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03-07-2011, 04:38 AM   #31
beth
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Wow! thanks for all the responses!

I saw my GP the other day and we've done some blood tests which I'm awaiting the results for. Failing that showing anything we can act on he might send me to a neurologist, or someone that can do some in-depth neurological testing to see if I have any obvious deficits.
03-07-2011, 08:29 AM   #32
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I'm very sorry to hear all of you are going through this. Going to the neurologist sounds like a great idea. It worries me to hear you all say these things due to the fact that I already have deficits. I've been to the neurologist and have been diagnosed with ADHD since I was a child (didn't start taking stimulant meds until high school). Now a days there are many non stimulant meds that help your neurons fire properly. --I'll just continue on with my ADHD meds as long as I need to & maybe even up the dose if the need be (I haven't even been diagnosed with crohns for a month).
03-07-2011, 03:22 PM   #33
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Good luck Beth, im sure, as it has happened to me so many times, that your test results will come back very normal! The neurologist sounds like the right place to go, I will be very interested to hear what his opinions are, maybe he can cure us all!
03-17-2011, 12:22 AM   #34
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I thought I was loosing my mind, I have the same sort of symptoms. Fuzzy brain, just not as sharp as high school. This has made college very difficult.
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05-10-2011, 04:38 PM   #35
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Update: I saw a doc at the memory clinic this morning. And did far too well in the tests so they are putting my issues down to depression, because I started anti-depressants recently and have Crohn's. They don't want to see me again.

The tests were ridiculous, like day of week, month, season, write a sentence, remember these 3 words. Obviously aimed at advanced Alzheimers folk than a useful indicator for the likes of us.

Disappointed.
05-10-2011, 04:55 PM   #36
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Aww, thats disappointing, I bet the charged you a heap for it too!

I went to see my dr about my chronic fatigue again, she pretty much said she has no idea and wants to send me to a gastroenterologist, but at $190 a pop I really dont think I am seeing the right person.. My stomach is fine and I havent had a proper flare up in years.

I was thinking of going to see the sleep dr's, I have a very strong feeling that this is all stemming from not enough sleep, I too often wake up totally exhausted after dreaming vividly for what feels like hours, I just dont think my sleep is deep enough and it is just wiping me out.

Id be very interested in hearing about if anyone else has had any experience with sleep dr's
05-10-2011, 05:44 PM   #37
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Wow, so many of us! With me, I thought it is just Pred Head. This thread got me thinking though. my symptoms surfaced just after I'd finished 8 weeks training to do catalogue call centre work from home. I passed the training but did struggle to take a lot of the info in. I worked for a few months on and off, but was really sick and found dealing with angry customers and technical issues to stressful.
Anything that's not a manual task now I can't seem to knuckle down too. And I have to make long 't do' lists for just about everything.
Also, I'll be in the middle of talking to someone and completely lose the thread of the conversation.
Have become incredibly clumsy too and seem to have lost my spacial awareness. Normally these things would get to me, but I feel very 'laissez faire' about them ( jeez I can't even remember if that's the right spelling.)
Will be interesting to see what happens when I get off the Pred.
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05-11-2011, 03:52 AM   #38
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Linnie, it didn't cost a dime (as you say over there). I'm in England, treatment on the NHS is free, well not free as it's paid for out of our taxes.

Helen. Yes I'm afraid it does seem a lot of us suffer some form of fatigue, mental or physical, and about the common thread I can find is the Crohn's. We all take a range of drugs, so it's not directly linked with one. And it's not always amongst those with active disease either. I wish the docs would take it more seriously as I cannot go back into a technical job like this.
05-11-2011, 06:32 AM   #39
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Beth, thanks for starting this thread. My son has this problem too. Fatigue has always been his worst symptom but for the last 8 months he has had a headache too that makes concentration hard. It is hard for his school tutors to understand why he can't just sit and learn. But it is like you said, anything more than an hour wipes him out much more. We've been to neurologist, tried antidepressants (could not tolerate), iron and B12 levels are fine ... His ammonia level is elevated (68, normal is <35) and he does have candida in his lungs (so most likely in his gut too). Somebody posted a Candida link on this thread - thanks.
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05-11-2011, 06:51 AM   #40
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Beth[/QUOTE]


Hey Beth, I am also having trouble. It has improved since i stopped with the Endocourt. Hope it gets better for the end of the month when i write my exams. It gives me a gut ache just thinking about it. Darn.
05-12-2011, 03:03 PM   #41
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Beth,

Like many others here I can certainly relate to the problems you describe.

But try not to let it get you down too much. Of course everybody is different, and perhaps you face challenges I didn't. But I have managed to live a full and active intellectual life, despite Crohn's. Went to grad school (studied ancient Greek and Latin), got my degree, then had a career as a university professor and scholar for almost 20 years, writing, lecturing etc. A decade ago I quit to start my own software development company. Have had to use my brain every day. During all this time I have dealt with Crohn's as well. I'm tired almost every afternoon, more than tired, dead tired. I used to lie down on the floor in my office at the university to nap. There certainly are times when I'm in pain and can't think well - especially lately. I've gotten through hospitalizations, surgeries, etc. And I'm nobody special. I've read lots of similar stories here and elsewhere.

The trick is simply learning to live around the disease, rather than in it. I have always had one huge advantage that perhaps you don't have: I have been master if my daily schedule, to a large degree. When I was teaching of course I had to show up for class at a certain date and time. But a lot of the rest of the day if I was sick I could hide in my office and shut down. If I was well I could work, hard. Now I work at home most of the time and if I'm really sick, I just don't answer the phone (Google Voice takes a message for me) or I don't do development work if my brain just isn't sharp. I nap when I must. This means I work late at night often, if that is when the brain is ready to work.

It might be hard to get a job where you have to deal with people and be really sharp 9 to 5 every day. But if you can manage in some way to stay in control of the rest of your life to a greater or pressed degree, then when the Crohn's acts up, you can roll with the punches without getting badly bruised.

Let me acknowledge once again that your situation might just be very different from mine. Very best of luck to you.

Will

Last edited by Will; 05-12-2011 at 03:49 PM.
05-12-2011, 03:29 PM   #42
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I like the quote a crohnie member had: Crohn's Disease is two words - not a sentence. I'm not going to let it define who I am...
I love this statement!
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05-15-2011, 01:45 PM   #43
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Update: I saw a doc at the memory clinic this morning. And did far too well in the tests so they are putting my issues down to depression, because I started anti-depressants recently and have Crohn's. They don't want to see me again.

The tests were ridiculous, like day of week, month, season, write a sentence, remember these 3 words. Obviously aimed at advanced Alzheimers folk than a useful indicator for the likes of us.

Disappointed.
Beth, I have done tests similar to yours and felt the same way about them. The Neuropsychometric testing feels overly simplistic and doesn't really show how your brain functions in the real world in real circumstances. Take for instance the face test. One of my worst problems is that I cannot remember people's names when they come up and talk to me and sometimes get them mixed up as to where I knew them and sometimes I don't recognize people at all when they are out of context. The face test only tests your ability to recognize faces you have seen before. It does not require you to place them in your memory OR to recall names or facts about the person with the face. It did not show what happens when I am confronted with a face and cannot remember when, how or if I actually know that person.

Brain Fog is associated with several different long term uncurable conditions including: Fibromyalgia, Multiple Sclerosis, Lupus, Diabetes and others. I personally have Crohn's, Diabetes, Chronic sinusitis, Fibromyalgia and have had numerous doctors tell me I have MS, though they have never been able to find it on an MRI (thank goodness!). The MS "symptoms" are hopefully caused by the Fibromyalgia and won't ever become full blown MS.

Anyway - that being said, I am NOT a good person for your poll because I do have conditions that are known to cause Brain Fog. I do have a theory about it, and would like to share it with you.

First of all, chronic conditions affect your entire body - not just the "area" where the problem is. Crohn's chemicals and signals are traveling through your blood telling your body that it is sick and being attacked. This blood flows through every organ of your body, including the brain. The brain has a fantastic strainer that catches most chemicals, including medicines, before it gets in. However, it is not perfect and can be breached by medications and other chemicals. Your brain is being bombarded by the chemicals that your disease process puts off.

Second, one of the things your brain does when you are ill is to make you feel tired so that you will slow down and heal. But, if the process has gone haywire - like with Crohn's - then it is likely (in my theory) that your brain reaction is going to be slightly haywire and you will feel tired and "out of it" due to the faulty disease process. Your brain is reacting to an illness that has gone out of control. The brains reaction, therefore, may be flawed due to the poor information it is getting from the body.

So, you have a body that is fighting an illness (in our case, our own body) and sending distress signals to your brain. Your brain is reacting and making you slow down to heal. But, our illness is so messed up that our brain is getting signals even when we are not that ill. So, we feel tired and out of it even when we shouldn't OR we may be having inflammation that isn't causing other symptoms.

That is my theory. I, too, suffer from much poorer thinking skills than I used to. There are days I cannot type more than a couple of words at a time without making typos and I used to type quickly and accurately. I can't even find all the words I want to use for this post!! I had to use words that I could think of rather than the ones I really wanted to use.

It is a crazy side effect of illness.
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05-16-2011, 11:02 AM   #44
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You all just blew my mind. Here all this time I thought it was just me. I can't remember anything. Not to pay bills on time, what I went to the store to get, what I did two days ago at work. Nothing! I am always forgetting something or everything. Dates and times to events. I am clumsy too. It's gotten worse over the years. I have to write everything down, and then forget that I made a list.
I am also exhausted 99% of the time. I can start something, and just not have the energy to finish. I have a hard time staying on task for anything, even stuff I enjoy.
Currently on no meds. Maybe it is Crohn's brain.
05-16-2011, 12:23 PM   #45
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Amberaut, I blame mine on 'mentalpause'. I figure it's a good excuse, especially due to my...erm...age. It also diverts the conversation when people ask me about my blonde moments. I am sure alot of it is crohns, but who wants to talk about that to a stranger!?

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05-17-2011, 04:41 AM   #46
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Well I am only 30, we all joke that as I get older I get forget to breathe lol. Hopefully sometime this year I will be able to go to the doctor, and maybe I cam get some help.
05-17-2011, 05:41 AM   #47
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So this thread rumbles along still, and I'm amazed at the breadth of the responses.

Will, thanks. I try not to let things get me down. My GP and I have always said in the past I simply don't do classical depression. So I hadn't done anti-depression drugs until very recently. Hubby thinks they are helping, but I'm not so sure. Being in control of my working patterns is tricky with a 9-5 job, and the way I am I know I would struggle to simply function, let alone function well enough to justify the high salary I used to be able to get away with. Or be able run my own company. The couple of years before Crohn's really hit, looking back, were a struggle anyway. I wonder how much of this is simply the body fighting either a real or perceived invader.

Which is where Sunflower comes in. Thanks for the very detailed reply!
I didn't have a face test, but struggle with recognising faces. Whilst I think some folk do anyway, I used to be okay at it, but these days I'm abysmal. If I see someone out of context, a dog walker without there dog say, I'm so often lost as to who they are even tho I get the inkling I should know who they are. Only later can I remember. So the memory is there, I cannot necessarily access it. Latency is poor! I find myself looking for the memory triggers that might help me pull it back. Anyway, I like your theory, it's as good way to think of the processes.

Ambernaut, you're definitely not alone. We have an online diary to keep track of all the appt's and stuff going on in our lives. I couldn't manage without it. One day I'll keep a list of all the lists I should keep. If only I could remember to actually use it!

Terriernut, mentalpause, I like that

Oops. Nearly forgot Dannysmom and Bren. Hope your improving now Bren. I really feel for Danny, I don't think I could cope with school and go through a thing like this.


After the memory clinic I wrote quite a long email to my GP as I had quite a few hospital appointments to bring up to date with - like my broken foot, and gallstones issues! He's going to wait for the clinical letter and then discuss it with the neuropsychologist that suggested the memory clinic. So there may be more to come in this saga yet.
05-17-2011, 09:31 AM   #48
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Thank god I thought I was going crazy, but now hearing other people talking about there mental problems I know I'm not anymore.

College has been a nightmare since dealing with this and what I've noticed lately is that I can't design and build stuff like I used too. Before I could look at something, come up with an idea to make it work and run with it. Now I can't even come up with a working idea and if I do manage to pull something together I'm plagued with indicision all the way through the build process mostly resulting in a ton of half finished projects all around the house. It sucks not being as sharp as you use to be and seeing the look on people's faces when you try to explain this to them and all they think you are trying to do is come up with an excuss as why you suck, sucks.

Hope everyone makes it through there brain fog today!
05-17-2011, 05:33 PM   #49
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Beth, a few months ago I decided to get an iPhone. I figured I work hard and even though money is tight, I love it! I use the calendar alot. I even had to put my nieces wedding in because I kept forgetting the date. And it has a note pad on it, I use for work and everything else. Since I always have my phone I can make my grocery list as I think of it lol. I go about once a month to a bulk-buy store and it's really easy to forget stuff if I don't do this. One thing I never forget, toilet paper!
05-17-2011, 09:23 PM   #50
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Wow, interesting. My son has the crohns diagnosis, but I was diagnosed with ADHD and take Adderall as an adult, I had severe brain fog just as you describe until I started on teh adderall. The really interesting thing is, they have been trying to diagnose my son Brandon with ADHD since he was 6, but he doesn't meet the criteria. The other interesting thing is in his colonoscopy report it shows lymphonodular hyperplasia. A connection lies with this and children with Autism spectrum disorders and ADHD. So I am not surprised that something connects Crohns and brain fog.
The other interesting thing is several years ago I had chronic fatigue as a result of the epstien barr virus (a form of mono type disease). The doc put me on Wellbutrin an antidepressant because it is a stimulant and gave e the energy I needed to overcome the chronic fatigue. I stayed on it for about 6 months. Worked great. Finally about 9 months ago I succumed to my ADHD symptoms and went on the Adderall, worked wonders for me. I am trying to manage Brandon's ADHD tendency's withut meds, because he has low weight and Adderall cause appetite supression. Great for me not so great for him.
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10-16-2011, 09:12 PM   #51
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I've had a lot of memory lapses, much like what has been described already. It's very frustrating. I've also found I have trouble at times locating the direction a sound is coming from.

Is it vitamin deficiencies or brain inflammation or some other extra IBD side affect?

I ate a big plate of liver Friday to up my vitamin B. Luckily I love it!

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10-17-2011, 01:18 PM   #52
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So I guess my question is: do you struggle to concentrate properly, or manage to forget simple things from one minute to the next, even tho you are in remission? Have any of you changed career post diagnosis, why?
Reading many of these threads, I am yet again struck by how many of the descriptions could be about me. The foggy brain, the days when you cannot remember anything, the panic in technical interviews when you cannot recall simple things that you know so well, the broken decision making process, the incoherent sentences, both written and spoken. I have experienced all of that.

And yet... I still managed to get a BSc and a PhD and hold down a pretty hardcore job in software development, so don't give up on your career if it is what you enjoy doing, you will get through the bad days.
10-17-2011, 01:34 PM   #53
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Hello Beth,
I have had concentration issues as well!
I thought it was the large dose of steroids i was on, but i have been off of them for a while and I am still Ms space case.
I work as a loan officer, and my job requires a lot of math and common sense. So you can imagine how embarrassing it is when i can not think properly or as quickly as i could when they hired me.
Im actually scared of switching jobs for fear of not knowing what i am doing.
Until now i thought i was the only one with memory and concentration problems.
Best of luck to you in the career world!
10-17-2011, 02:54 PM   #54
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Interesting comment about Adderall which is basically an amphetamine and therefore will affect dopamine, serotonin, and norepinephrine levels. I suspect that amphetamines would be an instant cure for the problems people are describing, but it would not be a very healthy solution!
04-07-2013, 06:32 AM   #55
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This is very interesting, I was diagnosed with UC in 2004 and last week my diagnosis was changed to Crohns due to biopsy results of recent colonoscopy, plus the fact that I finally thought to mention my mouth and genital ulcers to my GI... I never thought the genital ulcers would be connected to the disease until last week, and it just occurred to me now to check if my memory problems could also be a symptom. Since 2004 I have surely but steadily felt like I'm getting 'dumber'. I used to have a fantistic memory, one of my strengths was my listening skills and memory recall. Since diagnosis, I have been getting worse at listening (blanking out during conversations), have difficulties finding words andjust generally forgetful/scatterbrained. I am also aware of the 'fogginess' due to steroid treatment, but this is different and I find isn't contained to flare ups (unlike fatigue for me). Due to the discussion on this forum, it really sounds to me like this could be an additional symptom... and here I was Googling dementia, thinking it was that (at 31 yrs old!) Like others it has affected my confidence at work, not to mention social situations. Will be mentioning this at my next GI appt, but won't hold high hopes due to others experiences, but you never know... would be interested to hear more peoples stories, and if those that posted in 2011 had any success in finding answers!
06-13-2015, 07:51 AM   #56
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so like, azathioprine DOES Affect thinking/??
12-07-2015, 07:26 PM   #57
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Peanut butter: god nooooooo! That hurts!

This is the thing Joan; most of the time I feel really great. Whilst I can't eat what I like, I have to be careful, but my guts don't play up without being provoked. Last blood tests middle of last year were fine. Yet I struggle with memory - WTF did I do last week?! And concentrating for more than an hour leaves me 'overwhelmed' - tired, easily distracted, brain clouding over/blank.

Ho hum.

I wish I could quantify this function loss, or change, and do something about it! When I find it happening - the not being able to do something, I feel down, and annoyed - the old 'why me', which I thought I'd got over!
Peanut butter can be good for you, but be sure to buy SMOOTH peanut butter (not crunchy), and which has NO DAIRY in it. DAIRY is poison for us!
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12-07-2015, 07:29 PM   #58
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so like, azathioprine DOES Affect thinking/??
Azathioprine has many nasty side effects, IMHO it should never be used unless the patient has failed all other meds and it truly is a "last resort".
12-07-2015, 10:58 PM   #59
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flavonoids found in blueberries can help cognitive functions so does physical activity. I eat frozen blueberries , half a cup or more a day.
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12-14-2015, 01:40 AM   #60
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So when I lost a lot weight, before my Crohn's diagnosis, I also seemed to get more stressed, loose confidence and I struggled to maintain concentration. I've been hoping that these would come back now I've been in remission for some 6 months or more. Except I went for a job interview (technical role) last week and I've been really wiped out since, my guts have been playing up with little or no provocation. As well as silly things happening like failing to open a door properly before walking through it resulting in a bruise on the forehead! Or falling off the back step because I failed to stand on it properly. The interview itself went badly as I really couldn't pull the basics of my trade (software engineer) from the depths of my memory, despite doing odd projects to try and get me back into the swing of things.

So I guess my question is: do you struggle to concentrate properly, or manage to forget simple things from one minute to the next, even tho you are in remission? Have any of you changed career post diagnosis, why?

Beth
Beth, your post is really enlightening, I was initially worried about lack of concentration and difficulty focussing on things / ideas for any length of time. But after reading your post I can see other things that I had dismissed as getting older, things like, as you say, failing to open a door properly before walking through and walking into it! (twice I have walked into a door so hard that it knocked me to the floor. Or other things like injuring myself with a tool because of simple lack of focusing on doing things correctly or safely.

I was also in IT, (project management, previously software engineering), and after surgery (I am now in clinical remission) had problems concentrating on simple project management tasks. I recently took a redundancy as I was making more mistakes in my work as time went on, despite trying realy hard to focus, and my boss was noticing. Fortunately for me I was at retirement age and had a good amount in my superannuation (eg: 401k).

All the posts about this issue show that it is a very significant problem for the Crohns/UC community which is being totally ignored by the IBD Medical / Mangement professions. This has to change - who's to say that it is not affecting people's driving abilities?
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