Crohn's Disease Forum » Support Forum » Undiagnosed Club » Going insane. Calm voices of reason needed.

11-15-2013, 02:09 PM   #1
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Going insane. Calm voices of reason needed.

Iíve just joined the forum and Iíve put my story here because Iím undiagnosed.

Iíve been ill for over 4 years now. My story is epic so Iíll give the gist.

I started with oily, loose stools up to 4 times a day. Ferritin at 20. Vitamin D at 19. Improved to 72 on calcichew. Couldnít get ferritin above 29 so doctors gave up. Normal B12, folate on lower end with one dip below normal but came up again. Body Mass Index fell to below 18. Low epigastric Ďpainí, although more like there was something huge lodged there and made me feel sick when it was pressed (still does). Celiac negative, abdominal ultrasound negative and all other tests refused.

After 18 months of doctors not having a clue what to do and doing nothing more than sighing when I suggested a gastroenterologist, I was diagnosed with Chronic Fatigue Syndrome and referred to a psychiatrist. I refused to accept this owing to the fact that ferritin below 50 is associated with fatigue. My ferritin was down at 20 again and vitamin D had fallen to 33.

I saw a private dietician for a couple of years because the NHS refused one. I never saw the psychiatrist as I moved abroad. We did food exclusion and found I have a nasty reaction to dairy. Removing that managed to get rid of the oil in my stools. We worked on my diet, including putting it into a computer and producing a graph of my entire intake. All my vitamins and minerals are over the daily requirement. I was also still taking multivitamins. In two years my ferritin went up to 24. She said enough was enough and I needed to see a gastroenterologist for absorption tests, etc.

My GP threw what can only be described as a wobbler. Apparently dieticians shouldnít tell doctors what to do. But she did write me a referral after a significant argument. Found out at this point that I have calcium deficiency. My dietician has me on zinc supplements because sheís convinced Iím low in that as well although I canít get it checked.

Saw GI a couple of weeks ago. He says I donít have malabsorption but heís going to do colonoscopy and endoscopy to check for Crohnís.

Iíve still got the lower epigastric pain. Burning pain where I think my transverse colon is, a burning pain half way down where my descending colon is. These come on after bowel movement. The pain is always in the same locations. Stomach pain after eating and mild reflux. Occasional stabbing pain in my right lower quadrant and round my belly button and rectal pain at times. Bowel movements are mostly only once a day, but can be up to 4 times, but then again Iím hardly eating anything because of the nausea and I feel full up so quickly. Everything feels swollen.

Apparently my bloods are normal. Luckily the GI accepts that they can be with Crohnís.

I still feel like Iím being made to feel itís all in my head. I even got asked if the antidepressants I was on last year made my stomach pain go away. Iím doubting myself. Iím worried nothing is going to show on scopes and theyíre not going to pursue. My dietician insists that something will show because something is causing my deficiencies. Iím losing weight again. My hair is falling out. I used to be a Registered Nurse and Iíve worked in GI. I know what is going on is wrong. I just feel powerless to do anything about it. If I didnít have my nursing background and couldnít have afforded a private dietician, I dread to think what could have happened.

Iím trying desperately to stay level headed. Iím failing miserably. Four years of doctors screwing with my head is taking it's toll.

So that's my cheery story!
11-15-2013, 04:19 PM   #2
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Essieluv's Avatar
Oh my goodness, you poor thing! I am so sorry you have been sick for so long without any help from doctors. Doctors like to throw around the "it's all in your head" aspect. But for most people, that is far from the truth. It can feel horrible when doctors tell you that, but you must push through it. What you are experiencing is not normal and healthy, and I for one believe you! Try to keep your chin up and keep hoping. I'll be thinking of you and sending you prayers. Keep me updated, yeah?
Meds that failed me: Remicade, Humira, Cimzia, Entocort.

Waiting for a cure!
11-15-2013, 04:54 PM   #3
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Cat-a-Tonic's Avatar
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Hi AnotherCatLady, welcome to the forum. A few thoughts about your post - firstly, what antidepressant were you on and what dosage? I ask, because certain antidepressants at lower doses can actually help with digestive issues in some cases. Things like Amitriptyline and Notrtiptyline particularly. So if you were on one of those, they likely didn't put you on it because they thought it was all in your head, it is a more legitimate treatment than that. It sounds like it didn't do anything for you though? And frankly, I think that meds like that tend to help IBS-type symptoms more than they help stuff like IBD/Crohn's/Colitis. For what it's worth, I was on a low dose of Amitriptyline myself for about 3 years and have just switched to Nortrtiptyline - neither do much of anything for my guts either. But long story short, it's not all in your head, they were likely just asking as certain antidepressants can have a positive physical effect on painful guts.

Another thing, I'm presuming you told your GI about the oily stools that you had before giving up dairy? Oily stools usually mean fat malabsorption - since fat melts at body temperature, it looks like oil in the toilet. So that strikes me as odd that your GI said you don't have malabsorption (maybe you don't now that you gave up dairy, but you certainly did by the sound of it). I'm glad at any rate that he's going to do the scopes, and I hope they get you some proper answers.

And finally, don't let them toy with your head like this. You are clearly legitimately ill from what you've posted, it is NOT all in your head. A lot of doctors, if they can't figure something out right away (or if they can't be bothered to try to figure something out), they'll wrongly try to lay blame on the patient, like it's somehow your fault that you're ill. It's NOT your fault and it's NOT all in your head, so don't stand for treatment like that! Keep advocating for yourself and fighting for real answers. Hang in there and good luck with the scopes!
11-16-2013, 04:36 AM   #4
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Essieluv, thank you. Your message is really lovely. It's given me a little pick-up.

I was on Citalopram 20mg and it was for depression. Everything got on top of me. I honestly don't know if it helped because I was in massive denial about being ill. I think part of me still is. But if they can help with some gut symptoms I can see why he could have asked it. Ok, that's relieved me a bit.

Fat malabsorption. Absolutely! It was the first thing. Oily stools plus vitamin D deficiency. I also had dry eyes and progressed onto night blindness (vitamin A) and excessive bruising (vitamin K). I even managed to hit a phlebotomist with my blood because it just spurted every time I had a blood test. Doctors wouldn't have it. After the CFS diagnosis I went back to the GP about this. He put his hands together in that mock caring way, leaned into me and said he appreciated I was trying to find answers but I was best seeing the psychiatrist. My dietician picked it up and worked with it.

I keep thinking about the GI. He seems more thoughtful than the other doctors. My GP who referred me seemed a little stressed when she rang me back with the calcium deficiency. You that tone of voice doctors have when they realise they've made a mistake. The test was done after she sent off the referral. So I don't know if she wrote a dismissive referral letter because she'd been quite nasty in the appointment. All the GI had was a mess of notes, a wrong diagnosis, and potentially a snotty letter from a GP. He has a small period of time to assess what is actually going on. That's the hopeful bit of my brain anyway. Unfortunately the other parts of my brain are on negativity overdrive. He does have a copy of the dietary analysis which he wouldn't look at in the appointment but did ask to keep. Maybe he's read it.

I've been reading other people's stories on this form and I've seen people going through similar. It's horrible to see what some people have to go through.

Thanks for your comments. Really, really appreciated.
11-16-2013, 05:06 AM   #5
Join Date: Nov 2013
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I've just thought. The lower pain that I'm experiencing now only started this year along with the severe nausea and episodes of being knocked out with flu-like symptoms. This was all before I came off the anti-depressants.
I have to wait for the scope.

Dear brain, calm the heck down!
11-16-2013, 11:07 AM   #6
Join Date: Oct 2012

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∑ Stoma
Keep strong. An awful lot of us have had to put up with many of those "it's all in your head" doctors. Personally, if I know a doctor isn't taking me seriously, I don't see him/her again. When a doctor has made their mind up that there's nothing seriously wrong with me, or that my problems are psychological, or whatever, I look on it as a lost cause. Doctors can be very arrogant - their attitude is difficult to change. On the NHS you are always entitled to a second opinion, and if your symptoms worsen or you develop new ones, you're entitled to a new consultant referral. You're entitled to see a different GP, and if you can't find a GP you like at your local surgery, I believe you can register at another surgery instead.

Having an illness like this is hard and stressful enough as it is. I learned a long time ago that a doctor's appointment should not be a battleground. There are good doctors out there, there are doctors who will take you seriously. You have to persevere until you find them.

I used to think that if I got diagnosed, I wouldn't have a problem with doctors believing me anymore, but getting diagnosed (I actually have more than one illness, so I've been through the diagnostic process a few times) was a bit of an anti-climax. Some doctors still cling to the fact that my symptoms are more severe than my objective test results would suggest, so therefor there's something mental going on... etc. But I now see some wonderful doctors who take me at my word - which is what doctors should do. There has to be trust in the doctor-patient relationship, and it has to go both ways.

Be prepared that if you get tests done, you may have to keep strong through some negative results. Don't feel down if answers are not forthcoming. You know something's wrong - if the tests don't find it, it's because the test was not the right one to detect it, it doesn't reflect on what your symptoms are, no matter what any doctor says.

A few points: personally I find the location of pain can be misleading. Pain can be referred, meaning you can feel it in a location that doesn't match the source of the pain.

Also I'm not sure how much the amount you eat determines the number of bowel movements you can have. When you have diarrhoea, you can get a large volume of stool even if you've eaten very little, as most of it is liquid that didn't get a chance to be absorbed whilst going through your digestive tract.

I'd advise you not to get too hung up on needing a diagnosis. Make sure you don't put your life on hold, as testing can be a long process. Don't doubt yourself. And don't put up with doctors that make you feel bad. I know what it feels like to feel powerless, but you have the power to choose if you see a doctor, and if that doctor is unhelpful, you have to power to choose not to see him/her again.
11-17-2013, 05:38 AM   #7
Join Date: Nov 2013
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Thanks. This is actually a new hospital that I'm at and the last one does have a horrendous reputation. I think I might be in Ninja mode with doctors now. They ask a question and I automatically presume the worst and chop them down. Turns out it was a genuine question. He listened to my heart during the consultation and my actual first thought was he's doing it to see if it's racing and check if I'm lying. I mean duh! A doctor checks your heart. Gosh, that's suspicious.

I'm at a new GP surgery as well. I've been through all the female doctors who I've not had much luck with. A neighbour has recommended a different GP to me so I'm going to go book an appointment with him about the deficiencies. My calcium is due for rechecking and I'll see if I can get a trace mineral blood test. I'm trying to manage supplements on my own without any idea of what my levels currently are. If I mention self-medicating and Crohn's it might move things along bit. I've got a bald patch appearing and my skin is grey. I look like death warmed up.

Interesting about the diarrhoea. I had wondered about that. I shot out of bed this morning and passed a huge amount of liquid stools and then it felt like someone was power drilling through my intestines for about 10 minutes. But fingers crossed that's it, poo-wise, until tomorrow morning. Pain comes and goes.

I'm thinking more logically now. You have helped. Thank you so much.

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