• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Concentration and memory issues

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
 
Hi Beth:

Having lapses in memory and concentration has been one of my biggest battles (and scariest). When I went into remission in 2004, I returned to work (I worked as a forensic psychologist) and in my excitement, decided to enrol in a PhD program part-time. I had the worst time of it. I had my partner read/edit one of the first paper's I wrote and the response was "Wow, I've never seen you work so hard to write such a crappy paper." Not only was my paper grammatically poor, but it was absolutely nonsensical; sentences had no flow, arguments did not relate, there was no coherency or depth to my paper. It really scared me because I'm not very good with my "hands" and my brains, such as it is, is all I really had to rely on.

As I began to pay more attention, I realized that often in my speech, I didn't make a lot of sense, couldn't remember basic things, had difficulty articulating a lot of simple things let alone more complex ideas.

I've been in a 'severe' flare for the past three years without a break and am heading towards surgery which I hope will take me out of this place and put me in remission. And when I'm in remission, no, I will not be returning to counselling and will have to rethink my career to be able to incorporate doing something that doesn't require a lot of 'face time' with people. I want to have the flexibility to be able to work so that I can go to the bathroom without having to excuse myself from a client, or to be able to work from home. I don't know what that is yet, but a career change is definitely in the offing for me!

I have some of the physical symptoms you speak of, but I also have MS and not getting on the stairs, etc. is part and parcel of that disease.

I'm not sure if I can offer you anything more tangible, but I do have some understanding of what you're speaking of. In my case, I've attributed much of the brain misfirings to malnutrition despite taking a whole lot of supplements.
 
Interesting, thanks. Whilst I'm a 'thinker' I hate writing documentation (find me a software engineer/hacker that like it!) and never been very good at it. But I could tell if I was writing crap and edit, edit, edit, repeat/etc until it made sense. However the last few months of my proper job, 3 years ago now, your comment about the coherency of your paper rings soo familiar. Anything I tried to write at that time was just incoherent and anyone proof reading my doc's used an awful lot of red pen! I picked out the writing point as it's probably easier to quantify what has happened, rather than a subjective 'I used to hack code much better than this'.
How is your decision making?

I'd also be interested in hearing from anyone who does not think they have any 'brain function' issues post diagnosis, who have carried on in a technical field without issues.
 
I am not sure where I stand remission wise, I have very few bowel symptoms at the moment, but still 'don't feel right'. I get a lot of fatigue, and I have also noticed cognitive function problems. For example, I make typos, or spelling mistakes a lot, and fail to pick them up (once upon a time I would have always spelled words correctly in the first place). I even confused their and they're the other day, which is a personal bugbear of mine, and something which I never do. Fortunately I work with young kids, so even in my confused state I'm better than they are! I have gone part time though, which helps because my concentration is better in the morning.

Have you had b12 and iron etc checked recently? As it can be a sign of deficiency (I was anaemic a while back, and had iron tablets, I feel like I have gone downhill again since finishing the course, and am going to ask my doctor to check with my next set of bloods).
 

ameslouise

Moderator
I feel dumb and not nearly as quick as I used to be. At my last job, I made tons of mistakes doing routine things I had done for years. I used to joke that I had pred brain, but maybe it is Crohn's brain....
 
These cognitive issues are so embarrassing, especially in the workplace!

My decision-making is unreliable. Part of it is that my brain feels "clumsy." I'm not sure how to explain it, but it feels like my brain stumbles where, in the past, it would have worked much more smoothly. In terms of decision making, I also find I'm either overly impulsive or far too measured and "scared". This leads to second guessing and using others to bounce ideas out much more frequently. In the past, I would always make fairly well thought out decisions, usually on my own, and although they weren't always the right decision, they were the best decisions I could have made at the time.

I hope you can get some good answers from those in the technical field---I'm filled with envy for those who are technically inclined...how I wish I had even the remotest hacking skills. My days in bed would go so much better...! :)
 

Astra

Moderator
I'm more sluggish than brain dead, or with brain fog, fog is what I had on steroids.
So this why I'm changing my diet and chuckin out the carbs and starches and bread.
Really hoping the veg and fruit is gonna wake me up!
 
Hi Beth,

I certainly understand what you are saying. The last few months in particular have been very bad as far as concentration is concerned and I've made a lot of mistakes, professionially and personally. This is despite thinking that I've double checked things. I put it down to the heavy duty pain killers like Tramadol initially, but I seem to still have some issues despite not having taken them for weeks. I wish I new what the answer was!

Mark
 
Wow, Crohn's brain, brain fog, sluggish yup that's a good description. I am not alone. Which is both a good thing, and bad. Sometimes I think I'm wanting to use it as an excuse to do something different (career/job wise) but aren't brave enough to just admit I want to do something different and get on and make it happen. Hence I mentioned decision making: which is absolutely crap. Everything from how to go about a little software hacking project, to what to do about Life. It doesn't help I'm out of a job and so have time to faff about rather than get on and do. But I used to make decisions, weigh up the pro's and con's with a clear head and go for it. Now I just seem to still have a head full of mush, and prevaricate.

I haven't had my iron levels checked recently. Last time they were it was borderline okay and nothing to do. I've been having a lot of toast and marmite which has really helped: I feel a lot better in myself if I get a regular 'dose'! If I have porridge of a morning after a few days I'll feel down, more tired, irritable/etc. So I feel I'm on to something, despite it being very subjective. I'd munch vitamin tabs but they all contain maltodextrin as a filler which I seem to be very intolerant of.
 
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!
 
Sorry to say this, but I'm glad that I'm not the only one :)

My wife and family started loosing hope in my concentration with anything they are saying, oh and of course i have to ask people to repeat themselves once or twice before i actually absorb what was said :(

Its tough sometimes, specially when i compare myself to the old days when i was the exact opposite :(
 
Aye, you're not the only one Haytham, sad as it is not to be unique.

Anyway: I sent a long email to my friendly GP this afternoon, which he replied to and suggested I do make an appointment for a physical exam and basic blood tests. So I booked that for a fortnights time. He said just because it was subjective didn't mean there was no pathology and no treatment.
 

Terriernut

Moderator
Beth, I used to be in the technical field. I left in 1997, the year I had my first flare as a matter of fact! I was the Data Security Manager for Walmart corp offices. Then I went into sales and have been there ever since in one form or another. (all over the world, now in UK) I didnt have another flare up until 2009, and my most recent in Nov 2010 which led me to surgery and a temp bag. Here I thought my brain fuzzies were menopause, aka mentalpause, but now I wonder! Certainly stress and depression cause these symtoms, but our inability to absorb nutrients is also a contribitor no doubt!

Please keep us posted on your journey, I'm sure there are many more on this group that have the same issues as we do!!! I'm taking multivitamins and iron supplements. But I haven't been tested for vitamin difficiencies, and I think I will have to be checked!

Misty
 

Astra

Moderator
Hiya Beth

Here's something about Candida Albicans causing brain fog http://www.candidablog.com/why-candida-albicans-make-us-sick.php



and also have you considered Meniere's? You've probably not got atypical symptoms but here's an extract of an article on it.

'Some, perhaps many, but not all, patients also report, anecdotally, forgetfulness, memory loss, feelings of confusion, disorientation, and/or sensory overload. Many patients with chronic (long-term) medical problems experience some form of this condition. "Brain fog" is a term used by Meniere's Disease patients. Patients with other medical problems use other terms for the same condition. There is no authoritative source that documents "brain fog," and brain fog is not a symptom of Meniere's Disease.'

Another one is Lymes
http://www.thelymelady.com/lyme-disease-brain-fog.htm

hope you get some answers soon
xxx
 
Hi Beth

Omg you have describe exactly how I have been feeling the last 6 months. Been wondering where my mind has gone too. I work as a residential draftsperson and do calculations to work out if a building will stand up etc. I mostly do complex jobs and have noticed recently it's taking me twice as long to do the job. Also notice I second guess myself and the info I provide builders and forget simple things or get confused easily. Also the writing thing is the same and recalling info I'm hopeless at. I had put it down to being recently dx with arthritis and also not getting enough sleep that I was losing my mind but now wonder if it has something to do with having crohns or a chronic illness. I have considered if I will be able to cont with my job in the future as I'm struggling so much to keep up with the technical side of it. I have even been told by my boss that my work is starting to slip even tho I should be improving as I'm starting to get my health under control again.
All of this isn't helping with my stress levels either and I have been put on anti-depressants to help me.

Thanks for sharing Beth as it seems a lot of us struggle with brain fog and it's nice to not feel like we are alone!
 
Well I went to the GP today to discuss my constant fatigue, concentration etc. I have already been tested for diabetes, thyroid, vitamins. My anaemia has been treated. ESR was down to 8 I think. She says in the absence of anything physical, she thinks anti depressants might help.
 
I've been flaring for this past year and I think my brain was flushed with everything else.

I've always known that I've lost a lot mentally due to the meds over the years, but this past year has shown me that it's not just the meds.

The last time I got out of the hospital (Jan 1) I kept losing chunks of time and conversations. We chalked it up to the morphine and that didn't last very long.

But my overall cognitive state has diminished this past year and it's not due to the meds. A couple times everyday I have to ask my SO or the kids what we'd been talking about. I just blank out. The words come in, but then make no sense.

I think getting back on B12 shots has helped a little, but not enough to make a huge difference. I actually didn't know this was part of Crohn's Disease until I read it somewhere last week, but I couldn't tell you where I found it.
 
It has to be a crohns thing, Ive been feeling constantly fatigued for the last 4 years with no answers from my GP, Ive had so many blood tests with no results that can point my anywhere and its so frustrating!
It feels like im just constantly living for sleep even tho I get a lot of it, my job isnt stressful as I work for my dad but I am a complete scatterbrain, I can never remember where I put anything, I can never recall what im told to do at work and have to be told 2 - 3 times before it sinks in, its just a constant struggle :(

I havent been on any meds since 2001, I eat very healthily, I take vitamins everyday and get B12 shots every year, no Dr ive been to can help me or really takes me that seriously :ybatty:

So no, your definitely not alone on this one, I feel your pain
 
Linnie- I was in a similar position, I have been fatigued since before I became ill. Now Crohn's is under control, all bloods normal, etc etc and I was still sleeping 8-10 hours a night and needing a 1 hour + nap every afternoon (and sometimes falling asleep again watching TV in the evening). My GP has put me on antidepressants. I don't think I am depressed (feeling down because I'm so tired, yes. Depressed? No), but she explained the chemicals in our brain can effect more than just our mood. I did my own research and found that low serotonin (the chemical my antidepressants affect) is associated with unsatisfying sleep. To cut a long story short, I have been taking them for 10 days, and seem to be settling into a routine of sleeping 8 hours with no nap. I guess time will tell if it continues, and whether my memory and concentration improve.
 
Well im going to see my Dr again this week so I will ask her about the serotonin, I would happily take antidepressants if it means getting my life back on track! Is there any way of testing for low serotonin? Or is it just guess work with a bit of trial and error?
 
I haven't seen my GP yet, apt is this wednesday.

Some days I convince myself it is the Crohn's. However, other days I have a niggling wonder. A friend of mine is also suffering concentration problems, similar but not exactly the same as me... I've forgotten the subtlties of her symptoms, but suffice to say it's similar. Something we have in common is having been on HRT (oestrogen) for some years. In my case since 1993, which is long before any hint of my Crohn's. She has no IBD or other suspicious symptoms. Having done some searching on memory and estrogen there does appear to be some links with the brain and it's inner workings. So I wouldn't be surprised if there was something in that too.
 
I am having serious cognitive issues. Spelling errors, memory loss, never finding the right word.... It's so frustrating. Friends, family and coworkers have all noticed. As a teacher, it's emotionally excruciating at times. I'll be at the board and suddenly forget a formula that I've taught for 20 years. I've tried vitamins and sleeping more, meditation and exercise, but nothing is helping. I've only had Crohn's for a year and if I keep declining at this rate, I'm expecting senility to settle in any day now. Doctors just don't seem to understand the impact of these problems, or maybe they just don't have an answer.
 
I am still waiting on an official diagnosis for Crohn's, but its highly likely thats my condition. Anyway, i'd like to chip in on this on as i have noticed a massive change in my memory and concentration over the past yar.

My short term memory seems to have taken the biggest hit. I have lost so much trust in my own ability to remember things that i am taking notes almost on a daily basis, either on my phone or jotting down things on paper.

Often i'm in a conversation, the person is talking straight at me, and there comes a moment when the last sentence they've spoken does not register with me. Its my moment to reply something and i find myself asking 'what?'. Its very embarrassing and can be problematic at work. I dont recal ever having this problem in the past, but now its happening very regularly.

I'll be mentioning this to my GI in two weeks, though i'm doubting she'll focus much on this, if at all?
 
ALI - You are pretty much describing me to a tee! Let us know how you go with your Dr, I have complained to mine every time about being tired, I havent mentioned the scatterbrain.. one step at a time
 
this hits home for me loosing concentration not remembering clearly what I did on on a project the day before. I worked in industrial electronics and controls before I retired last month. I have chrons and am now on humira. In addition to the chrons I have hepatitis C and cirrhosis with end stage liver failure. During my testing with the liver specialist I did a psychological test for Hepatic encephalopathy for which I showed mild symptoms of. This diagnosis gave some explanation of my memory loss and lack of concentration.
 
I'm not sure if this has anything to do with my crohns or not but I too have alot of problems concentrating somedays and find the easiest things in the world difficult. I also have pretty bad memory loss problems, alot of things just kinda dissapear especially when I get nervouse or stressed out.
 
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.
 
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).
 
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! :)
 
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.
 
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.
 
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
 
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.
Helen
 
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.
 
Location
NY
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.
 
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.
:yfrown::yfrown::p
 
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:
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!
 
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.:p
 
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.
 

Terriernut

Moderator
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!?

Misty
 
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.
 
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.
 
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!
 
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!
 
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.
Trina
 
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!

Sent from my ADR6350 using Tapatalk
 
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.
 
Location
Chicago, IL
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!
 
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!
 
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!
 
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!
 
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?
 

fuzzy butterfly

Well-known member
Hi i feel like im in a fog alot. My head just dont wana work sometimes. Memory not good n i seem to kinda shut off into a daze. Not on meds n in remission but still!!!. Maybe its due to the major fatigue i suffer or just the crohns. Im 53 so maybe old age too lol. 💕hugs to all
 
Autoimmune diseases can have a number of mental related disorders.

I was having infrequent brief periods of vertigo during active crohns. In the past year while I had crohns under control, haven't had ANY vertigo.
 
I've had the brain fog going on since 2011, sometimes it is worse than other times. It seems to be my short term memory mostly and I'm a fair bit more clumsy than I used to be. I chalked up to lack of sleep starting in 2011 when I was diagnosed with rheumatoid arthritis, I couldn't get more then 2 hours of sleep at a time. My crohns diagnosis didn't come until earlier this year and the memory and clumsiness issues didn't worsen when the crohns symptoms starting to appear.

I'm thinking it is more of an autoimmune disease thing opposed to just a crohns thing. There is so much going on when your body is fighting itself. We lose sleep, we don't always eat as well as we should, I don't exercise like I should, there is the meds that make me tired. After both my diagnosis my GP asked me if I needed anything for depression so I guess he figures autoimmune disease and depression go hand in hand.
 
There are so many possible reasons for memory loss before we even get to Crohn's it gets overwhelming. I've had trouble with memory for years. I'm a musician and when I started college, learning a new song was impossible. I also had Leukemia when I was 13 (caught within hours because I was in he hospital for Crohn's) I know some of the chemo I had was known for memory loss and that one was injected into my spinal column going to me brain.
All of that being said, memory loss, brain fog etc can be caused by stress , which we have no shortage of while living with Crohn's [emoji3]. Other possibilities can be dehydration, also common for us. I think when B12 is low that cam be a contributing factor. Don't forget lack of sleep as well.
Then there's the big one for me-depression. I've suffered from a pretty bad depression from age 15. I'm 46 now and I think the shrink has found a cocktail that is making it easier to deal with life.
My advice is to see your internist and get some bloods done. That cam help factor out some stuff. I would also say that fatigue and brain fog are probably related.
Be proactive and talk to the doc. I have had this disease for so long I kind of gave up being my own advocate and just did what I was told. I've had a rough time lately and so I'm really trying to advocate for myself. It's hard to change my ways but I question whether my GI is invested in my problems anymore and a, trying to be as proactive as possible. Good luck!
 
I've experienced these brain fog symptoms that have lead to work or other activities taking much longer to complete. What does this mean for my career ladder? I've thought about new career paths to better control my schedule, as noted above.

Has anyone made that job transition? How?

Changing jobs to better suit my current abilities is a a deflation of ego and wallet - this loss is hard to emotionally cope with, too. Has anyone had a career counselor of sorts help with this process?

:dance:
 
Interesting. I had labyrinthitus for 4 months then 2 months later I had my first Crohn's flare.
Brain fog is awful. I've never really got my memory back like it was before since being on Pred for 6 months. Dunno what to blame it on - the meds? the anaesthetics for various procedures? or just the rigours of dealing with a chronic disease? Also, I'm now 56 years old.
My head's a mess at the moment. Flaring after 3.5 years remission and suffered a Portal Vein Thrombosis and am on Warfarin which really freaks me out so anxiety levels are through the roof and anxiety leads to................brain fog. AAArrrgh.
 
I had a pulmonary embolism five years ago, and have been on Warfarin ever since. Apparently, people with Crohn's have a higher incidence of DVT's. I'm more cautious and careful, but other than that it hasn't really impacted on my life. I gave up my stressful job because of Crohn's, and that helped tremendously, but I took a big cut in my pay check.
 
Hello Tuff and thanks for the reply. Do you think you will be on Warfarin for life? My docs are saying maybe only 3 - 6 months for the Warfarin, but it will depend on the blood test results at my next appointment. I am slightly less freaked out about it now - except when I am in taxis or trying to cross the road!
I live in Yangon in Myanmar ( Burma ) and I'm a teacher, but I may have to make some life/work changes too.
 
Is so good to read this posts and find the answer to my brain problems, I almost had gone to a doctor to test for alzheimer's.

I have all this symptoms, brain fog, difficulty to think and remember everyday words.

I'm a software developer, and everyone that work with his mind perceives this problems. I wanted to immigrate from a awfull country to a good country to have a good life, but with Crohn's and all this problems... I'm stuck here.

It's such a blow of life, you are in the apex, and life hit you in the shins with a aluminum baseball bat and breaks your legs.
 
Hello Tuff and thanks for the reply. Do you think you will be on Warfarin for life? My docs are saying maybe only 3 - 6 months for the Warfarin, but it will depend on the blood test results at my next appointment. I am slightly less freaked out about it now - except when I am in taxis or trying to cross the road!
I live in Yangon in Myanmar ( Burma ) and I'm a teacher, but I may have to make some life/work changes too.
I was told I will be on it for life. There are other blood thinners that you don't need to go for monthly blood tests with, but they are $100 a month, which I can't afford. I try to get rid of as much stress in my life as possible. Now that I'm in remission, the brain fog has gone too. I wonder if it comes with inflammation?
 

fuzzy butterfly

Well-known member
Iv been in remissoin for over 2yrs n my brain fog seems to be getting worse. Thinking is becoming harder and my concentration well thats going fast outa the window. I kinda function on auto pilot most of the time 😕
 
Last edited:
I was told I will be on it for life. There are other blood thinners that you don't need to go for monthly blood tests with, but they are $100 a month, which I can't afford. I try to get rid of as much stress in my life as possible. Now that I'm in remission, the brain fog has gone too. I wonder if it comes with inflammation?
I'm sure I read somewhere that when you are flaring, your body diverts all it's attention to fighting the disease and its symptoms, so I guess that will include the brain too. It's great to hear your brain fog has gone. Maybe there is hope for me yet!
 
Ever since I got this disease i am told that I look depressed. Even when I am not. Its just lack of energy and the in decesiveness for expressions that I face everyday. Seeing your post reminded my how I have slowly lost memories and people are usually at awe about my inability to recall something that happened a week ago sometimes. Sometimes its because we can not concentrate and live fully in the present due to the pain. I hope I am clear enough. A part of us lives in the abdomen. Its like you are half present and half absent and that may also contribute in having vague memories that can easily vanish from time to time.
 
Ever since I got this disease i am told that I look depressed. Even when I am not. Its just lack of energy and the in decesiveness for expressions that I face everyday. Seeing your post reminded my how I have slowly lost memories and people are usually at awe about my inability to recall something that happened a week ago sometimes. Sometimes its because we can not concentrate and live fully in the present due to the pain. I hope I am clear enough. A part of us lives in the abdomen. Its like you are half present and half absent and that may also contribute in having vague memories that can easily vanish from time to time.
Sometimes, I get absent minded.
 
Most definitely adrenal fatigue. I think any chronic illness can cause it. A painful chronic illness is going to cause some degree of stress and that will tax the adrenal system which will in turn effect hormones and can result in moderate to severe fatigue and sometimes depression. It sucks.
 
Have been having a lot of memory issues most of my life. Always assumed it was because I have never slept well. Diagnosed with Crohn's 2 years ago during surprise small bowel resection (jejunum). Following 2nd bowel resection I am now on mostly liquid diet (adhesions have stiffened my bowels and strictures have made solid food too much of an adventure) for past 2 years. I apparently have serious absorption issues and vitamin deficiencies. Today I found out that I have very little dopamine and serotonin. Have start reading up on neurotransmitters. Perhaps that explains the brain fog, losing my glasses constantly, trouble finding the right word, etc. Even with such low levels, I am not depressed at all, I exercise vigorously 3-4 times a week, etc. My nutritionist is starting me on 5-htp for the insomnia. Does any of this sound familiar to anyone??? Has anyone tried 5-htp??? I start on B6 (my level is literally 0 on the lab report) and magnesium in the next few days.... Don't worry, be happy, and hug someone!
 
Yep, I have this as well - more severely than normal - probably "chemo brain" after effects though.

I have wondered about adrenal fatigue before in relation to sustained internal stress levels.
Add chronic illnesses and vitamin malabsorption onto chemotherapy and well, the ideal ground for memory loss.

Its frustrating.

I have started "retraining" my brain - memory exercises and recall - thats the only thing I can really do. I now tend to write alot of things down - postit style and organize it later. I do it discreetly and make it look like doodling, but I feel a bit less stressed if I know I have a note written somewhere. It helps
 
Last edited:
Yep, I have this as well - more severely than normal - probably "chemo brain" after effects though.

I have wondered about adrenal fatigue before in relation to sustained internal stress levels.
Add chronic illnesses and vitamin malabsorption onto chemotherapy and well, the ideal ground for memory loss.

Its frustrating.

I have started "retraining" my brain - memory exercises and recall - thats the only thing I can really do. I now tend to write alot of things down - postit style and organize it later. I do it discreetly and make it look like doodling, but I feel a bit less stressed if I know I have a note written somewhere. It helps
I read a lot and do Sudoku some which should help.
 
I read alot too, but I get memory blanks where I can't remember sections or entire books I've read so its the recall that gets me.

Sudoku and the like are excellent helpers :thumleft:
 
I've had the brain fog going on since 2011, sometimes it is worse than other times. It seems to be my short term memory mostly and I'm a fair bit more clumsy than I used to be. I chalked up to lack of sleep starting in 2011 when I was diagnosed with rheumatoid arthritis, I couldn't get more then 2 hours of sleep at a time. My crohns diagnosis didn't come until earlier this year and the memory and clumsiness issues didn't worsen when the crohns symptoms starting to appear.



I'm thinking it is more of an autoimmune disease thing opposed to just a crohns thing. There is so much going on when your body is fighting itself. We lose sleep, we don't always eat as well as we should, I don't exercise like I should, there is the meds that make me tired. After both my diagnosis my GP asked me if I needed anything for depression so I guess he figures autoimmune disease and depression go hand in hand.


Playing devils advocate here. I don't discount any of this. I just question the actual reason for cognitive issues. With Crohns, it's the symptoms that mess us up- running to the bathroom can cause dehydration, we are perpetually anemic, low on B12, low on iron... I have fought depression most of my life. Crohns is part of it but for me the depression is a much more global issue. Every one of these issues can cause cognitive problems and that foggy feeling. Put them all together and add the stress of trying to live a normal life while dealing with this stuff and I can't imagine not having cognitive issues. So basically I agree with the result, I just question the actual reason.
 
I was diagnosed with Crohn's 14 years ago and suffered from significant and worsening brain fog symptoms for about half that time, for the past 7 years or so. A couple of years ago I started an experimentation process during which I tinkered with every dietary variable I could think of, and experimented with literally dozens of supplements to try to alleviate this issue, and the thing that has helped me the most has been reducing my fat intake.

I was eating a relatively high fat diet (I regularly added oils after cooking, consumed generous helpings of high fat snacks almost daily, and my #1 protein of choice was the highest fat salmon I could find), and a few months ago when I turned my attention on the fat variable, and decided to cut fat containing foods to assess how it might affect my brain fog, the results were dramatically good. Quite simply, I find the lifting of the cloud on my thinking, memory etc to vary directly with limiting the fat in my diet. I am a different person now that I've abandoned my high fat ways. And while I imagine most people would not characterize their diet as being high fat necessarily, I believe this might help those of us on a "normal" fat diet too. I now eat a low fat diet, as low as I can go really, and when I deviate, I feel it, I find that to that degree the fog comes back.

After my discovery I found an article that might very well contain the scientific reason/support for it. Since I'm new to the forum and haven't yet made 10 posts it's not allowing me to post the direct link but Google "zombie-diet-way-you-eat-causing-you-lose-brain-cells", it's an article by Shape magazine from 11/30/2015 if you want to see it. And the article links to a study "High-fat diet prompts immune cells to start eating connections between neurons". While the article isn't specifically about IBD it makes sense that the impaired ability to properly digest/absorb fat and the inflammation might cause the exacerbation of what it's discussing (and the study specifically references chronic inflammation as the underlying culprit).

I would note that despite that high fat diet I used to consume (for several years, I think the genesis of it was just the idea/fear of not consuming enough calories to sustain/increase my weight), and the normal fat diet I was on before that since my diagnosis (at age 16, I'm now 29), none of that fat was sticking around, I've always been somewhere on the moderately underweight (when not flaring)-severely underweight (when flaring) spectrum.

Best of luck to all :)
Sam
 
Last edited:
How did I miss this thread!?

It all sounds so familiar and I'm so happy to hear I'm not the only one.

My brainfog started when I was on 60mg of Pred and I was assuming it was due to that and that is would go away once tapered off the pred. But no:voodoo:

It's slightly less bad than is was but I've been forgetfull and unable to focus for at least 3 years now, it's driving me mad!

Like many others I've had to throw in the job, I was in IT too, because I just couldn't function even halfway normal anymore. Even working part time didn't help.

I have mentioned it to my GI team but they don't seem very interested.

It's blueberry season now so I have been eating a few of those, I'll increase the amount and hopefully it helps. Don't really know what else to do....
 
Top