How are you feeling today?

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No longer sleeping deeply, went to sleep at midnight, woke at 3 and then at 0530. Everyone keeps asking me if I feel ok, its making me panic. I feel fine, I don't want to analyse it further, I leave that to my oncologist.

My stomach is upset again due to my anxiety, but its not too bad as I keep drinking my whey protein. It could also be the antibiotic which I've been prescribed to combat my miserable CD4 levels (73 when they should be closer to 200). Or the stark realisation that it is highly unlikely I will be able to have children. Take your pick from that nice mix.

I'm so anxious to get started on my treatment, its going to be nasty, I just want to get on with it and give myself the best chance.

When are you likely to start treatment? My circumstances are different, but I'm not able to have children. I know I won't be able to help you feel any better about it, but if you want someone who is also in that situation to listen to you, feel free to send me a pm.
 
Doing okay today. My doctor has me on a new anti-depressant which is helping with my mood. I'm still having to take a sleeping pill to get at least 6 hours of solid sleep each night, which stinks. My colitis has abated somewhat...... so this is the best I've felt in a couple of months.
 
When are you likely to start treatment? My circumstances are different, but I'm not able to have children. I know I won't be able to help you feel any better about it, but if you want someone who is also in that situation to listen to you, feel free to send me a pm.

Looks like 27th July or 3rd August. I'm very grateful they are getting the ball rolling quickly, it helps!

And thank you for the offer!!:hug:
 
I actually had a good doctor's appointment this morning :cheerss: We need more of them around here. I was seen on time :ywow: (because I was the first patient of the day - it's worth getting up and out early in the morning for that). We discussed embarrassing things without me getting embarrassed and my doctor made it easy for me. And I came out with two scans and a blood test booked as well as a referral to a new specialist, so it was productive too. One scan I feel will be a wasted trip to hospital but my doctor is taking a better-safe-than-sorry approach which I can't complain about, and the other scan, referral and blood test I've been wanting to get sorted for ages but other things kept getting prioritised so I am happy I am finally getting started on them! Also talked about a new med that's safer than one I'm on now which I don't want to give up, so I'm glad I'm finally being given another option rather than just being told I need to stop my current medication.
 
I lost some weight though.... but my doctor didn't try to rush me into hospital so I guess that's good; I've been gaining for several months so she's giving me the chance to gain on my own first.
 
Stressed out! Neck hurts, arm hurts, tired, grouchy...just a mess today. Time to relax with the hubby and watch movies I think.
 
Such a random question! But dipping in the U.S. is generally in reference to the use of chewing tobacco. At least, it is in the redneck county I graduated high school from.

I think KimboHiggs was referring to the first post of this thread, so not entirely random.
 
My colitis is under control; now I'm working on my emotional state. If it's not one thing, it's another.
 
Got some good news on Friday - localised b cell lymphoma. I start radiation tomorrow, by far the lesser of the evils. So I'm feeling very grateful.

Now to try and quell my stress levels and get my digestion back in hand!
 
I've certainly been testing my limits lately with exercising and today I ended up calling my mom for the first time in months to come meet me out on my walk so I could get home accident free. Made it! So glad to have her around or always a quick phone call away to walk me through and keep me distracted from pain, etc. until I can get to where I need to be.
 
Feeling okay today. Trying to focus on blessings in my life versus negative stuff in my life. Either that or my meds are working well. :ybiggrin:
 
My UC may have just ruined a relationship that I thought was going fine. I had a migraine all day so my whole day was wasted being unable to get off the couch. And I've started getting these weird sensations in my hands and feet...first it was tingling now it's like hot spots. The migraine has left my head and apparently settled in my joints.

Well at least the Uceris is working. Now if only my insurance will approve the preauth so I can continue taking it. Sigh.
 
My stomach isn't the best and I am worried about my father who is traveling on his own with dementia.

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Exhausted, the heat kept me up until 3am. But I think its only a partial factor here as my thyroid meds need to be increased too.
And bloated, I feel like a hippo and I feel that all my movements are awkward and full of effort :(
 
Completely wiped out. It's either the heat, meds. or just life in general but today I've been suffering from what I've come to deem "prednisone brain." Not as constant the lower my dose goes, but days when it hits requires an extra bit of humor to get through. This morning it took me 20 minutes and 6 trips between my bedroom and kitchen to remember what the hell I was trying to do - I was trying to fill up my water bottle so I'd drink the fluids I'm supposed to. My focus and attention span is worse then that of a squirrel during Spring.
 
Tired, achy, and apparently stupid, as my boss said all her staff were stupid today, ye stupid for working there lol.hey ho not easy to get another job when your old and ill haha. Best wishes to all...
 
Tired, achy, and apparently stupid, as my boss said all her staff were stupid today, ye stupid for working there lol.hey ho not easy to get another job when your old and ill haha. Best wishes to all...

Seriously, she is allowed to say that?
 
Tired, back to being tired. Everything is an effort, and even the slightest thing is a cause of stress.

Started to come out in a patchy itchy rash which I can only relate to tiredness and stress as I haven't changed a single other thing with my creams or diet.

Entirely possible its due to radiation as well.

Sheesh, some times I just wonder why I bother fighting so much you know? It seems counter intutitive to have to fight this much for every day existence.

I feel like I bounce from crisis to crisis the last year and so much that I am almost unable to deal with periods of stability and normality
 
Hi thanks for the support on the boss issue, only problem is she is the actual owner,no hr either but she thinks that being horrible gets respect,when any decent person knows that is most certainly NOTthe case....We all hate her ,well hates a strong word i dont really like to use really,but she is the she :devil: of all bosses,thank god we dont have to deal with her that often :voodoo:..... wish the job market was better ,but im on the lookout for a new job,il be off as soon as the right one comes along.. enough of the rant , hope i find you all well today folks ?:)
 
Not good.. abdominal pain and really tired :( my back hurt me my stomac hurt me..damn.. i just hate this days...
 
Tired, back to being tired. Everything is an effort, and even the slightest thing is a cause of stress.

Started to come out in a patchy itchy rash which I can only relate to tiredness and stress as I haven't changed a single other thing with my creams or diet.

Entirely possible its due to radiation as well.

Sheesh, some times I just wonder why I bother fighting so much you know? It seems counter intutitive to have to fight this much for every day existence.

I feel like I bounce from crisis to crisis the last year and so much that I am almost unable to deal with periods of stability and normality

kikig you are amazing. I know about that fight for every day existence. It is called surviving rather than living and somehow we get through it. Its not surprising that when there are more normal periods then the body and mind use that time to release the stress - and we can end up feeling worse just because of that. I am having just such a crisis at the moment. Physically I am pretty good but mentally I am a mess because I don't need to be so tough any more so it looks like I am going to the other extreme.
We can do it together!
 
kikig you are amazing. I know about that fight for every day existence. It is called surviving rather than living and somehow we get through it. Its not surprising that when there are more normal periods then the body and mind use that time to release the stress - and we can end up feeling worse just because of that. I am having just such a crisis at the moment. Physically I am pretty good but mentally I am a mess because I don't need to be so tough any more so it looks like I am going to the other extreme.
We can do it together!

I second that Kikig is downright amazing. I think, we get so used to the horrific crap we witness/ experience/ battle and manage on a daily basis for extended period of times that it's a struggle in itself to switch gears once physical survival needs quit being visibly in our face. It's at that point when the mental effects of chronic illness push their way to the forefront and start making demands.

Currently, compared to how the last years have been... the past few weeks I'm consistently feeling pretty fine. I'm crediting it to the reintroduction of Remicade. Although docs. disagree on my opinion of "fine", I prefer not to measure how I'm feeling based on the medical outlook - as long as I'm no longer blacking out from pain, can manage some form of exercise/ movement in my days and hold a decent weight it's good.

Gut pain is down, but pain during BM is a real struggle still and the off and on reappearance of fresh blood is certainly concerning. I'm sure I'm not the only one who cries on occasion at the sight of blood before steeling oneself to face the world again. The most aggravating part is how invisible everything is - not just the disease itself, or the majority of symptoms, but how the worst most surreal aspects are faced down alone, physically isolated behind doors while being betrayed by our own bodies.

Absolutely stir crazy from being stuck inside with family waiting on edge with a current evacuation notice in effect and the air quality so poor stepping outdoors in unbearable. I love them, but no one should be stuck inside this long in summer with family and no air conditioning.
 
pretty good today in more ways than one, as my ex manager rung me yesterday to say she has put me forward to someone she knows at a rival garden centre, for a job as their visual merchandiser,:dance: .. so im going to ring her friday and see if i cant get myself a new job, with more money to boot.. :ywow: and if i do it will really p...off my nasty boss big time..:eek:utahere: i hope,with luck yeah!!!
 
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Really bad today!
Have been up all night on the bathroom floor in agony! Overheating passing out and crying in pain!
:(
Hate days like these x
 
aw Kimbo, i know how that feels hun , im sorry your having such a rough time, sending you get well soon :hug:,s xx
 
The past few times I've flared I've had chest pains too... A doctor mentioned previously they think the crohns may now also affect my oesophagus area... Could this be the cause of the pain?! My tummy is in absolute agony and very loud gurgling :(
 
The past few times I've flared I've had chest pains too... A doctor mentioned previously they think the crohns may now also affect my oesophagus area... Could this be the cause of the pain?! My tummy is in absolute agony and very loud gurgling :(

This time around I was experiencing really bad upper gi pain and a lot of chest pain I didn't really connect to possibly being from active disease, had scope that showed inflammation and some small ulcers just before stomach, in stomach and below. My gi suspected stomach acid being a culprit to irritating the ulcers leading to the pain so she suggested omeprozole (anti acid) to knock it down. Helped tremendously and seems to have given the rest it needed to heal some as there's no more of THAT type of pain even after taking the omeprozole out of the ewuation. As crummy as it is might see if your GI will scope the upper to get a visual on things especially if it's never been done or has been a while.
 
hi it seems a shame this thread has gone silent,, hope it can be revived !!
so here goes , iv just got a new job n so has my son, so tihngs are on the up! i have crohns, but doing very well at the mo, since ileostomy last year n reversal this feb. hope this msg finds you all well...
 
hi it seems a shame this thread has gone silent,, hope it can be revived !!
so here goes , iv just got a new job n so has my son, so tihngs are on the up! i have crohns, but doing very well at the mo, since ileostomy last year n reversal this feb. hope this msg finds you all well...

Congrats on the job!:cheers:
 
I feel great! I feel like a human being again. Who knew cutting out part of your body could feel so good?! :wink:

Hi hun, oh i know it was the best thing that happened to me, i couldn't believe the relief i got from my re-section it was blessed :banana::banana:
so glad you are feeling so much better, heres to that remaining so for a very long time :beerchug:, you take care n keep well hun :hug:
 
My stomach is not well and for a little while I was feeling a headache. Mentally, I feel like I could be doing better too.

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Not feeling so good.. my stomach is going crazy... i'm at work and i'm a little sad but i don't know why...
 
Hi all, sorry to see some are feeling rough at the mo, so sending you all get well wishes and hugs.
My stomach has been a little gripey this last week, not sure if it's subconscious nerves for new job start on wed,s , as I don't feel I'm aware of any nerves oh well onwards n upwards..
 
Today is average, I have plans to make hamburgers with a garlic bacon aioli spread and I couldn't be more stoked to dig my fingers into some of that raw ground beef, shape it, cook it, entice all of my senses, and then eat it. Bleeding, pain, cramping be damned - food is my passion and I love finding ways to create meals that meet both my dietary needs and desire for a varied diet in flavor and texture.

But I am feeling dark and sad and tired of being told I'm twisted, or too twisted for social acceptance, and need to rant a bit.

Yesterday, the general consensus of my case being a crap shoot was yet again verified. I met with one of the top GI's in the area, a GI who has had an extensive focus in crohn's and IBD, a GI with ample experience, and I was told she did not feel comfortable taking me on as a patient due to the extensiveness of the disease and lack of options.

I am tired of being shuffled around, tired of no one being able to help, and tired of people not being capable of bluntly stating the truth. I'm not the most tactful individual, I find beating around the bush utterly useless, and wish dr's would quit treating me as if I'm new to it all. It was 9 years Monday. 9 years of failures, minimal successes, no remission, not even minimal disease activity. 9 years of "what am I to do with you" before my life changes and I find myself moving on to a new doctor.

I don't have space in my life for humble or hesitant physicians, I want to find another with a damn God complex who is willing to prioritize their passion for medicine and IBD above any other aspect in their life - including love, including family, including serving others - I want their passion and desire for self-fulfillment to come first and I want to capitalize off that passion. Apparently, this is a twisted desire because we live in the age where love is everything, bodies are supposed to heal themselves, unicorns roam free and frequently, and we don't use one another. A world without disease that is ruled by love is all fine and lovely and a wonderful aspiration - but it's not life's reality and is utter bullshit.

Despite my generally positive approach to each day, it's only possible because I see and have a need to acknowledge the darkness and pitfalls of the current course of treatment/ the disease/ life in general before I can focus on the positive. A need to acknowledge the bleeding, the lack of improvement, the eventual surgery, the constant infections, bruising, and that every Tuesday I will face a day of headaches, nausea, fatigue following my injection. Facing all the dark, scary, messed up crap I will deal with and continue to deal with so the rest of my life can remain in tact. I do not get a break from the daily efforts because then I will lose those couple good days I do get to enjoy.

I spend my free time researching a disease not dancing in a club. I am passionate about food and cooking, not clothes and drinking. I write because I can manipulate a world that way - I can embrace how I see it rather then trying to avoid offending one of the constant optimists in my life by speaking about something that rips their head from the clouds until they can shove it under some sand. The mistake seems to be assuming that my ability to address and acknowledge the painful, difficult or challenging aspects in life means I am unhappy. Instead, it is in these complexities - the darkness and twisted nature of life where I am happy.

I am sad mostly just because all that doesn't seem acceptable by others and bothers them more then it bothers me as far as I can tell.

Grateful for this thread for when those daily things are just well... need a place to go. Hoping everyone's day is successful, unpredictable bellies and all.
 
Not feeling very well i'm sad because i lost weight and can't gain it back..and i'm just siting here at 02:00 AM (Romania) thinking about life...
 
I'll tell you why I'm feeling great! Seeing this article on the front page of Yahoo.com this morning about Jake Diekman, a pitcher for the Texas Rangers, and how he has battled with Ulcerative Colitis, all while competing at the highest level of his sport! Such an inspiration and I love supporting his cause and wearing his shirt supporting CCFA that Diekman created with Athletes Brand!:))

Yahoo Article: http://sports.yahoo.com/blogs/mlb-b...eady-to-talk-about-his-disease-164232506.html
 

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i am lost. Not diagnosed. Still in pain but not as much as I have been for the past week. Urgent care on Thursday for a new internal hemorrhoid. That was embarrassing and traumatic. Jeeze. Just got my period today so now I'm even more confused and I'm scared I'm making a bigger deal out of everything. Have an appointment with the Endocrinologist for Tuesday. GI doc is booked until Oct 28th. My GP has put an urgent request in to GI to see me sooner. Made 2 attempts to go to the ER but chickened out because I just don't know what I'm doing. I'm worried they will turn me away and not admit me if I'm not having a sweating, fainting episode from food which I haven't eaten in two days. Did ok on carnation instant breakfast last night tho! I just want to eat some food. I want to be able to go back to work. I want my happiness and energy back. I want my life back. This is rough guys. 2months of scattered symptoms ranging from nasty painful acne infection to 15lbs lost since July for NO REASON. 2005 had a Barium x-Ray test done, problem where the small intestine and colon meet. Too scared to get the endoscopy and colonoscopy done at that time and opted for Citracel. Blood test and allergy tests done last Friday, all ok except for my Vitamin D levels were low.... I work outside. It makes no sense. I'm lost. I'm sad. I feel hopeless.
 
Thanks! :hug:
Today I'm trying to be strong after my grandpa's funeral because I know grandpa loved me and didn't want for me to be depressed. So i keep my head up and try to be strong for him.. R.I.P. dear grandpa... :(
 
:'( feeling really crappy today, havent eaten anything since lunch yesterday but that caused all kinds of stomach pain and nausea ... was only able to throw up half of it and spent the rest of the day in bed passing out around 9pm after taking my humira inj. Today I am sad and feel alone ... wish i knew someone with crohns that i could talk to or confide in... feels like no one understands i got the weird eyes from some girl in the cafeteria as i strained my soup and threw the rest of the can away and microwaved the broth at work . Just trying to get through the day without being incapacitated by pain ... if avoiding food is what i need to do then so be it
 
My doctor wants me to get blood work and do a calprotectin test. What is that?

Pretty sure calprotectin's a test ran from a stool sample that checks inflammation. I've seen it ran along side other stool tests when checking stool samples for potential causes of blood, check inflammation levels and rule out or verify bacterial causes of symptoms.
 
I hate this disease. I have spent most of the last three hours, most of the time I have been awake in the bathroom. Earlier this year, they told me I was in remission. Not anymore.
 
I've lost 6lbs in 3weeks ... which is not too bad hopefully i can gain most back with rehydration... my stomach has decided to tolerate some food, i hope this continues. Small Bowel series tomorrow morning... hope they don't find anything major. for now i'm just glad to be feeling a bit better no major pain today!
 
I have gone to the toilet eleven times so far. They took blood work, urine and feces samples from me today.
 
Best wishes to all, hope things get better soon ..x
Im feeling ok in general, but my joints are blooming painful at the mo, a lot of lifting n shifting at work just now, so no wonder really !
 
Woke up with some of the most nauseating pain in months. More like the moment I tried moving after waking up it hit. So glad next remicade infusion is next week and for the freedom to stay home curled up with a heating pad reading!
 
Hi duh panda, sorry your having a rough time, hope the pain has eased now for you . hope the infusion gets you back on track soon, hang in there..
Hi om3a1, glad the 6mp seems to be helping you now , thats great news, long may that continue...
best wishes to you both, and to everyone else , take care x
 
Tired.
So so sooo tired :'(
I'm 23 and thats also how many hours a day I would love to sleep!
Since my Endoscopy 2 weeks ago I have had extreme extreme fatigue :(
I have my MRI scan on the 13th of this month too I received the letter today!
Hope everyone else is well xx
 

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