Undiagnosed and frustrated

Hi,
I'm new here and guess I'm looking for a little comfort, reassurance and understanding after coming up to 4 years of utter misery.

Ill try and give the watered down version. So 4 years ago I started with severe nausea and loss of appetite I had a scope down the throat that threw out gastritis and was put on omeprezole for acid suppression. Symptoms continued with debilitating nausea which worsened after food and constant belching and indigestion no matter what I ate and how bland. I also had intermittent heartburn and pressure and pain in the epigastric region. I continued on omeprezole whilst undergoing random tests as omeprezole was just not helping me. During this time then the joint pain started, really stiff and painful joint seizing up all the time. I went through a few spells having to come down the stairs shuffling on my bottom as my kness just went. I then began being really tired all the time, with pins and needles and breathlessness. It was then diagnosed I had b12 deficiency and iron deficiency. I'm currently on 3 monthly b12 injections and iron infusions.
The tests I've had have just thrown up sibo which is now treated and eliminated, gastritis, h pylori and rapid transit of my upper stomach. My symptoms have progressively worsened over the years making going to work and living any kind of life extremely hard which in turn gets me really down as before all this I was a happy, healthy busy person.
I live with daily pain, discomfort, awful nausea, indigestion which rules out ever being able to make a plan as I never know what's coming next. The plot thickened when a year ago I developed a bulge/lump in my lower right side my gastro was convinced it was a hernia and just went straight in to operate without a scan. I had the Op a few months ago now and no hernia was found just adhesions in the illecal valve/caecum area which were cut or whatever they do with them. The bulge/lump still remains. My gastro has batted crohns about a few times to me and said it can be a very fiddly/difficult thing to detect and in average can take 7 years to diagnose. I saw him this week and he would like to do a colonoscopy as he said the lump and gurgling is coming from my caecum and he is now questioning why I had adhesions in the first place. On top of daily nausea, indigestion, upper gastric /chest pain I now present with awful bowel cramps every time I eat no matter how small the portion or bland. The lump/bulge gurgles and it just feels like contents aren't getting passed that area freely if that makes any sense.
I was under a terrible gastro for years who did some tests but just didn't seem bothered about how this is effecting the quality of my life, he just sent me away with new medication and left me on it which is why I believe I needed up with all the bacterial due to long term acid suppression. He left me so low in b12 after saying my bloods were fine I collapsed at home and had to go to hospital where they were stunned at my low b12 reading I remember at the time telling him I had numbness in my legs but he looked at me like I was insane. I have also had the IBS and dyspepsia cards thrown at me at times during the last few years which angers me so much. I do have IBS and I know what it feels like. That is something I can live with as it just comes in bouts that are short lived the symptoms above are 24/7.
I have lost weight and feel quite fragile being so thin but no matter what I eat I am just unable to put a pound on. I'm also low in vit D.
This is the very watered down version of the last few years but I'm guessing you guys must feel frustrated, angry and alone sometimes like me. It's completely controlling and dictating my life. I could make a plan to do something and have to cancel 5 minutes before because I'm so sick. I massively fear for my future and just want a diagnosis now so I can at least try some relevant treatment.
I didn't really think Crohn's disease but my gastro has mentioned it a few times with the weight loss, mouth sores, b12, iron and vit D deficiency, nausea, indigestion and now this cecal mass he appears to be going down the route.

I would really appreciate if anyone has had similar experience to share with me and get in touch as I feel at the end of my tether now.

Thank you so much in advance.
Ali xx

Hi Ali t, I've moved your post to its own thread. This way, it should get more views and more responses.

I've been undiagnosed for close to 4 years myself so I understand your frustration. For what it's worth, it doesn't sound like IBS to me (I'm not a medical professional by any means, this is just my layperson non-professional opinion). You are correct, you don't get things like unintentional weight loss or low B12 with IBS. I'm glad to hear your GI sounds to be taking you more seriously, and I agree that Crohn's/IBD would be a good one to investigate. Have you been investigated for illnesses such as Lupus, Addison's disease, or Behcet's disease? I know all of those can cause Crohn's-like symptoms but are sometimes overlooked by doctors. There's a girl who used to be active on the forum, she eventually got diagnosed with Behcet's, and I know she has some of the symptoms you mentioned (weight loss, low B12, mouth sores, and a palpable bulge in her abdomen). Here's her thread which might give you some more info to go on:
http://www.crohnsforum.com/showthread.php?t=44354

I am sorry to hear about the weight loss - I was the same during my first year of being ill. I could not gain any weight no matter how much I ate - I would stuff myself with high-calorie foods when I was feeling okay, and I'd only maintain my weight at those times, never gain. Then I'd flare and I'd lose more weight. I was starting to get scary skinny, it was not fun. Fortunately around that time my doctor decided to try me on some IBD medications, and it worked well and I actually got into remission and was able to gain back the weight I had lost. So hopefully your GI can either figure things our and/or get you on a trial of meds to see how you do and hopefully get you some relief. Have you tried any IBD meds yet, anything like mesalamine, budesonide, or prednisone? It might be worth it to ask your doctor for a trial of something like that - that was the thing that really helped me. I wasn't getting anywhere with the tests, everything was normal, and I just kept getting sicker. Taking a trial of medication that worked convinced my GI that I must have some type of IBD going on, and he is pretty comfortable with me taking the milder medications long-term as long as I check in with him every few months. So if you continue to hit dead ends with testing, keep in mind that you could ask your doc for a trial run of one of the medications used for IBD.

I cant really add anything to what cat has advised.. but just wanted to chime in and say that we are all here for you.. and if you need to vent, feel free to do so

Many of us have been through similar situations.. and hopefully we can offer the support you need x

Thank you for your reply cat-a-tonic I really appreciate and also bozzylozzy. It's quite isolating being sick all the time so its helpful to share I think.
I was thinkingnthenexact same things regarding asking for a low dose of whatever medication is used to treat crohns and see if I respond. I should be having the colonoscopy in the next few weeks and ill take it from there I just hope I get an answer. I know the severity of my symptoms does not warrant an IBS diagnosis and it seems a lot of health care providers brandish this label around lots even a fee friends of mine with endometriosis were told they had IBS for years whist they were suffering. I do have IBS and I get a bout when I under stress but it soon passes this is not in that realm it's daily and every second.
Immbeyond down with now as its effecting every part of my life and I feel indontnrecognise myself at times. If I could just get some form of diagnosis it would at least be something to work on and give me hope as at present I feel hopeless with it.
It's funny you should mention lupus and addisons as I have looked into those in the past I'm unsure how you test for those and I haven't heard of that other rare disorder. I just know something somewhere is not working as it should and its wreaking havoc. It's upsetting when you get branded with the IBS card as I can guarantee if some of these GIs lived with this they would know for sure it wasn't IBS.
I guess we're all on this frustrating ship. What kind of symptoms donyoubhave if you don't mind me asking?
Thank you xx

Ali, with regards to what symptoms I have - it's odd because my symptoms have changed over time. During the first year of my illness, my main symptoms were diarrhea (sometimes up to 30 times a day), chills (but no fever), night sweats (but apparently also no fever), abdominal pain in the lower right, joint pain particularly in the hips, migraines, weakness, dizziness, weight loss, paleness, depression. Then my doctor put me on medication and I had about 2 good years of remission. I really didn't have much in the way of symptoms during those 2 years.

Now I'm in a mild flare, but my symptoms are different. I've had some blood in my stool, my weight is stable and I'm not depressed (I'm exercising regularly which I think is helping keep stuff like that under control), I'm having diarrhea and cramping pretty regularly, but it's a few times a day, whereas it'd be 20 or 30 times a day in my previous flares. Some abdominal pains but it jumps around, it's not always in the lower right. Joint pains have progressed and worsened (the arthritis was in remission for a couple years too but came back last winter). So yeah, I'm not doing great, but certainly not as bad as I was during my first round of flares - I'm still functional this time around and I think that's mostly thanks to the fact that my medications are working so-so, and that I'm exercising regularly.

So that's me. Let me try to briefly address the other things you asked about. For testing for Lupus, they can do a blood test to check your ANA, and there's also a checklist where if you meet a certain number of the criteria then they can pretty safely say it's Lupus. For Addison's, there's also a blood test, I think it's called the ACTH test? I had it done a few years ago but I can't remember the name. It's worth having, if for nothing else to rule out Addison's. My GI gave me a whole bunch of tests like that to rule out various things, so now I basically have to have IBD just because we've ruled out most everything else!

Thank you I will see my GP and enquire about the other auto immune diseases. Like yourself my joints are painful however its more my knees and wrists really stiff and painful. It's the constant nausea, indigestion and cramps I just can't coexist with on too f the chest pressure and pain. I just hope I get some answers soon as over the 4 years I've progressively got worse. Although I have regular b12 jabs and iron infusions I still get really tired all the time, not sure if that's a symptom or just exhaustion from it all. I get so frustrated at the ibs and dyspepsia routes even though they have found numerous abnormalities . From what I've read I'm not the only one this happens too.
Is nausea and indigestion a symptom of crohns I've read it can be and also that some people presented with this lower right lump and that's when it was finally detected however presented in upper symptoms with some people.
I get frustrated ate time frames of appointments I only see my GI once every 3-4 months and a second feeling like this is long enough.
Thank you for Sharon your knowledge everyone its good to know. X

Hey there,

All I can say is that I am sorry you are struggling with all of this. I also have been sick for 2 years with intestinal pains that can be severe at times. I also had the IBS card thrown my way. My symptoms though are not consistent with IBS. I have had tests that have not really shown too much though. I understand where you are coming from, feeling lost and all alone. I know that feeling. It sucks not knowing what the heck is wrong. I hope you doctor can figure out what is going on and help you to manage better... Hang in there.

Ali t said:

Thank you I will see my GP and enquire about the other auto immune diseases. Like yourself my joints are painful however its more my knees and wrists really stiff and painful. It's the constant nausea, indigestion and cramps I just can't coexist with on too f the chest pressure and pain. I just hope I get some answers soon as over the 4 years I've progressively got worse. Although I have regular b12 jabs and iron infusions I still get really tired all the time, not sure if that's a symptom or just exhaustion from it all. I get so frustrated at the ibs and dyspepsia routes even though they have found numerous abnormalities . From what I've read I'm not the only one this happens too.
Is nausea and indigestion a symptom of crohns I've read it can be and also that some people presented with this lower right lump and that's when it was finally detected however presented in upper symptoms with some people.
I get frustrated ate time frames of appointments I only see my GI once every 3-4 months and a second feeling like this is long enough.
Thank you for Sharon your knowledge everyone its good to know. X

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