuff like, when I was a little girl, I had something like 30 "my little pony" toys. I brought them all to my grandma's house and I slept over, and when I woke up, all the ponies were lined up on the kitchen counter, and each one had a new outfit. My grandma had apparently stayed up at least half the night, if not all night, hand-sewing skirts and hats and vests for every single pony toy. It was incredible. I have a lot of lovely memories like that. She always went over the top for me. When I was about 5, we baked so many xmas cookies that we completely filled the large dining room table top with cookies - I have a photo of that and I treasure that memory. She did so much stuff like that for me, I feel like it's the very least I can do to go visit her as often as I can and bring her little gifts and talk with her and just keep her company. She would do the same for me and then some.
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You sound like you are connected to your grandmother the same way I am connected to my "Nana." I love and treasure her so much - we've always been very close. When I was working part-time and had more flexibility, we would often go to Sweet Tomatoes - our favorite restaurant - and spend quality time together. Now that I'm working full-time and getting ready to start grad school, that time is not the same. I go over to her house once a month if I'm lucky. The sad thing is that she lives right down the street now from where I live - it's literally a hop, skip, and jump away - but I'm so busy with work and she's so busy with doctor's appointments for both her and my grandfather that we just don't have time to catch up. :(

I absolutely love the closeness we share though. She and my mom taught me how to cross-stitch and I did those little embroidery kits as a child - I just recently started picking it back up and it is so much fun to see the finished product. She loved to make Halloween costumes and school project costumes for my sister and I. When I was in 2nd grade, I had to do a report on someone very important in early American history. I did the report on Betsy Ross and my Nana made my costume and a replica of the first flag. I still have the picture! She also did small special things like getting my sister and I matching leotards, tights, leg warmers, and ballet slippers so we could have something fun to wear during Mousercise. We also loved playing over at her house because she bought us both the Dixie's Diner set with all the characters and that cute juke box that went along with it. It was so much fun - my sister and I would play with it for hours! She's 82 (almost 83 in March) and I'm 33 (34 in July), but I still love being with her. :)
 
My grandma made me costumes as well! When I was about 8, I announced that I wanted to be a unicorn for Halloween. She made me an amazing costume, it had a pink mane and tail. That was the same year that she made a really cool stegosaurus costume for my little brother. She also had this special pink dress - it was a very small size and she had gained weight and couldn't fit in it any longer, but also couldn't bear to throw it away. When I was in 4th grade, she took that special pink dress and made me a princess dress out of it. It was almost too pretty to wear. And it was so meaningful because I know she loved that dress.

And OMG, Mousercize! I never had that but I remember wanting it wayyy back in the day. That so brings me back! I turned 37 in November so you and I aren't far off in age. And my grandma is 84 so also very close in age to your grandma. And yes, I'm very connected to my grandma too - she doesn't remember much these days, but when I tell her about all the lovely things she did for me when I was younger, like the xmas cookies and the pony outfits, it seems to make her happy. I wish she still remembered those things, but I guess now I have to do the remembering for both of us. Dementia really sucks. She can remember some things from the past, but her memory seems to end roughly around my early childhood. She remembers the house that she lived in when I was little, but they moved out of that house when I was maybe 6ish, and she doesn't remember the places that she and my grandpa lived after that. She doesn't remember a lot of my childhood and she's basically erased my brother from her memory. So sometimes I ask her about the things she does remember - when my dad was born, she and my grandpa lived in France for about a year because that's where my grandpa was stationed with the army. So sometimes I just ask her to tell me about France. It's a safe topic and something she still can remember.
 
I'm starting at a really low dose of LDN (0.5mg) because I know how sensitive my body is and how I seem to have side effects from everything. So I figured better safe than sorry. I'll probably increase my dose a little every week or two, depending on how I'm doing. Luckily it's really easy to change doses with the liquid. I have had a little bit of trouble sleeping but nothing too bad. I sometimes have trouble sleeping anyway. I'm sure I'll have more trouble once I start increasing the dose. I haven't seen any improvement yet, but I didn't really expect to at 0.5mg. I'm so discouraged at this point that I don't expect to see any improvement with anything anymore.

Awww you guys have some really special memories with your grandmas. Your memories made me smile, but just thinking about how hard dementia must be, made me sad. Try to hold onto the great memories!
 
Dementia is definitely hard. My grandma's ability to remember things varies from one day to the next. Sometimes she remembers that my grandpa is dead and she misses him, but other times she barely remembers him at all or gets confused and thinks that he was one of her sons. Sometimes she remembers my name and my relationship to her, but other times she can't remember my name nor how we're related (she still knows I'm her person, but the details are all gone). And her moods can be very bad - sometimes she threatens suicide or threatens to burn down her facility. Usually these days her mood is good, but sometimes she gets mad that we put her in "prison" (she's in a very good memory care facility, and for her own safety they don't let her out). She doesn't usually understand that she cannot live on her own. At times she has enough clarity to realize that she's not capable of living on her own and needs to be where she's at, but usually she lacks the comprehension of why she is where she is.

The weirdest parts of her dementia are that she thinks she's moving, and she doesn't recognize her own clothes anymore. Apparently the moving thing is very common, the staff at her facility said lots of their residents do this. My grandma will pack up all her stuff in the mistaken notion that she's moving. One time she told me she thought she was being moved to a storage closet and was going to have to sleep on a cot. Um, no. Lately, every time I visit her, her stuff is always packed up. It's sad and I don't know where that delusion even comes from. She's definitely not moving except maybe to a nursing home if she lives long enough for her dementia to get bad enough to warrant that. And her clothes, it's weird. She doesn't recognize her own clothes - they are a bit large for her, she's lost some weight, but they are her clothes that she's owned for years. She always tells me that an overweight lady who lived in her room previously left the clothes there. When we say that they look like her clothes, she concedes that she and the other lady must have shopped at the same stores, but still insists that they're not her clothes. So odd.

Anyway. I know this is all the illness, and not her. My sweet grandma is still in there and still pops out to say hello now and then. And I do cherish the wonderful memories and I try to continue to make good memories with her for as long as she's still here.

I'm glad that you're doing okay so far on LDN. Definitely do give it plenty more time to kick in, especially since you're starting at such a low dose. I started at 2 mg, and I did notice feeling better pretty quickly on that dose, but it was a very subtle shift in how I was feeling at first. Now that I'm up to 4.5 mg and have been on that dose for a little while, I'm definitely noticeably doing better. I can exercise again, which is huge for me, because I love fitness. I hadn't been to the gym regularly since before this flare hit, it was probably a good 6 months or so since I was able to exercise regularly. So that's definitely a measurable result, being able to go to the gym again! So, I hope you start seeing little subtle shifts towards feeling better as well.
 
Hugs for the grandmas!

akgirl - good luck with the LDN!

I had my barium swallow yesterday, and got some answers! So, the swallow was with a fairly "runny" form of the barium (I seem to recall it being a bit thicker last time). This time, they found that even this runnier stuff was getting "stuck" (the official term I think is "stasis") around the height of aortic arch, and again a bit lower down. Not because of a stricture or anything, just because of dysmotility. They also watched for reflux, but I didn't have any - the barium just sat happily in my stomach, even laying flat, and on my right side. They said though, that the food that gets stuck in the esophagus can ferment there and cause reflux-like issues. Ick. The good news is my s. ring is "bigger" now, and not causing any problems at it's point.

So now I guess I'm left wondering what is causing the statis?

In the meantime, I was told, basically "eat smaller meals, drink more fluids with meals, chew smaller bites more thoroughly, and stay upright for at least an hour after eating."
 
Wildmtn, I don't know what could cause "stasis", I hadn't heard of that before. Is it similar to gastroparesis? Are there further tests they can do to look for the cause? It sounds like a sensible plan in the meantime to eat smaller meals and stay upright and so on. With my GERD and hiatal hernia, I've definitely learned the value of staying upright (stomach contents tend to pour up my throat if I bend over forward too much, like if I'm shoveling snow - it's not a fun time). I hope you can get more answers soon.
 
Cat I'm so sorry your grandma isn't doing so good. My grandma had early onset alzheimers and it really is a terrible thing to have to watch :(
Also I will be thinking of all of you across the pond who will be negatively affected by tomorrow's events, I'm so sorry it has come to this for you all. I can't bring myself to watch any of the footage which will be shown over here, I can't stand that man. Most of the UK view him as a joke in all honesty.

I got some good news this morning, the gastro dieticians decided to put me on the urgent list so I'm seeing them on Thursday about the possible tube feeds! Then I see the gastro consultant on Friday! I'm so so hoping something positive comes of both appointments.

One thing I'm struggling with more than normal right now is mucus :/ like a lot more than usual in my BM's and sometimes I'm passing only mucus which is pretty gross and frustrating to be honest. No idea why either! I've had more bowel pain than usual but no loose BM's so far. So odd! I will make sure I mention it at my appointment next week though.
 
Sarah, I can't bring myself to watch it either and I also hate that horrible man. I'm going to be offline tomorrow for sure, no TV and no internet (only Netflix, and even then nothing political). If the weather behaves then I'm going to run away from humanity for awhile and go out into the woods with my dog for some hiking. Most of us here view him as a joke, too (remember, he lost the popular vote) and it's really surreal and awful and depressing that tomorrow is actually going to happen. All I can do tomorrow is not pay any attention to it. And Saturday there's a women's protest march here, it's a sister march to the big one that is happening in Washington DC, so I plan to participate in the march here. I don't like to talk politics much on here, but honestly it's really awful and I hate all those horrible men (not just him but his VP and that awful Paul Ryan who is from my state too - if we impeach him then his awful VP becomes president, and if we impeach the VP then Paul Ryan becomes president, so it's a no-win situation, it's just horrendous).

I'm so glad to hear that you've got those appointments, and I hope it does get you the tube feeds and whatever else would help you feel better already! As for mucus, it can mean inflammation, although not always - everyone has mucus in their digestive tracts, but a lot of mucus does tend to indicate inflammation. Keep us posted on how the appointments go, got my fingers crossed for you! Good luck!
 
Hey Cat,

Did you wear a pink hat with the neat cat ears? I hope your march went well and you are OK. Some people acted a little wild i heard. I am so glad that here in Canada and in the United States we have the right to free speech and peaceful protest. I think it is always good and right to stand up for what you believe in! Women's rights are human rights! we are all equal! Good on you for making your stance known. It takes a lot of courage.

Peace and positive thoughts, not only to you but your entire nation.:hug:

All the best,

cmack
 
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I didn't end up going to the march. On Friday (inauguration day) I had this overwhelming sense of dread, and on Saturday morning I woke up and remembered that we have a new president, and I just couldn't stop crying. Could not pull myself together enough to pass as a functional human and just wanted to be alone, so I stayed home and just basically cried all day. I had really wanted to go, but I just couldn't. I cried for a full week after the election, so I guess I should have figured that I'd also cry after the inauguration.
 
Cat,

Sorry to hear that. AWWWW don't cry, I hope you are feeling a little better. Just remember you do get to vote again in four years. Maybe just try not to think about it. I wont be bringing it up again. I would rather not talk about it either!

Peace and love from "The Frozen North" We call Canada,

cmack
 
Okay so I've had my dietician appointment and gastroenterology appointment! Both went better than expected!

Dietician has given me another supplement to try, so I need to drink three per day altogether including the new one which is higer calorie and partially broken down. If I'm struggling with that then we will go down the tube route most likely. I have lost weight again sadly so my BMI is now 14.9 which sucks!

GI is ordering the gastric emptying test! I'm so relieved! I didn't have to beg or use my prepared case studies or anything! I should get that in the next 6 weeks :)
The GI is also in communication with the dietician and importantly is in agreement regarding tube feeding etc. I've also been given metaclopromide to try after not doing well with domperidone.

I came home and celebrated with a small portion of turkey bolognaise and an iced bun and within half an hour I've had to very urgent episodes of D which were quite watery :( I'm so scared it's a bug and because I've just eaten quite a lot for me that I will be horribly sick :( I'm really hoping it's just like pent up anxiety over the last 2 days coming out but either way I feel awful and scared and I can just tell I'm going to have to run to the toilet again any minute :(
 
sarahfh said:
Okay so I've had my dietician appointment and gastroenterology appointment! Both went better than expected!

Dietician has given me another supplement to try, so I need to drink three per day altogether including the new one which is higer calorie and partially broken down. If I'm struggling with that then we will go down the tube route most likely. I have lost weight again sadly so my BMI is now 14.9 which sucks!

GI is ordering the gastric emptying test! I'm so relieved! I didn't have to beg or use my prepared case studies or anything! I should get that in the next 6 weeks :)
The GI is also in communication with the dietician and importantly is in agreement regarding tube feeding etc. I've also been given metaclopromide to try after not doing well with domperidone.

I came home and celebrated with a small portion of turkey bolognaise and an iced bun and within half an hour I've had to very urgent episodes of D which were quite watery :( I'm so scared it's a bug and because I've just eaten quite a lot for me that I will be horribly sick :( I'm really hoping it's just like pent up anxiety over the last 2 days coming out but either way I feel awful and scared and I can just tell I'm going to have to run to the toilet again any minute :(
Click to expand...

I hope you feel better soon
 
Sarah, it's most likely anxiety and not a bug, please try to relax. I know that's easier said than done. Glad to hear that things went better than expected! I've also brought case studies to my GI (when I was asking for LDN in particular), glad to hear you didn't even need them, it's nice when you and the doctor are on the same page without having to argue why you want something. I hope the new meds and drinks help, and I hope you get a worthwhile result from the gastric emptying test. Please keep us updated of how that all goes!
 
Dear Sarahfh,

I hope you get well soon. I also think anxiety is a factor. I am on Valium myself as I suffer from high anxiety levels. I find keeping my mind preoccupied with something else also helps, like hobbies or reading. Sometimes I just go and build a bird house or do some other small project like organize my tools.

All the best and wishing you well,

cmack
 
Sarah, I completely understand that feeling of anxiety! I get it too. I consider myself a germaphobe and a sick-a-phobe? But I'm so glad your appointments went well! It sounds like they're finally listening to you. I can't believe your BMI is so low! But I'm so glad that tube feeding is becoming a real option now. It sounds like it might be what you need. Keep us posted!

Cmack, I totally bought a build and paint birdhouse kit this week! :)

A week ago I decided to up my dose of LDN a little to 0.75mg. It has definitely affected my sleep! I haven't been sleeping much at all. I also have really bad gas for some reason. I'm hoping my body will get used to it soon and these side effects will go away. I joined a couple LDN groups on Facebook, and it's been helpful to hear other people's success stories and advice and stuff.

I hope everyone is having a good weekend.
 
Thankfully my stomach settled around 2am. But it was rough going for a few hours.

I'm really struggling to manage the 3 supplements a day the dietician wants, especially with food too. So I expect my next appointment may discuss tube feeding more seriously. Although over the last couple of days I've been hungry because I have a slight cold so hopefully I will put a little bit of weight back on soon!
At least I like the new drink and it settles well! One flavour is basically an iced coffee with a few sugars in so that's actually quite nice!

akgirl I hope you do well on LDN :)

How is everyone else?
 
Time to complain. I feel like that's mostly what I do on here, but I have to get it out or I'd lose my mind. I always feel horrible, but these past three weeks have been extra bad for some reason. I've been sooo nauseous. Ugh. And last night I was up until like 3am because LDN is still affecting my sleep. I think I'm going to try to take some melatonin and see if that'll help at all. I always have a plan B and C and D for what I'm going to do next as far as trying to get diagnosed. But right now, I don't have any plans and it's scary. The doctor I'd been seeing for a year basically gave up on me (well she said, "My gut feeling is that you're depressed, and that's what's causing all of your symptoms.") I consider that giving up. That's usually what doctors say when they're out of ideas.

I'm currently not on any special diet, but I'm considering starting. I was on the SCD diet for a couple months for my SIBO, but it didn't make me feel any better. But I was also on antibiotics at the time, and they definitely made me feel worse. So I was thinking about trying it again. I'm hardly ever hungry, so I'm not too concerned about missing the foods that I love. I'd do anything to feel better!! But I also don't want to get too skinny. And sticking to that diet is a lot of work (tons of cooking), which I don't feel up to right now. So I don't know.

As a random side note.....do any of you know anything about the Epstein Barr virus? It's the one that causes mono. I've been hearing more about it lately. I watched this video about how the virus can be the cause of "mystery illnesses." And it has a link to autoimmune diseases. I had mono about 8 years ago. It's definitely a stretch, but I guess you never know??
 
Hi Everyone. I'm new here. 25 year old female having increasingly worsening symptoms. Here's a little bit of my backstory.

I have had digestive issues my whole life. I went through numerous upper GIs and ultrasounds as a kid, and my PCP chalked it up to having a sensitive stomach, and a mild case of IBS.

In 2014, my symptoms got worse including bouts of 7-10 days of constipation followed by a day of diarrhea, loss of appetite, nausea every single day, vomiting, severe abdominal cramping, fevers/chills, and night sweats. My PCP recommended an elimination diet, suspecting a food sensitivity. When I reintroduced gluten, I was sick for 4 days straight with diarrhea, bloating, and chills. My PCP said to eat a gluten free diet but did not pursue any further testing.

I have been gluten free since 2014, but that has not alleviated the symptoms. Since Nov. 2016, my symptoms have worsened. I have been forced to miss time from work. 10+ days at a time with no bowel movement, followed by violent diarrhea, oftentimes with no notice. Crippling abdominal pain mostly in my upper left hand abdomen and around my belly button area. Nausea every single day. Vomiting at least once a week. Cramping and abdominal pain worsens, particularly within 15 minutes of eating. I have had two accidents with diarrhea in public. The cramping is usually accompanied by fever/chills. Complete loss of appetite. Since Nov. 2016, I have lost nearly 20 lbs. (I currently weight 155lbs at 5'1")

I met with my PCP late December. I mentioned my symptoms, and she suspected IBS. She had me do a 7-day dulcolax cleanse (hell on earth, truly) before sending me for an ultrasound and bloodwork. The CBC came back "normal" with no red flags. Ultrasound didn't show any enlarged organs or ulcers. I had a follow up appointment with my PCP after following her recommended IBS regimine of dulcolax and colace. My symptoms continued to get worse, so she sent me to a gastroenterologist.

Met with my new gastroenterologist. He suspected IBS. Put me on a low-FODMAP diet, has me taking Citrucel twice a day, and miralax after 4 days with no bowel movement. He prescribed zofran for the nausea, which hasn't helped at all. He also scheduled me for an endoscopy and colonoscopy yesterday (1/30/17). He also sent me for bloodwork.

In terms of the bloodwork, it came back with a vitamin B12 deficiency, vitamin D deficiency, and elevated inflammation markers via a c-protein reactive test. He called and said it suggested something was going on other than IBS. As weird as it sounds, I felt elated that something showed up - closer to getting answers/treatment!

Prior to the coli/endo combo, I hadn't had a BM in 6 days. He prescibed Linzess, which didn't produce a BM, even after 2 days of taking it. I started prep on Sunday, which I had no problems with. I used Suprep, and was cleared out after the first dose (still took the second dose). I had the coli/endoscopy yesterday. He took a bunch of biopsies. Said that he didn't see any concerning inflammation and that we would wait to see what the biopsies show. He said he was back to thinking it was just a more severe case of IBS.

As weird as this sounds, I felt defeated. I have tried all the recommended IBS medications. Nothing seems to work. Stool softeners, high fiber, low fiber, citrucel, dulcolax, milk of magnesia, gluten free, everything. Nothing seems to help, and I can't keep missing work. I need answers.

Hoping for the best, but what is the best? I feel terrible saying this, but I hope the biopsies show something. I can't deal with another crappy (no pun intended) IBS diagnosis. It seems that my blood work suggests that something else is going on. The nurses told me that I would hear back about the biopsies in 3 weeks or less. Ughh, so long! After years of GI issues, I just want some answers!!

Doing my research to help advocate for myself in case the biopsies come back negative. Not sure what my next steps should be. I haven't had the pill camera test or a stool sample test, yet.

Thanks for reading.
 
Hi Megan, welcome to the forum. One thing stands out for me right away from reading your post - you mentioned pain in the upper left abdomen and in the belly button area. That might indicate that your illness is located in the small intestine. Unfortunately, the upper and lower scopes don't see much of the small intestine, only the very beginning and very end, and there's a whole lot of small intestine that they cannot see/take biopsies from. The pill cam can see the small intestine, although it cannot take biopsies. If it were me, I'd definitely be pursuing a pill cam if the scopes don't find anything. You might also want to ask about MRE, which is an MRI-enterography - it uses special contrast and looks specifically at the small intestines as well. It also can't take biopsies, but it can see things like narrowing or thickening of the small intestine.

You also mentioned feeling sick within minutes of eating - have you been looked at for gastroparesis? A gastric emptying test can diagnose that. I haven't had that test myself so I don't know much about it. I'm going to tag Maya142 as she knows a lot about gastroparesis.

I hope the biopsies do give you some answers, but don't get too discouraged if they don't. It doesn't mean that you don't have a legitimate illness, it just means they haven't found it yet (it also doesn't mean it's automatically IBS). Unfortunately sometimes we have to fight to get answers, but we've all been there & done that too and we're here to help you along the way. You've come to the right place. :)
 
Crippling abdominal pain mostly in my upper left hand abdomen and around my belly button area. Nausea every single day. Vomiting at least once a week. Cramping and abdominal pain worsens, particularly within 15 minutes of eating
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Some of your symptoms do sound like Gastroparesis (delayed gastric emptying). Gastroparesis is when your stomach does not empty properly. As a result, food sits in your stomach and causes all sorts of symptoms - especially nausea, early satiety, pain etc.

Do you get nauseous with meals? Full after taking a few bites? Vomit after eating?

Pain and weight loss are also common. Many patients with Gastroparesis also deal with constipation (slow motility through their GI tracts).

The test for Gastroparesis is pretty simple - it's called a gastric emptying test. You eat a meal (typically eggs and toast) which has a radioactive tracer in it. Then they take pictures of your stomach at intervals to determine how much of the meal has left your stomach. At the end of 4 hours, if you have more than 10% of the meal left, you have Gastroparesis.

Gastroparesis is typically treated with motility medications. Diet can help - low fat and low fiber meals are the easiest to digest.

Some of your other symptoms - night sweats, fevers, diarrhea, elevated inflammatory markers - sound more like IBD than Gastroparesis. I agree that a pillcam or an MRE to check your small bowel is a good idea - sometimes Crohn's can hide in there.

Good luck!!
 
Hi Megan,

I wonder if you might have strictures in there somewhere. Maybe something to talk to the Doc about. I'm never taking the pill cam as I have suspected strictures and sometimes it can get stuck in them.............Then its off to the surgeon to get the darn thing out! No thanks I don't want a robot pill stuck in my belly!

I wish you all the best and then some,

cmack
 
Hi Cat & Maya!

I have not been tested for gastroparesis, but I will definitely bring it up at my next GI appointment. I have been told by my gastroenterologist not to google because I will just worry myself, but at this point, I am googling so that I can be prepared enough to advocate for myself.

I am not sure if I feel full after eating a little - I guess I consider that lack of appetite. I have been forcing myself to eat to get some sort of nutrients, but my bloodwork showed that I am deficient in a bunch of vitamins. I will have to pay more attention the next time I eat to see if it is a loss of appetite after a few bites or a feeling of fullness.

Thank you both so much for the suggestions. I am ready to fight for treatment. I worry about losing my job (I'm an attorney) and need to start feeling better.
 
Hi, Megan. I hope you get answers soon. Early on, you mentioned about the gluten. Have you tried keeping a food diary to see what foods aggravate your system? Again, I hope you get answers soon.
 
Cmack, there is the patency capsule that you could do before trying the pill cam - it's the same size and shape, and will dissolve if it gets stuck. However, when I had my pill cam (this was back in 2010 so things may have changed since then), I was told that insurance typically does not cover the patency capsule. I was also told that it sometimes costs more than the pill cam itself! I do not understand how that can be, but it may at least be worth asking about if you ever do consider trying the pill cam.

Megan, I agree that advocating for yourself is one of the most important things you can do right now. Do take your googling with a large grain of salt - most people don't go onto the internet to talk about how things are going great, they go to talk about their horror stories. So you may find that you encounter a lot of horror stories, but that doesn't necessarily represent the general experience of this illness or these tests, etc. This forum is a great place to start, feel free to ask us any questions on here or just vent or get support, whatever you need. ccfa.org is the Crohn's and Colitis Foundation of America and they've got some good information as well. I hope that's helpful. Good luck and keep us posted!
 
Hey Cat,

Thanks for the info. I had never heard of a patency capsule I will look into that and mention it to my GP. You hit the ball out of the park about the horror stories. That is very true that the people with bad experiences definitely tend to be ten times as vocal (or more) than those who are happy and had good results.

All the best and thanks again,

cmack
 
Megan, I've also always had stomach issues, but my symptoms got way worse and debilitating in 2014 as well. And I'm 26, so we're around the same age too. Your symptoms definitely sound like more than IBS to me. I'm impressed that you're still able to work. I ended up having to quit my job and drop out of grad school because I was just too sick. I completely understand how frustrating this can be! Doctors aren't very helpful, and it feels like no one gets it. Except everyone on this forum, of course. :) Keep us posted on everything. I'll be hoping the best for you!
 
akgirl said:
Megan, I've also always had stomach issues, but my symptoms got way worse and debilitating in 2014 as well. And I'm 26, so we're around the same age too. Your symptoms definitely sound like more than IBS to me. I'm impressed that you're still able to work. I ended up having to quit my job and drop out of grad school because I was just too sick. I completely understand how frustrating this can be! Doctors aren't very helpful, and it feels like no one gets it. Except everyone on this forum, of course. :) Keep us posted on everything. I'll be hoping the best for you!
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Hi Akgirl,

I feel like the more I tell my doctor my symptoms, the crazier I sound. It's strange hoping for a positive biopsy, but at least that would confirm my symptoms.

I am not sure how I made it through law school (graduated in May) with all this going on. I managed to do well and only to have one accident while there. Now, I am working in a year-long position which only affords 10 sick days. I have burned through almost all of them and am here until the end of July.

None of these dietary changes or over the counter meds are doing anything. I am hoping that the b12 supplement will help my energy levels because my last blood work showed that I am extremely deficient. Amy improvement on quality of life would help! I am taking it day by day, but it is so hard to get out of bed (and leave the comfort of my own bathroom) to go to work.


I am so sorry that you had to quit your job and drop out of school. That is awful! I hope that your doctors can help you so that you can get back to pursuing your dreams.
 
Hi Megan,

I have been taking time release B12 after my Doc recommended it a year ago. I think it upped my energy. I can't be sure though because I also switched to being vegetarian and to mainly organic foods at the same time.

Hope the B12 helps and congrats on graduating law school despite your illness.

All the best,


cmack
 
After one endoscopy that showed severe ulceration and a structure in my duodenum, CT scans that show severe inflammation in my small intestine (duodenum through ileum, skip pattern), high CRP, and two separate week-long hospitalizations for partial obstructions, I saw an IBD "specialist" who told me my regular GI was wrong and I did not have crohn's. He based his opinion on the fact that I heal really well on high doses of prednisone. In his opinion, crohn's patients never achieve full mucosal healing. He offered no explanation for the inflammation in my small intestine, the intense pain, loss of appetite, etc. My regular GI, fortunately, reassured me that although I respond well to steroids, I have all the other symptoms of crohn's, even if I do not present with "classical symptoms" (my ESR isn't usually raised when I'm sick although my CRP is, for example). In between bouts of inflammation I am chronically constipated. I tried 6MP last spring but it gave me severe pancreatitis, so I am taking Entocort with limited success right now (lots of severe pain and constipation alternating with diarrhea, nausea, no appetite, etc.).

One of the biggest problems in diagnosing crohn's is that GIs want to see and biopsy inflamed tissue. If the inflammation is in the small intestine that can be difficult. In addition, patients are often scoped after being on steroids, when the likelihood of finding inflammation is lower.

It sounds like you have something more than IBS since your inflammatory markers were elevated. I agree that you should ask for a pill cam, MRE, CTE, or even a barium swallow with small bowel follow through. Your GI needs to take a look at your 23 feet of small bowel! Since constipation is one of your primary symptoms I am surprised he didn't already suggest small bowel imaging.

Let us know how you're doing.
 
Jabee said:
After one endoscopy that showed severe ulceration and a structure in my duodenum, CT scans that show severe inflammation in my small intestine (duodenum through ileum, skip pattern), high CRP, and two separate week-long hospitalizations for partial obstructions, I saw an IBD "specialist" who told me my regular GI was wrong and I did not have crohn's. He based his opinion on the fact that I heal really well on high doses of prednisone. In his opinion, crohn's patients never achieve full mucosal healing. He offered no explanation for the inflammation in my small intestine, the intense pain, loss of appetite, etc. My regular GI, fortunately, reassured me that although I respond well to steroids, I have all the other symptoms of crohn's, even if I do not present with "classical symptoms" (my ESR isn't usually raised when I'm sick although my CRP is, for example). In between bouts of inflammation I am chronically constipated. I tried 6MP last spring but it gave me severe pancreatitis, so I am taking Entocort with limited success right now (lots of severe pain and constipation alternating with diarrhea, nausea, no appetite, etc.).

One of the biggest problems in diagnosing crohn's is that GIs want to see and biopsy inflamed tissue. If the inflammation is in the small intestine that can be difficult. In addition, patients are often scoped after being on steroids, when the likelihood of finding inflammation is lower.

It sounds like you have something more than IBS since your inflammatory markers were elevated. I agree that you should ask for a pill cam, MRE, CTE, or even a barium swallow with small bowel follow through. Your GI needs to take a look at your 23 feet of small bowel! Since constipation is one of your primary symptoms I am surprised he didn't already suggest small bowel imaging.

Let us know how you're doing.
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Jabee,

You obviously know what you are talking about. It sounds like you have been to hell and back yourself.


All the best,


cmack
 
Update:

Received a message from my GI through the patient portal saying that he is convinced that I have IBS, and that a lot of times IBS patients experience a reset after a colonoscopy, so I should just wait and see.


He went from saying that my b12 level was very deficient to saying that it is the lower and of normal and that the fatigue is unrelated to any digestive issues I "may or may not have" and to see my PCP about it.

I am at a loss. Asked about the camera pill and he said no need because it is IBS. Doesn't make any sense based on my symptoms and blood work. seeing my PCP this morning, but I feel defeated and discouraged.

I am worried about losing my job because I am so tired all the time. On top of all the digestive issues. I just don't know what to do. Am feeling discouraged, crazy/hypochondriac, and tired.
 
Megan, if it were me, I'd look for a new GI. It sounds like your current GI is being very dismissive of your symptoms. And IBS is typically a diagnosis of exclusion, meaning they've ruled out every other possibility - and it sure sounds to me like they haven't, if they haven't looked at your small intestine at all. You're not a hypochondriac, don't let your doctor make you feel that way. Sometimes doctors are too lazy or just want to put a label on something, so they call it IBS even when that doesn't seem right. You know your body best and you know that something more than "just IBS" is going on, so don't stop fighting. I know you're tired and frustrated, and it's okay to give up for a little while, but after that you know you need to pick up the fight again and keep looking for proper answers. I feel for you, because I've been there & done that for 7 years and counting. It's incredibly exhausting and endlessly frustrating, but we're here for you. Don't give up. Ask your PCP for a referral to a new, better GI. Your PCP might know of a good one, if not, check with your insurance company to see which GIs are covered under your plan, then do some googling and look at the doctor reviews here on the forum to see which ones sound the best to you.

Here's the link to the forum's doctor directory and doctor reviews:
http://www.crohnsforum.com/doctor/
http://www.crohnsforum.com/forumdisplay.php?f=79

As for B12 deficiency - it's extremely common in Crohn's. B12 is absorbed in the terminal ileum, which is the last part of the small intestine, and that's the spot where Crohn's most commonly manifests. If the terminal ileum is inflamed or has scar tissue, then it's not able to absorb B12 as well as healthy tissue would, and as a result, a deficiency occurs. So look for a new GI, and ask them to check out your small intestine. That's what I would do.
 
Cat-a-Tonic said:
Megan, if it were me, I'd look for a new GI. It sounds like your current GI is being very dismissive of your symptoms. And IBS is typically a diagnosis of exclusion, meaning they've ruled out every other possibility - and it sure sounds to me like they haven't, if they haven't looked at your small intestine at all. You're not a hypochondriac, don't let your doctor make you feel that way. Sometimes doctors are too lazy or just want to put a label on something, so they call it IBS even when that doesn't seem right. You know your body best and you know that something more than "just IBS" is going on, so don't stop fighting. I know you're tired and frustrated, and it's okay to give up for a little while, but after that you know you need to pick up the fight again and keep looking for proper answers. I feel for you, because I've been there & done that for 7 years and counting. It's incredibly exhausting and endlessly frustrating, but we're here for you. Don't give up. Ask your PCP for a referral to a new, better GI. Your PCP might know of a good one, if not, check with your insurance company to see which GIs are covered under your plan, then do some googling and look at the doctor reviews here on the forum to see which ones sound the best to you.

Here's the link to the forum's doctor directory and doctor reviews:
http://www.crohnsforum.com/doctor/
http://www.crohnsforum.com/forumdisplay.php?f=79

As for B12 deficiency - it's extremely common in Crohn's. B12 is absorbed in the terminal ileum, which is the last part of the small intestine, and that's the spot where Crohn's most commonly manifests. If the terminal ileum is inflamed or has scar tissue, then it's not able to absorb B12 as well as healthy tissue would, and as a result, a deficiency occurs. So look for a new GI, and ask them to check out your small intestine. That's what I would do.
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Thank you, Cat! My appointment with my PCP went well. She started me on b12 injections and is fairly certain that whatever is wrong with me is autoimmune. So she is sending me for a bunch of blood work to rule other autoimmune diseases out. Still waiting on my GI to send me the biopsy results and other records so I can bring them to a new GI. Thank you for that link to doctors. I will be googling this weekend.

You all are the best. I have felt so alone in all this. Nice to know that there are people who understand.
 
meganshealthjourney said:
Update:

Received a message from my GI through the patient portal saying that he is convinced that I have IBS, and that a lot of times IBS patients experience a reset after a colonoscopy, so I should just wait and see.


He went from saying that my b12 level was very deficient to saying that it is the lower and of normal and that the fatigue is unrelated to any digestive issues I "may or may not have" and to see my PCP about it.

I am at a loss. Asked about the camera pill and he said no need because it is IBS. Doesn't make any sense based on my symptoms and blood work. seeing my PCP this morning, but I feel defeated and discouraged.

I am worried about losing my job because I am so tired all the time. On top of all the digestive issues. I just don't know what to do. Am feeling discouraged, crazy/hypochondriac, and tired.
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I am sorry for what you are going through. You know your body better than anyone else. If you don't feel the doctor is right, keep pushing for answers.
 
Megan,

You have to keep fighting this misdiagnosis. That is what I believe it to be is plain old wrong. You might need to find a different doctor. I never did get a diagnosis and I clearly have IBD. I suspect you have a form of IBD as well. Keep on fighting till you win.

cmack


"First they ignore you, then they laugh at you, then they fight you, then you win."

-Gandhi
 
Cmack, may I ask, how long have you been undiagnosed? It's been just over 7 years for me - I got sick in October 2009. Like you, it's almost certainly IBD for me, as we've ruled out most everything else and I respond well to IBD meds (currently on pred, Lialda, and LDN). But for whatever reason, it hides really well when it comes time to have tests. I know I should be patient - I have an aunt who was diagnosed with Crohn's fairly recently, and she suffered for something like 30+ years with symptoms before being properly diagnosed (she said that after all those years she finally developed scar tissue which was seen on a scope, and that's what led to her getting her diagnosis - nobody actually wants scar tissue though as that's something that can only be removed surgically). I just hope it doesn't take me 30 years like it did for my aunt!

Megan, your PCP sounds very good, sounds like she's taking you seriously and that's huge. My primary care doc is similar, when I first got sick I hadn't seen him for awhile but he's in the same system as my GI, so he could see all the tests that I was having done. When I did finally go to see him, the first thing he said to me was, "So, do you have Crohn's or Colitis?" I was like, I don't know, I was hoping you could tell me! He's always taken me seriously - he even writes down that I've been diagnosed with "IBD/colitis" when I send him FMLA paperwork. So yeah, I'm very glad to hear that you've at least got one good doctor - hopefully you can find a great GI as well and have a good team working to get you a diagnosis and feeling better.
 
Cat,

I have had all sorts of digestive issues (cramps, urgency, rectal irritation) For as long as I can remember. My first major problem(age 27) manifested as a very severe perianal abscess that became a complex series of fistulas. I am 38 now. My new GP believes I have IBD based on all my past problems(his wife has IBD as well). He doesn't really think I need a diagnosis because he has declared me permanently disabled due to surgical procedures as there is proof of many. I may never get a diagnosis of IBD. Now I have to jump through hoops for the government to put me on disability assistance. I admittedly have been dragging my heels on that one as I have a very hard time with getting a paycheck for doing nothing. I'm going to have to do it though as I have truly no other choice. I need money to enroll in some courses from B.C.I.T. to Earn a 2 year diploma in computer science technology related areas. I need to be able to work from home. I am not reliable enough to hold down a regular job anymore.

cmack
 
cmack said:
Megan,

You have to keep fighting this misdiagnosis. That is what I believe it to be is plain old wrong. You might need to find a different doctor. I never did get a diagnosis and I clearly have IBD. I suspect you have a form of IBD as well. Keep on fighting till you win.

cmack


"First they ignore you, then they laugh at you, then they fight you, then you win."

-Gandhi
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Cmack, thank you. I know that I have to fight, I'm just tired. I know I haven't been fighting as long as some, only since 2014, but the last few months have been terrible health-wise.

Hoping to start fresh on Monday by finding a new GI.
 
Cmack, my goodness, you really have been through the wringer! I wish you luck with getting disability and also with your classes. My brother taught himself computer programming and it can be a pretty lucrative field (and he doesn't even have a degree).

I hope everybody has a calm and restful weekend. I think I'm getting a cold so I plan to rest up tonight and hopefully feel better tomorrow. I'd really like to go hiking this weekend but I need both my body and the weather to cooperate, so I don't know if the odds of that are very good!
 
Hey all,

Megan,

You have been fighting. It makes the best of us tired to have this illness. I appreciate your comments on here and I look forward to being here to help you get things headed in the right direction.

Cat,

Thank you for appreciating my struggle. And also thanks for the encouragement. Better go have a cat nap if you need one.


I consider you both allies and friends,

cmack
 
Cat-a-Tonic said:
Megan, if it were me, I'd look for a new GI. It sounds like your current GI is being very dismissive of your symptoms. And IBS is typically a diagnosis of exclusion, meaning they've ruled out every other possibility - and it sure sounds to me like they haven't, if they haven't looked at your small intestine at all. You're not a hypochondriac, don't let your doctor make you feel that way. Sometimes doctors are too lazy or just want to put a label on something, so they call it IBS even when that doesn't seem right. You know your body best and you know that something more than "just IBS" is going on, so don't stop fighting. I know you're tired and frustrated, and it's okay to give up for a little while, but after that you know you need to pick up the fight again and keep looking for proper answers. I feel for you, because I've been there & done that for 7 years and counting. It's incredibly exhausting and endlessly frustrating, but we're here for you. Don't give up. Ask your PCP for a referral to a new, better GI. Your PCP might know of a good one, if not, check with your insurance company to see which GIs are covered under your plan, then do some googling and look at the doctor reviews here on the forum to see which ones sound the best to you.

Here's the link to the forum's doctor directory and doctor reviews:
http://www.crohnsforum.com/doctor/
http://www.crohnsforum.com/forumdisplay.php?f=79

As for B12 deficiency - it's extremely common in Crohn's. B12 is absorbed in the terminal ileum, which is the last part of the small intestine, and that's the spot where Crohn's most commonly manifests. If the terminal ileum is inflamed or has scar tissue, then it's not able to absorb B12 as well as healthy tissue would, and as a result, a deficiency occurs. So look for a new GI, and ask them to check out your small intestine. That's what I would do.
Click to expand...

I could not agree with this more. Megan, I am sorry to hear that your GI is being so dismissive of your symptoms. I went to a GI doctor last year based on the referral of my PCP because she ruled out gallbladder disease and couldn't figure out why I was having symptoms. The guy was rude and all-around obnoxious because he acted like every one of my symptoms - intense pain that seemed to come from upper left abdomen, bloating, cramps, constipation alternating with diarrhea - could be explained away by the IBS diagnosis. Trying to be a good patient, I went along with his recommendations and took Bentyl, fiber, and Gas-X - none of which even made a dent in my symptoms. Then he said to take Peppermint Oil (which worsened my GERD) and probiotics (not a bad thing, but it didn't help my symptoms). He did a HIDA scan, an upper and lower endoscopy, SIBO breath test, and a CTE but nothing was ever found. Finally, my insurance switched at work and the group was no longer covered so I discontinued going to him.

About 2 weeks later, I made an ER visit because of intense lower back pain. They did bloodwork and a urine test (my BP was 162/97 which is VERY abnormal for me) but the ER doctor was worthless and sent me home to follow up with my PCP since the pain was mostly gone 2 hours later (it went from an 8 to a 3). I saw her 2 days later and she was very concerned (more concerned than the ER doctor, I might add) and sent me to my OB/Gyn because she was worried it was an ovarian cyst that had ruptured. I saw my gynecologist a week later and he immediately did a pelvic ultrasound and, due to other symptoms like abnormal bleeding, he recommended a laparoscopy and a D&C to find out what was causing my symptoms. 2 months later (there was a LONG waiting list), he went in thinking he would find endometriosis which would explain the so-called GI symptoms but found a BASEBALL-sized ovarian cyst on my left ovary that was pushing into my intestines and causing pain to radiate to my upper abdomen! My PCP was right! He drained the cyst and I am feeling so much better!

Anyway, the point I am trying to make is that doctors don't know everything. It is your body and clearly you know that something is not right. It bothers me that your doctor is reneging on what he told you about your lab results and it appears that he is simply using that as a pass to get you to admit defeat. IBS is like a band-aid on a large wound - you can use it, but it will eventually fall off and the wound will not heal properly. You owe it to yourself to find a doctor who will take you seriously and work together. It may take a bit of trial and error, but there are some great doctors out there - I have 3 (my PCP, ENT, and OB/Gyn) - but it takes some research to find them. Use the doctor directory here and/or Healthgrades. Also, it helps if you can read their biography before you see them so you know what their special interests are in medicine. There are many GIs but not all of them know well enough about IBD - mine certainly didn't. Best of luck to you! :)
 
Thank you, Miss Leopard! I have my yearly appointment with my OB/GYN on Feb. 13th, an appointment with an allergist (my PCP suspects a wheat allergy on top of everything else) on the 24th, and a follow up with my PCP on the 24th. Attacking this from all sides and trying to get as many good doctors in my corner as possible. Thank you for the support!
 
meganshealthjourney said:
Thank you, Miss Leopard! I have my yearly appointment with my OB/GYN on Feb. 13th, an appointment with an allergist (my PCP suspects a wheat allergy on top of everything else) on the 24th, and a follow up with my PCP on the 24th. Attacking this from all sides and trying to get as many good doctors in my corner as possible. Thank you for the support!
Click to expand...

Ick! Wheat/gluten allergies suck! I have both and Celiac disease so I can't use anything topical with wheat in it and I cannot eat it or I get very sick. When I was first diagnosed, I had no idea how many products contain wheat. I bought a tube of Physician's Formula tinted moisturizer and broke out in hives all over my face - it felt like ants crawling all over my face. I couldn't figure out what was going on until I looked at the ingredients and found that it contained "wheat bran glycosides." Why that was in tinted moisturizer, I'll never know. It's in a LOT of hair products, too. :(
 
Yeah, gluten is in everything. I'm fine with eating gluten but my mother is gluten-free (by choice, not because of illness - but when you're gluten-free for a long time, your body starts to lose the ability to break down gluten, so as a result she now has to be gluten-free or she will get sick! I'm the same way with beef).

So my mother and I went to Japan last year. We figured it'd be easy to find food for her to eat, because it should just be a lot of fish and rice and veggies, right? Nope. I should add that she's also soy-free and it turns out she has an allergy to raw fish. And all those cute little onigiri rice balls that you can buy literally everywhere? They have gluten. Except for maybe some of the plum ones. (Some things got lost in translation, and I don't speak/read Japanese.) They really don't know what gluten is in Japan, you ask them to make something gluten-free (she even had a card printed in Japanese saying she couldn't have gluten or wheat), but they'd just look at you like you're insane. Fortunately, pretty early on in our trip, we discovered kaiten-sushi - conveyor belt sushi. And my mom found that cooked shrimp sushi was something she could reliably eat without feeling ill - it's got no soy sauce, it's cooked and not raw, and there's no gluten hidden anywhere. She ate so much cooked shrimp sushi, we actually had at least one sushi chef make fun of us. :p At a kaiten-sushi place in Kyoto, they had something called ebi avocado (cooked shrimp sushi with avocado). It was delicious and we kept ordering more - you could wait for it to come around on the conveyor belt, or you could just order it directly from the chef. So we kept ordering 3 plates of it, we'd each have one and then we'd split one. And then we'd order more. The word for 3 is san, so we kept asking for san ebi avocado. And the chef kept saying, "San!??" He was like, really? :p Yep, really. It was delicious and belly-friendly for both of us so that's mainly what we ate.

So yeah, if anybody here is planning a trip to Japan and you're gluten-free, plan on eating a lot of sushi and not much else. (I should add that I'm not complaining - I love sushi and it was all wonderful and delicious!)
 
Cat-a-Tonic said:
Yeah, gluten is in everything. I'm fine with eating gluten but my mother is gluten-free (by choice, not because of illness - but when you're gluten-free for a long time, your body starts to lose the ability to break down gluten, so as a result she now has to be gluten-free or she will get sick! I'm the same way with beef).
Click to expand...

I've never understood why gluten is in candy such as Twizzlers. When I was diagnosed with Celiac, I researched online what to stay away from and it was definitely difficult at first. Then, the wheat allergy issue came later (I didn't get the Physician Formula stuff until 1 year into my diagnosis) so I had to be really careful. I've found that I am VERY sensitive to any sort of wheat/gluten products - even more so than before I went gluten-free. I know almost immediately when I've been "glutened" because my body is not shy about telling me. I break out in either zits or hives, I have BAD GI upset, and my body is not right for weeks afterward. :(
 

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