How are you feeling today?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

KimboHiggs said:
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
Click to expand...
Sometimes ,I would like to sleep that much too.
 
KimboHiggs said:
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
Click to expand...

Has anyone checked your iron?
 
Legs feel like murder. Guts feel like murder. Sooo ready for infusion on wednesday. Certainly helps keep the need for a functioning medical treatment plan a priority. In other non crohns related news (cuz we're all so much more then medical jargon), it all makes a great motivator for sitting down and taking care of splitting up a hundred paged and growing manuscript so it's easier to work with.
 
duh panda said:
Legs feel like murder. Guts feel like murder. Sooo ready for infusion on wednesday. Certainly helps keep the need for a functioning medical treatment plan a priority. In other non crohns related news (cuz we're all so much more then medical jargon), it all makes a great motivator for sitting down and taking care of splitting up a hundred paged and growing manuscript so it's easier to work with.
Click to expand...
I just received a Stelara shot recently and I am wondering if it is becoming ineffective.
 
ronroush7 said:
I just received a Stelara shot recently and I am wondering if it is becoming ineffective.
Click to expand...

I always second guess myself wanting to believe declines in health/ wellness isn't because meds aren't working as optimally as they could be or have been. It bothers me to think about the dependency on treatment - without it at all, screwed, with an med that declines in effectiveness - just screwed at a slower pace. Figure it's just best not to walk down that line of thought :voodoo:

I read somewhere recently that biologics (on average) are only effective for 3-5 years. Currently 3rd time starting/ switching to Remicade and doubting how long it'll work due to that element, can up dose frequency and ml amount but that's a discussion to have with the doc. once we find a bit more stability. I've been curious about Stelera since it seems like there's an increasing number of crohn's patients with moderate to severely active disease giving it a shot. Have you been on it for some time? What's making you think it's becoming ineffective instead of possibly not being on the best dose/ frequency if it has that flexibility?
 
duh panda said:
I always second guess myself wanting to believe declines in health/ wellness isn't because meds aren't working as optimally as they could be or have been. It bothers me to think about the dependency on treatment - without it at all, screwed, with an med that declines in effectiveness - just screwed at a slower pace. Figure it's just best not to walk down that line of thought :voodoo:

I read somewhere recently that biologics (on average) are only effective for 3-5 years. Currently 3rd time starting/ switching to Remicade and doubting how long it'll work due to that element, can up dose frequency and ml amount but that's a discussion to have with the doc. once we find a bit more stability. I've been curious about Stelera since it seems like there's an increasing number of crohn's patients with moderate to severely active disease giving it a shot. Have you been on it for some time? What's making you think it's becoming ineffective instead of possibly not being on the best dose/ frequency if it has that flexibility?
Click to expand...
They might just have to adjust the dose. I was on Cimzia for a while. It failed after a while. I was on Remicade but took myself off. My doctor put me back on after my resection. My body developed a rare allergic reaction. I had a lesion in my scalp which did not respond to antibiotic. I had to have it removed surgically. I have been on Stelara probably two or three years.
 
duh panda said:
I always second guess myself wanting to believe declines in health/ wellness isn't because meds aren't working as optimally as they could be or have been. It bothers me to think about the dependency on treatment - without it at all, screwed, with an med that declines in effectiveness - just screwed at a slower pace. Figure it's just best not to walk down that line of thought :voodoo:

I read somewhere recently that biologics (on average) are only effective for 3-5 years. Currently 3rd time starting/ switching to Remicade and doubting how long it'll work due to that element, can up dose frequency and ml amount but that's a discussion to have with the doc. once we find a bit more stability. I've been curious about Stelera since it seems like there's an increasing number of crohn's patients with moderate to severely active disease giving it a shot. Have you been on it for some time? What's making you think it's becoming ineffective instead of possibly not being on the best dose/ frequency if it has that flexibility?
Click to expand...
To answer your question, I seem to be going to the bathroom more and that is what makes me think it is becoming ineffective along with my psorasis seems to be more active.
 
ronroush7 said:
Can ketchup or greasy chips cause a stomach cramp?
Click to expand...

Hope things improve for you and you and your team can figure out how to get everything back in a happier spot!

Chips are brutal for me - even when doing well, chips are a sure way to spending a miserable 24 to 48 hours after - usually end up with bad cramping or just a lot of GI gas/ bloating followed by cramping. Unpleasant either way. Greasier they are the quicker the negative effects and longer it seems to last, could be due to higher fat content since gut will struggle to break down and absorb fats when there's heavy inflammation. Baked chips tend to be okay, but what's the point of eating a baked chip? Blehh.

High sugars/ acidity of ketchup I find irritating when things are aggravated, tolerable otherwise.
 
I'm having a really rough few days and contemplating going to the ER. I've had miserable cramping, constant runs, blood in my stool, etc. I always have a hard time deciding if I should tough it out or go to the ER, so I don't know what to do. For pain and anxiety, I'm on Tramadol and Klonopin but the pain is so bad that it isn't doing anything. Not sure what to do.
 
I was walking our dog. I felt the need to go to the bathroom. On the way home, I started having pain in my abdomen. Can this be caused by spasming or a flare?
 
ronroush7 said:
I was walking our dog. I felt the need to go to the bathroom. On the way home, I started having pain in my abdomen. Can this be caused by spasming or a flare?
Click to expand...

Hi ronroush7, the pain could be what you said but may also be wind , ( that one gets me at times n i wonder if im starting up again) has it gone yet ?, if not give your doc a ring and get his advice, just for peace of mind mate , best wishes ...
 
Glad the pain has eased , oh how we suffer in bathrooms, there has been times when i could have done with one on wheels to drag round with me.. maybe we should invent one !! we could make a fortune , tho dont think i could charge my fellow suffers .. take care ron best wishes .
 
Blech!!!!!

Started with a head/sinus cold a couple days ago, night before last I ran a low grade fever (99+) and stayed home from work yesterday.....was better last night with the help of some night time medicine lol....felt blah today at work but no fever....still sniffling and coughing and going to bed soon......
 
ak23 said:
Thanks, I did. I got steroids and some medicine to relieve my pain. They also did an xray and now I'm following up with my GI
Click to expand...

Hi i am glad you saw your doc n that you will get some relief now, hopefully they will get you on the right track n meds to help keep you well, best wishes n take care now ...
 
I keep needing to go to the bathroom. I am not sure what it was but once today I saw something mixed in with the stool.

2
 
Quick question (and sorry if this is TMI): I've been going to the bathroom A LOT, to the point that I'm having a lot of pain down there. I use the most expensive toilet paper and I've tried things like Vasaline and - when the pain is at its worst - some of the pain medicine pills from my recent ER visit. The pain medicine pills help the most, but even still it doesn't entirely get rid of the pain and it hurts to walk or sit. Any tips to alleviate this rectal pain from going to the bathroom and wiping so much?
 
ak23 said:
Quick question (and sorry if this is TMI): I've been going to the bathroom A LOT, to the point that I'm having a lot of pain down there. I use the most expensive toilet paper and I've tried things like Vasaline and - when the pain is at its worst - some of the pain medicine pills from my recent ER visit. The pain medicine pills help the most, but even still it doesn't entirely get rid of the pain and it hurts to walk or sit. Any tips to alleviate this rectal pain from going to the bathroom and wiping so much?
Click to expand...

Baby wipes - seriously, the best TP in the world can't compare to that level of soothing even with fissures. Made life so much better after switching to wipes for my crohn's needs. I like Bert's Bee's since I find they've been the least irritating for my very sensitive skin being chlorine free and that the vitamin E/ aloe is more soothing when dealing with rectal pain and spasming then alternatives not containing.
 
ak23 said:
Quick question (and sorry if this is TMI): I've been going to the bathroom A LOT, to the point that I'm having a lot of pain down there. I use the most expensive toilet paper and I've tried things like Vasaline and - when the pain is at its worst - some of the pain medicine pills from my recent ER visit. The pain medicine pills help the most, but even still it doesn't entirely get rid of the pain and it hurts to walk or sit. Any tips to alleviate this rectal pain from going to the bathroom and wiping so much?
Click to expand...

Hi i used the moist toilet wipes with aloe vera in them,(Asda/Walmart)own brand, also sudocrem, and aqueous cream from local chemist, and i also had an hydrocortisone cream from my doc, which i used on occasion. wipe the worst away with tp n then clean with moist wipes, after you used the wipe dont rub dry just pat it to take the dampness off or you will wipe of the aloe that is going to help, but do so as gently as you can to avoid as irritating the area as much. you could use baby wipes too but try to get them with the aloe vera as it does soothe and heal the skin . good luck n best wishes ..
 
No problem n good luck. Hope things improve quickly for you ..btw get the flushable ones makes life easier if you can wipe n flush instead of using a bin ..
 
So glad the last 2 years finally seem to be settling down. It's like I can poop normal again, at least for a bit after infusions. Gotta love those periods of time where things are a bit more manageable. Now, only exhaustion/ fatigue really takes me completely out of my days. Start the day with so many goals and end them all the same - picking my self up from wherever I fall asleep - at the dinner table, at the computer, outside on the porch, on the couch watching tv. I feel like somehow the waking up randomly in odd places at odd hours after never consciously deciding to fall asleep should be a children's book.
 
Hi duh panda glad things are improving for you, fatigue is it's own pain in the arse ... Maybe you should write that book n make some cash off of it.That will teach the fatigue a lesson lol. Take care my friend ..
 
Thanks MandyK - Currently working on a couple longer manuscripts, never know though maybe one day I'll tailor my focus toward children's stories :) Hope you're having a great Tuesday.
 
Well, I felt better over the weekend, wrote up this morning with a mother of a headache and sore throat.....made it through most of the day at work, then my temp started to slowly climb and at last check was 100.7- so it is still going up.

Ugh.....i really hate being sick, may need to call the doctor tomorrow, plus go find my blood pressure medication as that is all wonky too.
 
Your welcome duh panda. Ha well i didnt know you wrote!! :) take care ..
Lisa as Ronroush said ring docs, hope you feel better soon..
Hugs to all x
 
Went to the doc yesterday morning, called at 730am and was seen by 9.....

Nurse came in to do a quick strep test and made a comment that a lot of people had been in lately with negative results....:shifty-t::shifty-t: .....PA came in to see me and his first reaction when he looked at my throat was "wow"! Lol.....

No surprise, test was positive for strep.....I saw the nurse before I left and she said it was a very quick positive too!

On amoxicillin for ten days.....joy.....hope it doesn't mess with me too badly!
 
I am retired because of the Crohn's. It had me up after five this morning. Then again three hours later. Then after nine. I feel like going back to bed regardless of the time.
 
Lisa get well soon hun x
Ron if you wana go to bed love you go ,sod the time of day get the rest if you need it. X
Im off to bed up at half 5 this morning worked nine hours today. Bloody knackered lol . Love to all x
 
teeny5 said:
Tired, tired, and more tired. Work is kicking my butt this week :thumbdown:
Click to expand...
i wish i could work...its been a week and these setons are kicking my butt. the pain is incredible ans i cant weat granny panties cuz they cut into one of the holes. so depressed...
 
Feeling like so so tired i need a holiday me thinks, but cant afford one :( Oh well il carry on i guess . Hugs n love to all, you all take care now x
 
Feeling like so so tired i need a holiday me thinks, but cant afford one :( Oh well il carry on i guess . Hugs n love to all, you all take care now x
 
Looking like a pretty rough weekend so far on here. Hope everyone can find a bit of comfort and something worth smiling for today :)

Gut's been okay - not horrible, not ideal, just okay. I'll take okay. I need to seriously run some errands today, should be a long/ tiring but good day. Always love going grocery shopping since it means more options in the kitchen. Was feeling a bit more ambitious this morning then usual and tried a new thing with my hair. It turned out awesome (which is saying something since it's in an awkward spot working to grow out a pixie).
 
flaring again - had 16th hospital admission last month and being sent to a professor for assesment because my GI seems a bit stuck with what to do with me. Can't eat and feel stuck in groundhog day
 
lilac said:
flaring again - had 16th hospital admission last month and being sent to a professor for assesment because my GI seems a bit stuck with what to do with me. Can't eat and feel stuck in groundhog day
Click to expand...
so sorry lilac 😳 these gastro issues are physically and mentally taxing!!! just know you are not alone....we are all here for you.☺ hang in there...prayers on the way!
 
Ha looks like im so tired i cant count.. Posted my last msg twice doh!!!
Im off to bed now but wanted to wish you all well b4 i sleep. You will all be in the prayers i say very shortly. God bless you all x
 
I think the amoxicillin is kicking my butt.....throat feels better, but have a constant sinus headache/pressure that Tylenol doesn't touch.....and I'm out of God passion meds.....and I have a pretty much non productive cough that makes me want to cough up a lung.......Oh, and my fave is closed too, and I haven't even been drinking!!!!!
 
Lisa said:
I think the amoxicillin is kicking my butt.....throat feels better, but have a constant sinus headache/pressure that Tylenol doesn't touch.....and I'm out of God passion meds.....and I have a pretty much non productive cough that makes me want to cough up a lung.......Oh, and my fave is closed too, and I haven't even been drinking!!!!!
Click to expand...
Probiotics might help while you are on the amoxocillin. Hope you feel better.
 
I hurt, that's how I am feeling. I imagine most everyone on here hurts too. How do people deal with it? I am doubled over, don't know what's "normal" any more or who to see about what. This whole process has been so frustrating and isolating. I am tired all the time, so can't deal well with anything. Then I feel bad because there are so many much, much worse than I am and I feel whiny, which I don't like. Sigh...I just don't like me or my body, period!

There, got that off my chest, haha.

Hope everyone else is having a pleasant evening. Cheers to all.
 
MoCo said:
I hurt, that's how I am feeling. I imagine most everyone on here hurts too. How do people deal with it? I am doubled over, don't know what's "normal" any more or who to see about what. This whole process has been so frustrating and isolating. I am tired all the time, so can't deal well with anything. Then I feel bad because there are so many much, much worse than I am and I feel whiny, which I don't like. Sigh...I just don't like me or my body, period!

There, got that off my chest, haha.

Hope everyone else is having a pleasant evening. Cheers to all.
Click to expand...
its an too familiar feeling....
 
I'm having a really rough day. Cramping and I'm back to using the restroom about 20 times per day. I don't get it. I went to the ER last week and was put on Prednisone, but now it seems like my body is back to acting up. I've been taking Tramadol, which usually helps the pain and to slow me down, but it's not helping. I'm calling my doctor tomorrow because I feel like I'm back at square one with the cramps and bathroom issues. Even sitting has become excruciating. I just don't know what to do. I just took my latest Humira dose and I'm hoping it helps, but we'll see.
 
ak23 , sorry your suffering love, it is a horrid thing at times this disease, i want to kill it so none of us have to suffer it any more .. ye please go back to your docs n try to get more help so that you feel better .. hugs n best wishes from me to you. Take care n take it as easy as you can ..
 
Hope everyone else is doing good and enjoying it! Don't take today for granted! Have a wonderful one. Hopefully I'll be joining you guys feeling better in no time. 👍🏻
 
mandyk said:
ak23 , sorry your suffering love, it is a horrid thing at times this disease, i want to kill it so none of us have to suffer it any more .. ye please go back to your docs n try to get more help so that you feel better .. hugs n best wishes from me to you. Take care n take it as easy as you can ..
Click to expand...

Thanks, I appreciate it! Let's hope this is just a short little flare and then I'm back to normal! Have a great day.
 
Hey Ron dont let him/her dismiss it,put your foot down with a firm hand n stand your ground till you get a resolution on it mate. I dont let docs dismiss me on anything any more. I learnt that the hard hard way. Good luck n dont take any fobbing off !!
 
:) hope u have a good day Ron, im on my way to work. Glad i have data on my fone,it comes in handy when traveling an hour on the bus lol . It wiles away the time :) ..
 
ronroush7 said:
Have a blessed day, Mandy.
Click to expand...

happy day to you ron!!!! i also wonder why most GIs are dismissive of alot of things! when i was first diagnosed almost 30 years ago, i asked my doc what i could expect in years to come and his exact words were "you dont want to know"! i suppose the plethora of ways this disease can consume us leaves many scratching their heads. take "bloating" for instance....it could mean so many things...where do you start? keep after the doctor! you are the patient and your healthcare team should go to the ends of the earth to help you!!!!...sigh...if it were only a perfect world....carry on friend...you are in my prayers.☺
 
penhow45 said:
happy day to you ron!!!! i also wonder why most GIs are dismissive of alot of things! when i was first diagnosed almost 30 years ago, i asked my doc what i could expect in years to come and his exact words were "you dont want to know"! i suppose the plethora of ways this disease can consume us leaves many scratching their heads. take "bloating" for instance....it could mean so many things...where do you start? keep after the doctor! you are the patient and your healthcare team should go to the ends of the earth to help you!!!!...sigh...if it were only a perfect world....carry on friend...you are in my prayers.☺
Click to expand...
Thanks. I just got a call and they said my fecal calprotectin was normal but it seems like my urine test was lost. I go back and forth between bloating or going to the bathroom a lot with occasional bleeding. Forgive me if I am repeating myself. Can these symptoms occur from your intestines spasming? Sending prayers your way.
 

Similar threads

valleysangel92
Hello Old Friends
Replies
1
Views
253
my little penguin
my little penguin
thike1966
Hotel Crohn's Forever, The Return Of The Fistula
Replies
0
Views
505
thike1966
thike1966
L
How to travel overseas with 1 year of Skyrizi? let's brainstorm
Replies
13
Views
3K
nofun
N
R
Nearly 4.5 years in with Crohn's.
Replies
2
Views
1K
ras96mg
R
A
What would you do?
Replies
22
Views
2K
Delta_hippo
D

Latest posts

Back
Top