Was fine in terms of energy until I started the azathioprine. Since then I've been very fatigued most all of the time.
I kinda feel the same, but rarely express it... explaining it is pointless. And what they don't understand is what helps others battle fatigue will NOT help us.... believe me, we've all tried it.Yes, to the extreme. And none of my practitioners get it. I had to listen to the rant about other disabled people pulling it together, blind and crippled, so you can too. I called her an ignorant B%tch. I get very short-tempered with it, and every night I wish I would just never wake up again. I am so done with this struggle and the lack of care.
Interesting Duwardian. How did you get the gene mutations diagnosed? I hope this pans out for you!
Questions to everyone: Who is still working and if you are how many hours a week?
I am not working, but at times feel like a whimp. I feel like I just need to buck up. I need to find a new line of work, but don't have and motivation/energy to think of what that would be or what I could do. Thanks for listening.
Wishing everyone a wonderful Christmas season.
Thanks for sharing that. I did have an a lotta stress right before the switch as well... and I almost was 'expecting' the cronh's to go in overdrive (which it did). However... I have since done everything I can to minimize stress... but I'm still stuck at this bad place. But other than that, not much else has changed as far as diet or drugs. It just kinda happened.Hamster: You mentioned that your constipation and fatigue happened at the same time ? I had diarrhea for 17 years and then all of a sudden in May of this year I started to get severe constipation ! As soon as the constipation started, the "exhaustion" started. I have been "tired" for years, but it was manageable and I could lead a "normal" life. But in May I started with the "exhaustion". I even wrote it in my Day-Planner. In May I just wrote "exhausted" on every single day of my Day-Planner Calendar. I am back to diarrhea now ( could be from the fact that I took antibiotics in November ). But now I am at the "fatigue" level. In 2014 I had a lot of stress and worries and I just got so tired mentally, physically and emotionally.
I have so many things wrong with my physically and then I have Major Depressive Disorder. Some things that probably make me tired are: menopause, hypothyroidism ( I just started on medication this year ), B12 deficiency, iron deficiency, depression, Ulcerative Colitis, arthritis and medications.
I hear you! I feel like that all the time. Comparing myself to others. I finally realized I can push and do more than I should and then am no good for days. I have decided I can't create energy that isn't there. I will literally stop functioning mentally and physically.Christie thank you for sharing.
I wrote a long reply but erased it because I felt like I was whining. My sister has many heath issues but she gets things done and goes places and leads a normal life. If she can do it then why can't I ?
If you could lead a normal life, Ann, you would be doing it! If it were just a matter of will power, or effort, or desire, we'd all be living happy, productive lives. There are clearly far more complex things going on. Don't blame yourself for the things you can't manage. Your sister doesn't have to cope with the same things you do, and it's not just physical symptoms that differ. She may have different people supporting her, different experiences to draw on, different emotional responses and ways of thinking. These are not things we can just control how we like. We can usually make some changes, but working out how to do so is very difficult.I wrote a long reply but erased it because I felt like I was whining. My sister has many heath issues but she gets things done and goes places and leads a normal life. If she can do it then why can't I ?
I second this. I have an ileostomy now, which I love, as it means I don't have this problem anymore, but when I did I used Molimeds (the brand the NHS uses - like most things, they're free on the NHS for people in the UK). I still use them for my bladder. They give you piece of mind and spare your clothes. Draw sheets work as protection for car seats, etc. too.Just a quick note about car rides. I have taken to wearing adult diapers - Depends are a little thinner and pretty discreet. At first it was hard to do (emotionally) but now I have come to really appreciate them. I have not pooped in them but just knowing I have it on seems to take the stress off of me. I know if I do have an issue I have some protection on. When I get close to where I am going if we stop somewhere I will take it off and toss it away in ladies room. I highly recommend them. The hard part is trying them for the first time. It was a little hard for me to wrap my head around but now its really fine. Nobody can even see them.
Sorry, it takes me forever to respond. Programming and Web design/maintenance. But that's certainly not for everyone, it's a bit on the nerdy end for most; but I like it.Hamster said:
"But I can do about 25-30 hours of work a week, at home, lying down, on my computer, and stay off the phone for all but 10 minutes of the day. This is definitely not how I saw myself when I was younger, and fresh out of school with all the energy in the world. But its all I can handle at the moment."
So what is your profession Hamster and what ideas do you have for types of jobs that are easier when fatigued? I have been in the healthcare field for a long time as Physical Therapist Assistant. I don't have many ideas and not very motivated to look. Thanks for sharing
This is pretty much how I feel too. Though I can do more when it's things where I can plan my own schedule. So I walk my dog every day, and have family come to visit, etc. But I walk my dog at the time I have most energy. I'm a morning person, so I get up early, wait for my meds to kick in, then go out, maybe for fifteen minutes, maybe longer, but if I get tired (or any other symptom gets too much) I come home and rest. And it's ok having family round, because I still nap during the day when I need to, eat when I feel most able, etc.@Ann. I feel you! I don't like to even plan 2 days in a row doing things (and that is 2-4 hours at a time). It will definitely catch up with me. My mom is very supportive, but I think she finally realized how severe the fatigue can get when I visited her. She saw first hand when I just shut down. She says she sometimes gets that way too, so she knows the feeling.
It is a daily struggle and I need to watch how I plan things.
I am 54 years old and disabled. My sister is 64 years old and just retired. My sister has many things wrong with her health. We are both tired all of the time, so she somewhat understands me when I say I am "tired" ( which really means exhausted/fatigued ).I kinda feel the same, but rarely express it... explaining it is pointless. And what they don't understand is what helps others battle fatigue will NOT help us.... believe me, we've all tried it.
I'm felt the need to chime in as misery does love company. I've just reached this point in my life where after repeated episodes of extreme dehydration (getting the flu and losing 10lbs over night through my ileostomy), I've caused enough damage to my kidneys I now can add a new "disease" to my list of problems... "Kidney Disease". Due to my kidneys not functioning properly, I now experience added fatigue which when added to that related to my Crohn's Disease and depression, it has pushed me over the edge and not being able to work anymore. What's sad is that before my kidneys started to have major issues, I had enough energy to get my work day finished and that was about it. Now I have those 10 hours back in my day, but I am just as tired, if not more, but virtually all day now......... I think I'm a bit of a wasted life and that's my biggest regret. I would so love to go on holiday somewhere, but you all know how difficult that is. Utterly exhausting.
My mom died in 2013. So for Christmas 2014 my sister had me join her and her family in Idaho for a week during Christmas. I enjoyed my week there. My sister paid for my airline ticket and my hotel. I spent time with my sister, brother-in-law, my niece and two great-nieces. BUT...... this entire trip was SO exhausting ! Packing, planning, cab to the airport, the plane ride, staying at a hotel, going places and doing things. I know my sister wanted me to have the best Christmas ever and I had a good visit there, but it was an exhausting week!!!!! I even had to stay in my hotel room all day one day because of colon issues. I guess this flying to Idaho every year is going to become a new family tradition for me since both of my parents are dead now, but can I survive this trip EVERYTHING year ????? : - 0.I feel guilty sleeping through the day, but at least you people understand as so many others don't and make me feel guiltier than I do. It is a sorry state of affairs, and I think I'm a bit of a wasted life and that's my biggest regret. I would so love to go on holiday somewhere, but you all know how difficult that is. Utterly exhausting.
My sister has many health issues but she APPEARS to handle them way better than I do. I believe she has Sjogrens Syndrome, some form of Lupus, Cataracts, Rheumatoid Arthitis, terrible gums/teeth, hair loss. And she had a lumpectomy with radiation in 1987 for breast cancer. AND she is taking all kinds of strong medications that have side effects.I did not know that aza caused fatigue - I thought I had researched all of the side effects as well! I struggle with fatigue - on top of crohns I have drug-induced lupus from humira and am having a flare at the moment. My partner isn't very understanding - his theory is that I am lazy and I "just have to push through it"! Not very helpful cause when I try to do that I am completely wiped out. Some of my friends don't understand this very well either and I feel so guilty turning down invitations or not visiting.
One of my bosses is quite ignorant about it all - she told me "we all get tired sometimes"! And I was so exhausted I wasn't thinking straight that I didn't realise until later how badly she insulted me.
So glad to have found this group - don't feel quite so alone.
And I love the spoons theory - I can totally relate to it but unless you are discussing with someone in a similar situation they don't seem to get it.
Love this, it's a great explanation of the struggle! And it IS hard.am working to balance my desire to constantly fight this illness while at the same time choosing to be serene and at peace in the middle of it. I'm not good at it!
Thank you for sharing. What you said made me feel less alone. For me it truly is about balance.....physically, emotionally and mentally. I am learning that it is not selfish to take care of myself, no matter what other people think. People actually respect me more when I stand up for myself. Having my own set of physical and emotion boundaries has really empowered me.I just wanted to add that having an Inflammatory Bowel Disease automatically sets us up for mood disorders. 95% of the seratonin (brain chemical involved in regulating positive mood and energy level) in the body at any one time is found in the bowels; it's made there! Doesn't it make sense that if our bowels are damaged, we won't be able to make or transmit appropriate amounts of neutrotransmitters?
(See this study, which showed that inflammation in the intestine inhibits neurotransmitter production even in the non-inflammed portions of the digestive tract).
Any chronic disease is tough to deal with emotionally and psychologically, but when it attacks our physical ability to manage our emotions and balance our brain chemistry, it's especially insidious.
This is a hard week for me energy-wise. I felt reasonable last week and was able to feel that I accomplished some things over the weekend, and this week it all sort of fell apart. I have my plan for dealing with these days (my green light, yellow light, red light plan mentioned in a previous post!), but it feels LAME to have to ration myself so carefully. I hate resting so much when a lot of times after resting a lot, I still feel just as fatigued. I fight the idea that I'm lazy and that I'm a disappointment because I'm not living up to my potential. It's impossible to explain this sort of deep brain fatigue even to friends who have other health concerns. It always feels like I'm making excuses for just being a silly and self-involved person. And people get tired of hearing that I'm discouraged and feeling worthless.
I feel as if I should just push through it, but when I do, I fall apart and I'm no use to anyone for days. So I have to admit that when I choose to rest before I reach the red alert moment, I'm less likely to reach that falling-apart stage and I am able to be a better wife and friend and person.
I am working to balance my desire to constantly fight this illness while at the same time choosing to be serene and at peace in the middle of it. I'm not good at it!
Be KIND to yourself today. I am trying, too!
WOW, it sure helps to have this forum. I can't thank whoever started it enough. I was starting to think I had something else. I cannot tolerate sunlight at all. The beach has become impossible for me now, this only happened within the last few years, and I was puzzled, kinda scared, because this didnt fall under classic crohns symptoms.I don't have fevers, but I have become very intolerant to heat, which I didn't used to be. The direct sun on my head does me in after about 10 minutes. (I have UC)
WOW, it sure helps to have this forum. I can't thank whoever started it enough. I was starting to think I had something else. I cannot tolerate sunlight at all. The beach has become impossible for me now, this only happened within the last few years, and I was puzzled, kinda scared, because this didnt fall under classic crohns symptoms.
Just a hunch. I never saw heat intolerance or sun intolerance as a symptom of Crohns, and like you, I am very underweight, and also like you, my GI looked confused when I mentioned it, specifically the sun issue, and he was supposed to specialize in Crohn's. My extremities are very cold as well ( but I have Reynalds Syndrome, which probably isnt related to my Crohn's ) I have searched forum after forum for this, and no Cronh sufferers have mentioned it, other than the low-grade fever. I see it mentioned on Lupus and MS forums, but that was it. but now I see two of you, and you are both in this forum.Like 1sickpuppy, I don't feel feverish, but I can't stand hot temperatures. It baffles my doctors because I'm extremely underweight and underweight people usually can't tolerate the cold because they have no bodyfat to keep them warm and if they're not eating enough their body won't waste energy keeping warm as there are other body functions which are more important.
I have a lot of medical issues besides Crohn's though and I don't think this symptom is Crohn's related in my case.
In general, people - including healthy people with no temperature regulation problems - are warmer at the core (torso, head/face) and cooler in the extremities (arms, hands, nose, feet, toes, fingers). I think again because of the need to keep the vital internal organs working is the priority, and the relatively poorer blood supply to the extremities makes body heat centre on the core. In people with temperature problems this distribution of heat may become more obvious - as in Raynauld's syndrome, frost bite, etc.
hamster - what makes you think your temperature problems are related to fatigue rather than Crohn's in general?
No, I don't think it is. At least I couldnt find it as a symptom on the internet. Again, I just have this hunch its related to extreme fatigue in some strange, maybe indirect way.Is heat or sunlight intolerance a part of Ulcerative Colitis ?
I no longer can be in direct sunlight, even for a few minutes.
When I am in direct sunlight I feel like there is a torch on my skin.
Even when I am driving my vehicle with the window open and the
sun hits my neck and arm it really feels super hot.
So, here I am in Arizona and I cannot tolerate the sun whatsoever.
I will now have to buy an umbrella and wear long sleeve shirts and a
big funny hat ?:eek2:
Yes, the fatigue definitely causes irritability. I really hate that. It has transformed me into an awful person at times.Constant fatigue...which leads to increased irritability. The fatigue is less when I'm on prednisone...but everything else about prednisone sucks. Its so hard to explain to family members and friends when you look normal otherwise...but are just so exhausted.
Just a hunch. I never saw heat intolerance or sun intolerance as a symptom of Crohns, and like you, I am very underweight, and also like you, my GI looked confused when I mentioned it, specifically the sun issue, and he was supposed to specialize in Crohn's. My extremities are very cold as well ( but I have Reynalds Syndrome, which probably isnt related to my Crohn's ) I have searched forum after forum for this, and no Cronh sufferers have mentioned it, other than the low-grade fever. I see it mentioned on Lupus and MS forums, but that was it. but now I see two of you, and you are both in this forum.
Also, as my fatigue got worse, my other symptoms did not... (well, I got a bit more constipation), but the heat issue has been a perfect coloration.
This *IS* a really interesting topic . . . when my Crohn's symptoms are worse, I run unusually cold AND I have Raynaud's Syndrome AND I don't tolerate heat well! Even before I was diagnosed or really sick, I stayed out of the sun as much as possible. There is at least one study that shows more flares in IBD in hot weather conditions, so I know we're not crazy! I live in Arizona, too - ha! It's was funny last week when it was pretty unseasonably warm here in Arizona (low 90s) that I wasn't whining about being hot; I'm in a bit of a flare so I'm cold! Perhaps my illness did some good by saving us money because we left the a/c off. I think I would run cold all the time, but I had my ovaries removed due to endometriosis a while back, so I don't have the same amount of estrogen I used to (less estrogen = more body heat). I'm pretty sure that helps me not be as cold as I could be. Aren't we all complex?!Just a hunch. I never saw heat intolerance or sun intolerance as a symptom of Crohns, and like you, I am very underweight, and also like you, my GI looked confused when I mentioned it, specifically the sun issue, and he was supposed to specialize in Crohn's. My extremities are very cold as well ( but I have Raynaud's Syndrome, which probably isn't related to my Crohn's ) I have searched forum after forum for this, and no Crohn's sufferers have mentioned it, other than the low-grade fever. I see it mentioned on Lupus and MS forums, but that was it. but now I see two of you, and you are both in this forum.
For me, the flares timing doesnt seem to be related to my sun/heat issue. It just kinda popped outa nowhere, and stuck. And here I am, a vampire, when I used to love the sun. I am sure my dermatologist is proud of me.This *IS* a really interesting topic . . . when my Crohn's symptoms are worse, I run unusually cold AND I have Raynaud's Syndrome AND I don't tolerate heat well! Even before I was diagnosed or really sick, I stayed out of the sun as much as possible. There is at least one study that shows more flares in IBD in hot weather conditions, so I know we're not crazy! I live in Arizona, too - ha! It's was funny last week when it was pretty unseasonably warm here in Arizona (low 90s) that I wasn't whining about being hot; I'm in a bit of a flare so I'm cold! Perhaps my illness did some good by saving us money because we left the a/c off. I think I would run cold all the time, but I had my ovaries removed due to endometriosis a while back, so I don't have the same amount of estrogen I used to (less estrogen = more body heat). I'm pretty sure that helps me not be as cold as I could be. Aren't we all complex?!
Whether because we're in the bathroom, on the couch, or intolerant to heat/sunlight, I bet people with IBD are among the least likely to get sun-exposure related skin cancers - ha!
I was visiting my sister in another state over the Christmas Holiday last year. She put me up in a nice hotel. I was actually in a handicapped room. The shower was made for handicapped folks. The tile in the shower and the tile in the bathroom were the same and at the same level ( no walking over the side of a tub ). The shower floor was flat. It had bars to hold on to, if needed. It had a bench. And it had a hand-held shower head. I was in heaven ! I never thought a shower could be so nice. I had my choice of standing up in the shower and using the hand-held shower head, or I could sit down on the bench if I wished ( I sat on a towel on the bench ). How weird that one of the best things on my vacation was a shower !:dusty:Mine got me a bench for over my bath for a safe shower. It is really great as there is far less chance of me coming to harm. I know exactly what you mean by lightheaded fainting episodes. I love that only people on here know exactly what I mean. The understanding from fellow Crohnies and colitis folk is what we all need.
I've had modafinal, but the side effects weren't worth it and I quickly developed tolerance to it.Does anyone get prescribed any meds to help them with fatigue? I know this sounds extreme but I had a lady that was suffering from cancer and her doctor gave her a med for fatigue and I can't remember what it is but I am trying to find something that will work.
This does sound like you are having some physical and mental addiction, more mental than physical. I used to feel that in order to do what i needed to do for the day I had to take a pain pill. I was so scared to be in pain and be unable to do things that I started to psych myself out and make myself believe I had to have it to function and it was helping me, but if i ran out of it it was impossible for me to get out of bed even. very scary stuff, talk to your doctor about it please. I don't want you to have the same issue i did. I am on methadone now, have been for two years as of 5/5/15 and it started with codeine.Codeine does make me feel calmer and more relaxed mentally, so maybe that's due to its sedative properties, but physically it makes it far easier to get up and do things. But maybe it's just because it stops the pain of all my body aches that makes me feel like I've more energy? But it works too well for me, now I'm addicted so I feel awful without it.
I am glad that you let your doctors know. It is very hard to live with this disease and not take pain medicine. Doctors are usually very uncaring in this area. I just had one lecture me about how bad methadone is for crohn's and got my family getting on to me about it. What else do they want me to do? Be miserable all the time and really start hating life? I am sending support and healing thoughts your way!:hang:My doctors are well aware of my addiction. It's just not a priority, given my other health problems. I think it's equally physical and mental. I do stop taking it sometimes, so I know I can, but I don't want to stop taking it altogether.
NGNG I haven't been diagnosed with CFS, but I think my fatigue is not related directly to my crohn's. My symptoms see to be under control, but I still struggle with fatigue. How did they diagnose the CFS?I'm really happy to talk about this because I know most crohnies deal with fatigue at some point usually because of malnutrition or dehydration but I think I'm dealing with extreme debilitating fatigue unrelated to my crohns. I was diagnosed with fibromyalgia/cfs. I wonder if others here may have as a result of crohns had another illness like that activate. They think that chronic fatigue syndrome is an immune disorder as well.