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How are you feeling today?

valleysangel92

valleysangel92

Moderator
Staff member
Neohic - I'm sorry you've gotten no further. I understand how frustrating this is. My last MRI was clear, after spending 2 weeks in hospital on IVs I wasn't amused either. However, this does not mean there is nothing wrong. Luckily my consultant also did fecal cal testing which did show inflammation, so we had evidence of a flare which allowed him to give me better treatment.

Don't give up. Tests come back normal for loads of reasons. For example, you might have microscopic inflammation which would be enough to cause symptoms but would not show up on an MRI scan. When my MRI was clear, my consultant merely used it as a way to say I could go home and didn't need surgery and wasn't at risk of a blockage, rather than as a sign nothing was wrong.

Keep pushing your doctors, make sure they look further.
 
duh panda

duh panda

Location
Denver, CO
For months I've been doing good managing the nightly pain that I experience from my crohn's. Usually I can get it into a cycle of sorts when i'm really good about keeping meal times and amounts consistent, taking meds at exact times every day etc. but tonight has been a piece of work. For the first time in a long time I was SCARED by the pain. Terrified even, and I hate how weak this fear can make me feel because I know I'll pull through, be fine, make it off the toilet and into my bed where I can pass out till it wakes me back up sometime in the morning.

Since moving back to live with my mom while sorting out medical logistics of moving and getting reestablished while in the middle of a flare 1000 miles away tonight was the first night I truly panicked when the pain hit. It was also the first night I dealt with the terror alone so to speak as while I have her support financially for as long as I remain under her roof there is minimal emotional/ mental support to help cope with moments like tonight. I simply know better to ask as when I do it simply causes more stress which = more pain/ struggle etc. It's simply been too long since i've lived with family and i'm not willing to put in the energy to retrain/ teach them on what it takes.

It certainly doesn't help that I've simply been missing my S.O. - who's been a more primary part of my fight with crohn's then my own family since point of diagnosis - and remained in CO to try to get everything setup so there's a home and stable foundation to return to.

Crohn's can F off tonight. I'm ready for my next dose of Entyvio like, now, as I have seen an overall slight improvement in lowered general pain for the first time in nearing a year and hope for the first time since what stability i had achieved since diagnosis started slipping as this flare started it's hold over 2ish years ago. I am hopeful, I don't just want to live - but want to live well and for the first time in a long time that looks possible, but i'm so over it all tonight.

Wishing everyone the best tomorrow as you tackle the day!
 
A

Ann Morgan

Location
Arizona
stelarjess said:
The fatigue is overwhelming this morning. My iron infusion is this Thursday and can't come soon enough. I feel guilty for, once again, not making it to work.
Click to expand...
What is an iron infusion?
I had a blood transfusion in 2009.
I WAS taking two iron pills a day ( over the counter )
for several years until my new Primary Care Physician
said that my iron levels were okay and I did not
have to take the iron pills any longer ! If I end
up in the hospital for a blood transfusion I will
really be pissed off by this new doctor.
I am taking a B12 vitamin each day ( over the counter )
but I have had the injections in the past.
I also take a D3 vitamin each day ( over the counter )
and Fosamax ( prescription ) for my bones.

:ysmile:
 
A

Ann Morgan

Location
Arizona
Gram214 said:
Stellarjess..don't feel guilty for missing work. Any one of your co-workers would do the same if they felt like you. I used to practically crawl to the time clock in the mornings at my job. I was a CNA in a nursing home night shift for 15 years. Taking off work was a major no- no there. No sympathy when dealing with that corporation. At times my knees would look like cantaloupes and if it wasn't for the residents bathrooms..which BTW we were not allowed to use...ughhhh !! It would have gotten very ugly. I finally had enough and had to apply for SSDI . I was granted that after the first try and even though it's not much it's better than nothing . I shudder at the thought of them reviewing my case . I imagine with the funds running out as we're told constantly by the media it would be easy for them come up with a way to say "NO MORE" . !!
I never had an iron infusion..they give me packed red blood cells when I get badly anemic ? I too am having that overwhelming fatigue and just had my Remicade infusion last Monday. I get sick on iron pills..you too ?
I can't imagine working anymore. I struggle just doing basic things here at home . Only outlets I have are grocery shopping (even that is starting to be too much my feet kill me less than half way through ) and Dr. appt.s . I would have someone shop for me but it's the only chance I get to see the world. Pretty pathetic...huh ?
I'm older yes ..but I have friends who are my age and enjoying the freedom of retirement and I can't help but feel a tad jealous at times. If they only knew how lucky they are to be healthy...to trade places for a day would do it for them. Sigh
Hang in there girl better days ahead..? Sorry for the long story.
Click to expand...
You said so many things that I can relate to. I just started collecting SSD benefits as of January 2013. I am 54 years old and I have multiple physical issues and mental health issues too. I think I was told that I would be reviewed in three years ( not seven years like some people do ). If they think I can really work, then they are just wrong. I don't want to be homeless and if they take away my benefits I would be. I live alone and my parents are dead and I have no friends. My sister lives in another state and she already supported me once, financially, in 2012, when my Unemployment Benefits ran out and I had no health insurance. I could not ever ask her for any more assistance, she GAVE me the money the last time I needed help. She did not BORROW it to me. I don't have to pay it back.

I am tired every day too. But it is more than tired, it is fatigue. I am only 54 years old but I started to "not feel good" about 20 years ago. Little by little,over the years,my body and my brain just ran out of steam.

OMG, when you were talking about grocery shopping and doctors appointments I thought you were talking about me ! I am seeing five different Specialists for different things: Gastroenterologist, Endocrinologist, Orthopedist, Rheumatologist and Urologist. As far as the grocery store..... hey, Safeway.com has an online grocery shopping website in my area. I can order groceries online and have them delivered to my door ! It is the greatest thing ever for a person who may be fatigued or a person who cannot lift a lot of weight, or a person who cannot reach very high. I have to admit that I love the online shopping ( the fee is anywhere from $3.95 to $12.95 for each delivery ). But I cannot online shop all of the time because I really need to get out of my apartment as much as I can so that I don't get isolated and depressed.

My sister has RA and she can do gardening and she can lift things.
I can't lift much weight at all. She must have some good medications.
I am getting Physical Therapy on my shoulders starting tomorrow.
I have osteoarthritis in them ? I wish my doctors would just
all get together and just give me some pain medication of some sort.
My Rheumatologist IS recommending a Pain Management Specialist
for my neck problems. I have almost zero percent mobility moving
my neck up and down. And I have limited mobility moving my neck
side to side. I already had ten sessions of PT on my neck.
Rheumatologist is mentioning Botox injections. Yikes !
I will have to really think about that. I am going to wait
to see a Pain Management Specialist for a while since I am seeing
so many other doctors. Maybe after I finish my shoulder
Occupational Therapy I will look up a Pain Management
Specialist then. ( Okay, I have arthritis in my hips too ).
What the heck happened to me !

Sorry this is so long. Haven't written for ten days.
 
RowdyRowdy

RowdyRowdy

I'm interested to find something out: what's the point of all this? Not asking this cynically or caustically.... But sincerely, one crohnnie to another. What's the point of colonoscopies, fistulas, sections, prednisone, hospital stays, colostomies, re sections, and biologics? Okay...go.
 
duh panda

duh panda

Location
Denver, CO
For me the point of it all is to improve overall well-being (regarding the medical side of things and trying to keep the disease at an optimal point of functionality, which doesn't necessarily mean the textbook definition of remission for me). <- That is what I base my medical decision on - such as spending spare time researching/ learning about the human body, disease itself, and whether or not to keep pursing drug options vs. surgery etc.

As for the fistulas and actual symptoms/ having the disease itself - who knows. I know I've become a more resilient person for it - I've learned things such as how to manage pain, know my body, etc. that many don't try to discern until much later in life. An ability to perceive myself and all individuals as independent yet interconnected realizing asking for assistance isn't a negative. In many ways I think once the symptoms are under control it'll be like gaining time - the hospital stays, bed rest, night spent in instead of out are always well spend - my tool box is more complete in how having a disease like crohn's adds to rather then takes from my life compared to peers (that said, there's always a trade off). Also, maybe one day all of it will allow me to be there for others the way they've been there for me and offer the empathy and a bit of understanding/ guidance I desire rather then cold sympathy or pity that's often shown instead.

So yep, there you have it. The point is what anyone chooses to make of the situation no matter what it may entail.

Rowdy, what do you think is the point of it all? I think this is such a great question to ponder!
 
dave13

dave13

Forum Monitor
Location
Maine
What's the point? Not to be flippant,it really depends on what day/moment you ask me. ie-just thinking about an answer to that question exhausts me today.I'm not usually at a loss for words.
 
nogutsnoglory

nogutsnoglory

Moderator
I agree Dave, it's so day by day, hour by hour, minute by minute really! Today I feel like I have the flu and it's from over exertion yesterday. Just thinking makes me exhausted!
 
Gram214

Gram214

Hi all...the way I see it...I try and try to carry on mostly for my loved ones . Human loves and fur ones. Also as bad as things get at times I know there's many who have it far worse . I at least don't have to watch my children or grandchildren die from disease or starvation in front of my eyes . I;m lucky enough to have a roof over my head , food , a loving husband who stands by me always , my grown children who are all doing well, I have my sight, my hearing, and my mind ( at times) . Sooo much to be thankful for.
When I go out and about I at least try to smile at other people no matter how bad I'm feeling . My wish for all of you who are feeling very poorly right now is to know that better days will come . God bless
 
Phil5813

Phil5813

Today I passed a lot of blood after breakfast. I got a huge craving for biscuits and gravy last night, so my mother and I cooked them up and added bacon bits to the gravy.

It was the best thing I had in a long time! It tasted SO GOOD...and the first round went through okay. But when I had leftovers for breakfast, it was punishing. Needless to say, that craving is gone.

We're gonna try stewed apples pretty soon as well.
 
S

syzygy

So frustrated today. I had to be really on my game at work and it wasn't easy having to run off with D throughout the day. I've been eating decently, managing stress decently, and whammo. Grrr......
 
dave13

dave13

Forum Monitor
Location
Maine
I do feel fortunate most days.Some days it is the non-disease issues,other facets of life, particularly medical expenses. I feel so overwhelmed with debt at times.I worry.

I'll fight until my dying breath and appreciate what I have.I just get tired...
 
D

Deleted member 400815

Guest
Hungry. Nothing but a clear liquid diet today when I'm used to small snacks throughout the day.
 
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Gram214

Gram214

Hang in there neohic. I understand completely...it's always feels like such a long day but before you know it you'll be at the center having your little nap and you'll be waking up to "you're procedure is all through " . Did you try a little beef broth ? The saltiness might offset your hunger a tad. Thinking of you..
 
D

Deleted member 400815

Guest
Yup... tried broth and I think it just made things worse. I called to asked if coffee is fine to have and got the go-ahead. Seems to tide me over a little better but I'm not sure what I'll be doing with myself through the evening. Not used to caffeine all day. :eek2:

Counting down to 1:00 tomorrow.
 
Polaris

Polaris

In a lot of pain today (and the past week or so). My family doesn't realize that pain changes you - yes I'm going to be cranky, it's impossible for me to pretend to be in a good mood when I'm doubled over in pain 30x/day.

Also, please don't ask what's wrong, and then try to relate to my pain by stating you have a headache. (My fiance). I love my family but sometimes I just want to punch someone.

/rant.
 
D

Deleted member 400815

Guest
stelarjess said:
... My family doesn't realize that pain changes you ...
Click to expand...
^This. My family is the same way that when I talk to them about it they just don't understand. Anytime they try and sympathize it always comes off as "had a terrible headache" or "remember when so-and-so broke his wrist?" or "so-and-so has been stressed out too". Just about every time I can respond with, "Yeah... but they got better."

Sorry for your pain today.
 
D

Deleted member 400815

Guest
Had my colonoscopy this afternoon and I've got mixed emotions again. Kind of feels like my last MRI results when that came back looking pretty clean. My doctor seemed a little stumped by the whole thing too. He suggested peppermint oil to see if that'll calm things down.

Really was hoping that there would've been that "Oh! That's what it was all along!" moment...
 
indianhart

indianhart

Boy can I relate to each one of you. But we have to forgive them because they don't know how it is to live with this disease. I have Crohns and have pain most days whether it's belly, joint, exhaustion. This is the cross we have to bear and some days are better than others. We can't ask people to understand because they just won't unless your one of us! Let's do our best to enjoy each moment without pain (which for us may not be many). We are very lucky to have a forum like this to come to and people can relate to us. Try and have a good and painfree day all my Crohnies!!!
 
Tony H

Tony H

Well-known member
pred has worked its magic on the cramps and d , but the joint pain is off the charts , the doc had prescribed new pain meds palexia (tapentadol) hopefully they will give my aching joints some relief .
 
A

Ann Morgan

Location
Arizona
Gram: I LOVE WHAT YOU SAID ! When I am feeling really down ( physically and

mentally ) I make a Gratitude List ( either in my head, verbally or in writing ).

Gratitude Lists are great things. Also, if you are feeling down, you can write down

any of your accomplishments or achievements ( from the past or from the present ).

The accomplishments can be what other people call "little things" but for us are

"big things". When you think about your successes instead of your failures

you can change your thinking around for the better. I don't have the support

that you have ( human or furry ones ) , but I am trying to seek out support

from local organizations and programs within my community. My two cats

have been gone now since 2009. They were my "forever friends" for 12 years.

My parents are both dead now. And my only sister lives out of state. It's

really hard to cope on your own. I am hoping to find some friends in the

future. I believe there is a local Crohn's Support Group in my city, so I could

try to participate in that and maybe find some folks I can be friends with.

Thanks for listening. ( PS: I was replying to what you wrote on 10-6-14 ).:eek:
 
A

Ann Morgan

Location
Arizona
stelarjess said:
In a lot of pain today (and the past week or so). My family doesn't realize that pain changes you - yes I'm going to be cranky, it's impossible for me to pretend to be in a good mood when I'm doubled over in pain 30x/day.

Also, please don't ask what's wrong, and then try to relate to my pain by stating you have a headache. (My fiance). I love my family but sometimes I just want to punch someone.

/rant.
Click to expand...

My sister doesn't understand either.
I was recently at a bank. All of a sudden I felt a strong urge to have a bowel movement. I was in a panic because banks do not have restrooms. I walked as fast as I could to the Verizon store right next to the bank ( same attached building ). I politely asked the employee standing at the counter if I could use their restroom and I said that this was an emergency ! He was kind enough to allow me to use their restroom ( which is not open to customers ) , in the back of their store. Thank God for that guy.
 
UnXmas

UnXmas

stelarjess said:
In a lot of pain today (and the past week or so). My family doesn't realize that pain changes you - yes I'm going to be cranky, it's impossible for me to pretend to be in a good mood when I'm doubled over in pain 30x/day.

Also, please don't ask what's wrong, and then try to relate to my pain by stating you have a headache. (My fiance). I love my family but sometimes I just want to punch someone.

/rant.
Click to expand...
I'm not sure. Pain definitely changes you, but sometimes I think friends and family can't win. I know I sometimes get annoyed if they try to sympathise, but other times I get annoyed if I'm sick and they don't respond. I think you have to tell people what kind of reaction you'd like to have at any given time - e.g. "can you just let me have some time to myself for a bit?", "can you help me take my mind off the pain", etc. It's hard for people to know what to do, especially when they can't relate. Trying to say they relate, even if they reference some really minor ailment that pales in comparison to what you're going through, may be the only thing they can think of to say.
 
lilac

lilac

totally rubbish. Managed to get down to 10mg pred which is when I typically flare and need hospital admission : / Determined its not happening this time. Mouth is killing me with ulcers and thrush. I'll spare you the details of the other end :ymad: Hugs to everyone feeling crappy
 
BlackButterflies

BlackButterflies

I am too exhausted and I shouldn't let this bother me but it is so here I am to get it out - thanks to this forum for being here. Went to my first holiday extended family meal since diagnosis. Zero items I could eat. Everyone laughed and made jokes the entire time. I ate some of my safe foods before because I was afraid there would be nothing so at least I wasn't starving. It's so disappointing. I was offered raw carrots and celery as an alternative. I never thought I was a good liar until this meal - I smiled and laughed with them and watched them all eat. I guess it was wrong to assume they would have a few safe foods when the hosting family is my own and knew my food limits and certain safe foods. Is this a simple lack of caring or sheer idiocy because I just don't get it. I've seen them go out of their way before when my brother thought he was celiac. It was a very cold family get together - I did not feel welcome or wanted there in the slightest. I got a lot of looks from certain family members and the one child that repeats everything his mother says told me I need to stop over-exaggerating. She was the hostess. I really need to not be bitter about this and just focus on my health. I felt like a complete stranger for the first time surrounded by another family. I don't want to go back.
 
RowdyRowdy

RowdyRowdy

Butterflies....indeed. I've both ostracized and been ostracized by my family due in no small part to this disease. I am thankful my wife and kids know how awful Crohn's really is and if it were not for them, I'd have no one to walk through this with me.
 
Tamera

Tamera

Location
Georgia,US
Today has been horrible!
The small bowel follow through should've only taken 2 hours mine took 4, because I have some type of stoppage in my small intestines.
The fluroscopy had to be pressed down on my stomach which was already at a pain score of 8 and I had to miss work again! Ugh

Thank God and Clinton for FMLA! I need the job for the insurance.
Finally my thrush mouth is calming down but I have yet another test before Crohn's disease will be diagnosed.:redface:
 
UnXmas

UnXmas

BlackButterflies said:
I am too exhausted and I shouldn't let this bother me but it is so here I am to get it out - thanks to this forum for being here. Went to my first holiday extended family meal since diagnosis. Zero items I could eat. Everyone laughed and made jokes the entire time. I ate some of my safe foods before because I was afraid there would be nothing so at least I wasn't starving. It's so disappointing. I was offered raw carrots and celery as an alternative. I never thought I was a good liar until this meal - I smiled and laughed with them and watched them all eat. I guess it was wrong to assume they would have a few safe foods when the hosting family is my own and knew my food limits and certain safe foods. Is this a simple lack of caring or sheer idiocy because I just don't get it. I've seen them go out of their way before when my brother thought he was celiac. It was a very cold family get together - I did not feel welcome or wanted there in the slightest. I got a lot of looks from certain family members and the one child that repeats everything his mother says told me I need to stop over-exaggerating. She was the hostess. I really need to not be bitter about this and just focus on my health. I felt like a complete stranger for the first time surrounded by another family. I don't want to go back.
Click to expand...
Would you feel to awkward bringing your own food to future such occasions? Or skipping eating altogether? My close family understands and caters to my diet very well (my mum is more paranoid about my stoma blocking than I am), but I have gone out to many meals with acquaintances where I simply didn't eat. Even if suitable food was available, in the days before I had a stoma, eating anything could make me need the bathroom and always made me feel bloated and horrible, and I found it just wasn't worth it to eat for the sake of appearing normal.

Christmas is coming up and I plan to eat my Christmas dinner with my family, but besides that I have no plans to eat with others. They will either understand or they won't and may think I'm weird, but at least I won't be any more physically uncomfortable than I need to be.

I'm very sorry it's your family and not mere acquaintances who put you through this though. :hug:
 
UnXmas

UnXmas

Today, I've run out of codeine, so I feel ill and miserable, even though it's my own fault for not pacing my doses properly.
 
S

syzygy

Ann Morgan said:
Gram: I LOVE WHAT YOU SAID ! When I am feeling really down ( physically and

mentally ) I make a Gratitude List ( either in my head, verbally or in writing ).

Gratitude Lists are great things. Also, if you are feeling down, you can write down

any of your accomplishments or achievements ( from the past or from the present ).

The accomplishments can be what other people call "little things" but for us are

"big things". When you think about your successes instead of your failures

you can change your thinking around for the better. I don't have the support

that you have ( human or furry ones ) , but I am trying to seek out support

from local organizations and programs within my community. My two cats

have been gone now since 2009. They were my "forever friends" for 12 years.

My parents are both dead now. And my only sister lives out of state. It's

really hard to cope on your own. I am hoping to find some friends in the

future. I believe there is a local Crohn's Support Group in my city, so I could

try to participate in that and maybe find some folks I can be friends with.

Thanks for listening. ( PS: I was replying to what you wrote on 10-6-14 ).:eek:
Click to expand...
Ann, I love the point on gratitude. Our family does "Thankfuls" every night before meals as a way of bringing some positive focus and awareness of the things that are going well in our lives. It's so easy for me to obsess on the things that are not going right and it's a good thing for me to have the daily practice of mindfully noticing the good things.

Hmm...I might just start a new thread on this...
 
Phil5813

Phil5813

I agree about the pain. I've developed a couple "ticks" (like drumming along with my teeth :) ) that help me keep my mind occupied, to the point that they've become autonomous. With or without the anger part of it, the pain is debilitating to the point that I'm too worn out to even speak with a clear voice...

Anyway, I've been doing really well with an elimination diet, but yesterday I caved and ate three McDonalds hamburgers, nothing but the patty and bun. Like the biscuits and gravy, they were delicious, but I paid the price today! I read on here that some people don't react to plain McD burgers, which completely boggles my mind.

Now that I think of it, maybe those other people weren't in a flare when trying the burgers...
 
dave13

dave13

Forum Monitor
Location
Maine
BlackButterflies-I'm sorry to hear about you not feeling welcome at a family gathering.My family has been cold and distant since my resection and diagnosis 11-13.I expected family support but got quite the opposite.I don't understand why.

I have had three operations and I have a sister that has not even contacted me to see how I am doing.I reach out but get voice mail and answering machines.Now I just keep to myself.I have not written them out of my life.If they want to talk,they know how to get a hold of me.I don't look forward to the holiday season at all.

Thanksgiving week will be one year since my resection,the Monday of Thanksgiving week was my resection.I don't want to spend Thanksgiving day with family that didn't visit me in the hospital.I feel it would be a lie to say I'm thankful to be with them on that day.I have plenty to be thankful for,but lack of family compassion is not one of them.

I love my family.I just don't want to be with them.

Thanksgiving is two months away and I already feel the anxiety.One day at a time,right?

A little cheese with my whine? :ylol:
 
UnXmas

UnXmas

Today I am worrying about my weight, as usual. I need to get it up in order to avoid hospital again, but I'm so worried about eating too much.

Also saying goodbye to visiting relatives today. Life just feels miserable because everyone else goes on, moving on with life, doing normal things.

Physically: ok as I have a new codeine prescription. Tired, debating whether to have an after-lunch nap right now, though I did sleep a lot better last night, no sleepwalking, which I'm very glad about. Getting awful hot flushes from prednisone (at least I know it's powerful and it's kicking in).

And I'm very pleased I've hopefully solved the problem of my leaking stoma by switching back to convex bags. I'll be pleased if this is true because it means I've solved it without having to make a long trip to the hospital to see the stoma nurses. It feels more secure with a convex bag, and I find them easier to get on right.
 
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UnXmas

UnXmas

Today I feel good that I slept well again. But need a nap now. Stressing over my weight - I stuffed myself with high-calorie foods yesterday because my weight had dropped, and felt awful. Today I ate food I felt like, and felt better about it, but much was low-calorie. Then again, even if I stuck with high-calorie foods and stuffed myself, I might lose weight anyway.
 
chuckmya

chuckmya

You know, this is the best I've felt in years!!! I have been undiagnosed for years so was not on any meds of any sort for the past 16 years. So finally comes a diagnosis after a lot of pushing and not taking no for an answer! So consequently was started on Entocort and Humira! Will start Entocort taper this week. I didn't really realize how miserable I have been all these years! I now have energy to do things, including exercise and cleaning my house! Just thought it was the aging process that was causing all my fatigue! My energy level is back and I feel great! Hope it continues!!!!:ylol::ylol:
 
snipars

snipars

Well today I started Entocort because of weight loss, had a slight feeling of nausea but it went away. Everything is going pretty alright so far!
 
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UnXmas

UnXmas

chuckmya said:
You know, this is the best I've felt in years!!! I have been undiagnosed for years so was not on any meds of any sort for the past 16 years. So finally comes a diagnosis after a lot of pushing and not taking no for an answer! So consequently was started on Entocort and Humira! Will start Entocort taper this week. I didn't really realize how miserable I have been all these years! I now have energy to do things, including exercise and cleaning my house! Just thought it was the aging process that was causing all my fatigue! My energy level is back and I feel great! Hope it continues!!!!:ylol::ylol:
Click to expand...
Glad to hear from someone on this forum with good news! :ghug:

Steroids can definitely give you energy! I feel so well when I'm taking them.
 
UnXmas

UnXmas

Today I am: Getting hot flushes from prednisone; Looking forward to seeing visiting relatives later and having something to take my mind off things; Trying to eat and eat enough to gain some weight.
 
UnXmas

UnXmas

UnXmas said:
Today I am: Getting hot flushes from prednisone; Looking forward to seeing visiting relatives later and having something to take my mind off things; Trying to eat and eat enough to gain some weight.
Click to expand...
Pretty much an exact repeat today.

The weather is all dark and windy and rainy and Autumnal, which I like. It's ridiculously warm for the time of year though, I wish it was colder. It makes me terribly nostalgic in a sad way though, for past Winters when things were normal.
 
S

syzygy

DJW said:
I haven't felt 'normal' in years.
Click to expand...
DJW, sorry to hear that things are rough. I started seeing a therapist around the time I was getting worked up with my diagnosis to deal with adjustment issues. It's been really helpful to be able to gnash my teeth, talk about fears about starting meds, and be able to openly talk through issues that would just worry my family and friends.

I think that psych meds can be amazing especially for adjusting mood and one's ability to engage life. They don't make real-life problems (i.e., Crohn's) go away though and counseling/therapy can help for support, problem-solving, and acceptance there.
 
sully1102

sully1102

Location
Manchester, NH
A week ago today I had minor surgery to dilate a stricture, drain a peri-rectal abscess, and place a seton to help with a fistula. For the past two months I had been dealing with increasing pain from the abscess, to the point that I finally had to ask for a prescription of pain killers just so I could attend a wedding.

But, the surgery has delivered on it's promises. Despite some tenderness around the seton, I'm pain free. My bowel movements are exactly what every Crohn's patients wishes for on a daily basis, and I'm seeing other benefits like a renewed appetite.

Today is a good day. It's great when treatments give such immediate results.
 
lilac

lilac

out of hospital yesterday - tired from another blast of steroids. Back to tapering, still can't eat right and feel like my colons never gonna calm down. Surprisingly upbeat though :tongue must be all thr drugs I'm now prescribed. Oh and now on humira weekly!
 
S

syzygy

Feeling a bit demoralized myself. Remicade start was fine, but four days later, I get my first partial obstruction in 6 months. I was really pretty panicky at first, but now just "blah..."
 
UnXmas

UnXmas

Going to try to have another day without codeine (yesterday I tried and failed). Need to make sure I'm on track with my weight for when I get weighed at the doctor's tomorrow, not quite sure how I'm going to manage that yet. Also feeling pretty bored, but that's probably because without the codeine I feel to rubbish to do much or concentrate on anything. :yfrown:
 
S

syzygy

3 days of D since the obstruction and I've been up and on the pot more than hourly for the past 4 hours. This is not normal for me and I can't believe it's right after starting Remicade. I have to try to get into the doc today. I want to cry.
 
UnXmas

UnXmas

I managed ok with not taking codeine yesterday. I've taken a little today, to stop withdrawal. I'm hoping that when I eat lunch the weight of the food will mean I've not dropped weight when I weigh this afternoon!
 
sammyb22

sammyb22

sick of feeling sick, sick of waiting, sick of it all at this point. Why should someone have to constantly wait for the next step. My doctor is such a turd
 
D

Deleted member 400815

Guest
For the first time in a while I can say that today I feel... okay. Been keeping busy working on my shop lately and I think it's been keeping my mind off of things. It was a nice change.
 
A

Ann Morgan

Location
Arizona
neohic said:
Had my colonoscopy this afternoon and I've got mixed emotions again. Kind of feels like my last MRI results when that came back looking pretty clean. My doctor seemed a little stumped by the whole thing too. He suggested peppermint oil to see if that'll calm things down.

Really was hoping that there would've been that "Oh! That's what it was all along!" moment...
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I know how you feel ! My Ulcerative Colitis symptoms changed drastically in May 2014. My old GI was not on my new health insurance plan. I had to find a new GI and then I had a colonoscopy in August. He said the colonoscopy came back normal. My new doctor said to discontinue my medications. SAY WHAT ! I had diarrhea for 17 years and I have been constipated since May of this year. My medications are two Questran Packets a day and two Lialda pills a day. I have been on these medications for a while now, especially the Questran. If I don't take the Questran at all, I get REALLY sick. Since May, if I take TWO Questran Packets a day I get constipated. So basically right now I am being my own doctor. I am experimenting with taking one Questran Packet a day instead of two and so far I am having bowel movements each day. I am not having terrible diarrhea or uncomfortable constipation. I occasionally have bloating and cramping and lose bowels, depending on what I ate. And I am still taking the Lialda too because I still have some pills left in my pill bottle. I don't care if the doctor says my colonoscopy is normal, I cannot quit taking the Questran. If my colon is "OK" then why would I get sick if I quit the Questran. I meet with him in November. I am going to ask for a Bile Malabsorption test. If I don't get a good vibe from this new doctor after my next visit, I am going to change doctors for sure. ( PS: My current GI doctor said to take my current medications "as needed". Well I DO need them ! ).
Thanks for listening.
 
A

Ann Morgan

Location
Arizona
indianhart said:
Boy can I relate to each one of you. But we have to forgive them because they don't know how it is to live with this disease. I have Crohns and have pain most days whether it's belly, joint, exhaustion. This is the cross we have to bear and some days are better than others. We can't ask people to understand because they just won't unless your one of us! Let's do our best to enjoy each moment without pain (which for us may not be many). We are very lucky to have a forum like this to come to and people can relate to us. Try and have a good and painfree day all my Crohnies!!!
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I have Ulcerative Colitis, Arthritis and I am tired every single day. I cannot accept that I am going to feel like this every single day for the rest of my life. There must be SOMETHING that someone in the medical field can do for me. I am going to see my Primary Care Physician on October 27th to talk to him about my fatigue. My sister also has fatigue and she has RA, in addition to other health problems. I am going to have my PCP check my iron levels, my B12, my thyroid levels and my Glucose. I will go nuts if I have to be tired/exhausted/fatigued ALL of the time. I would like to have at least one day, every once in a while, where I feel awake and somewhat energized. This fatigue effects every aspect of my life.
 
A

Ann Morgan

Location
Arizona
lisadc1 said:
Let's add a thyroid not working to my list of issues! Why not?!? >.<
My body is so messed up...
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I am the same way. I have so many things wrong with me that I get totally frustrated. I have a list in my purse with all of my health issues listed on it so when I see a new doctor I can just whip that list out of my purse and hand it to them. I also have a detailed medication list and a list of surgeries. I just hand them all of my papers and they photocopy them or scan them into their computers. I may get a few odd looks when I pull out my lists, but I don't care. They don't give me adequate room on the new doctor forms to give them the information that they need. I am 54 years old and I take many medications. I have a 74 year old Aunt that takes no medications at all. What's up with that ! :-0
 
A

Ann Morgan

Location
Arizona
Phil5813 said:
I agree about the pain. I've developed a couple "ticks" (like drumming along with my teeth :) ) that help me keep my mind occupied, to the point that they've become autonomous. With or without the anger part of it, the pain is debilitating to the point that I'm too worn out to even speak with a clear voice...

Anyway, I've been doing really well with an elimination diet, but yesterday I caved and ate three McDonalds hamburgers, nothing but the patty and bun. Like the biscuits and gravy, they were delicious, but I paid the price today! I read on here that some people don't react to plain McD burgers, which completely boggles my mind.

Now that I think of it, maybe those other people weren't in a flare when trying the burgers...
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Sometimes I do the same thing ! I will get a Big Mac from McDonalds or some tacos from Taco Bell or a sandwich from Arby's or chicken from Kentucky Fried Chicken or even the tacos from Jack In The Box. Recently I even bought a few donuts from Dunkin Donuts. I just miss food that has FLAVOR. What triggers bad symptoms for me is greasy foods. It is good that I bring these "treats" home and eat them in my apartment because I would not want to actually be eating these foods at the restaurants because I may be running for the nearest restroom right then and there. : - 0 I don't think I will ever be able to eat food with flavor without paying the price. : - (
 
A

Ann Morgan

Location
Arizona
UnXmas said:
Today I feel good that I slept well again. But need a nap now. Stressing over my weight - I stuffed myself with high-calorie foods yesterday because my weight had dropped, and felt awful. Today I ate food I felt like, and felt better about it, but much was low-calorie. Then again, even if I stuck with high-calorie foods and stuffed myself, I might lose weight anyway.
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I have lost 30 pounds this year and I believe it is because of my Ulcerative Colitis symptoms changing back in May 2014. I was not trying to lose weight but I lost 20 pounds in 7 weeks after having my symptoms change. Then I lost another 10 pounds in the months following. During the past month I have maintained my weight. I am obese and my doctors are happy about the weight loss. My thyroid doctor wants me to lose another 20 pounds. I keep trying to tell these doctors that I am losing weight but I am not trying to lose weight. I guess they don't care HOW I lose it, just so I lose it. I don't feel any better whatsoever after losing the weight. I don't feel healthier or happier. I am still wearing the same clothes, but the clothes are just baggy. : - 0
 
A

Ann Morgan

Location
Arizona
chuckmya said:
You know, this is the best I've felt in years!!! I have been undiagnosed for years so was not on any meds of any sort for the past 16 years. So finally comes a diagnosis after a lot of pushing and not taking no for an answer! So consequently was started on Entocort and Humira! Will start Entocort taper this week. I didn't really realize how miserable I have been all these years! I now have energy to do things, including exercise and cleaning my house! Just thought it was the aging process that was causing all my fatigue! My energy level is back and I feel great! Hope it continues!!!!:ylol::ylol:
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I am so happy that you have found the treatment that works for you !
It gives the rest of us hope.:dance:
 
A

Ann Morgan

Location
Arizona
sully1102 said:
A week ago today I had minor surgery to dilate a stricture, drain a peri-rectal abscess, and place a seton to help with a fistula. For the past two months I had been dealing with increasing pain from the abscess, to the point that I finally had to ask for a prescription of pain killers just so I could attend a wedding.

But, the surgery has delivered on it's promises. Despite some tenderness around the seton, I'm pain free. My bowel movements are exactly what every Crohn's patients wishes for on a daily basis, and I'm seeing other benefits like a renewed appetite.

Today is a good day. It's great when treatments give such immediate results.
Click to expand...
CONGRATULATIONS ! :dusty:
 
DJW

DJW

Forum Monitor
I had a great day. Saw some friends I hadn't seen in a while. Two married couple friends have daughters. One is 5 weeks the other is a year. Gruff Dave becomes a big Teddy bear with these two little angles. The little one fell asleep in my arms and the other just played cute with me the whole time. I'm good to do battle again.
 
UnXmas

UnXmas

Ann Morgan said:
I have Ulcerative Colitis, Arthritis and I am tired every single day. I cannot accept that I am going to feel like this every single day for the rest of my life. There must be SOMETHING that someone in the medical field can do for me. I am going to see my Primary Care Physician on October 27th to talk to him about my fatigue. My sister also has fatigue and she has RA, in addition to other health problems. I am going to have my PCP check my iron levels, my B12, my thyroid levels and my Glucose. I will go nuts if I have to be tired/exhausted/fatigued ALL of the time. I would like to have at least one day, every once in a while, where I feel awake and somewhat energized. This fatigue effects every aspect of my life.
Click to expand...
Have you ever been prescribed prednisone? I'm sure no doctor would prescribe it to treat fatigue, but if you ever need to be on it anyway, it may really increase your energy as a side-effect. Unfortunately it will most likely cause many side effects you don't want as well though.
 
UnXmas

UnXmas

I have lost 30 pounds this year and I believe it is because of my Ulcerative Colitis symptoms changing back in May 2014. I was not trying to lose weight but I lost 20 pounds in 7 weeks after having my symptoms change. Then I lost another 10 pounds in the months following. During the past month I have maintained my weight. I am obese and my doctors are happy about the weight loss. My thyroid doctor wants me to lose another 20 pounds. I keep trying to tell these doctors that I am losing weight but I am not trying to lose weight. I guess they don't care HOW I lose it, just so I lose it. I don't feel any better whatsoever after losing the weight. I don't feel healthier or happier. I am still wearing the same clothes, but the clothes are just baggy. : - 0
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I'm so sorry your doctors aren't taking your weight loss seriously. My doctors don't care how much it harms me to eat more and gain weight. Recently I was hospitaliised to gain weight and they made me eat and eat and eat. My intestine blocked and perforated, and the surgeon who saved me said it had happened because I'd been eating so much, my digestive system couldn't take it. But now the doctors are saying what they said before: "eat, eat, eat, gain weight" even though they know it nearly killed me. One also kept me on TPN (nutrition into the blood stream) when I clearly had an infection from the central line that was delivering it. Again, a surgeon stepped in and saved me. Some doctors are just obsessed with weight, whatever the cost and whatever dangers it may be hiding.

I also understand what you mean about not feeling any better even when your weight is technically "healthier". When I was a healthy weight I felt awful, and eating more always makes me sicker. But when I'm a "healthy" weight, doctors tell me I must be better. :confused2:
 
I

It takes Guts

emmaaaargh said:
This thread is such a great idea! :) Today I'm feeling kind of frustrated. I saw my GI yesterday and all seemed okay there. Platelets down, haemoglobin in range (finally), but my CRP was up. We agreed that if it was still up by the time of my next appointment, we'd move on to 100mg of azathioprine - which I'm fine with. Also, my vitamin D level is 20, so I'm now supposed to be taking 1200mg a day instead of 200mg.

But it's just that I'm kind of stalling when it comes to filling my prescription because we've had SUCH an argument with the pharmacy lately! I'm on 75mg azathioprine and for some reason my prescription fell out of sync - so I could order more 50mg, but not any more 25mg. I thought it'd been fixed - my dad rang the GP and they were really lovely, admitted they'd messed up, promised to fix it - but then we went to the pharmacy again and they only gave us 28 tablets of the 25mg. I'm supposed to have 100! I ran out the day before yesterday and haven't been able to get to the pharmacy yet, and I'm so tired of their not ordering the right medications when they're supposed to. With any luck they won't end up having to do all this for my 'new' vitamin D.

I've waffled on long enough - I'll leave it there for now. Just had to get it all out! :tongue:
Click to expand...
Sorry to hear the docs aren't as organised as you need. I've had that. It's di frustrating when what you are expecting is just basic normal stuff they should be doing every day! On a practical note when my dose was changed to 75mg j was told to take 50mg one day and 100 the following so that it would balance out. This advice was from my IBD nurse. If they can't sort your dosage out ask them if you can do this in the interim maybe?

Good luck and let me know if it helped! 😊
 
UnXmas

UnXmas

Feeling a little more optimistic about my weight now I think the excessive stoma output I've had the last few days is easing.

I had a codeine-free time yesterday, but took it as normal today, and I really do think taking it is better than not.

I have to go to the hospital for tests tomorrow. :( Really don't feel like it and I'm not sure it's even going to result in any useful information.
 
S

syzygy

I thought things were on the mend, but today ended up being day 8 of D since my last partial obstruction. I've managed to miss only one day of work, but it's really getting to me.
 
UnXmas

UnXmas

I had a good night's sleep, and feel better for it. Not sure I want to weigh myself in case I learn I'm not on track for tomorrow.
 
sammyb22

sammyb22

feeling frustrated...still waiting for call to start remicade!!!! why can't this move faster! If they hurt like this they would have set up for them!
 
UnXmas

UnXmas

UnXmas said:
I had a good night's sleep, and feel better for it. Not sure I want to weigh myself in case I learn I'm not on track for tomorrow.
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Well, it turns out I'm not exactly on track for tomorrow (not that surprised) but I've found I can make a great deal of difference to the scale depending on what I wear, eat and drink. I had considered resorting to "water-loading", except I'd probably drink Coke rather than water, to get some calories is (plus I don't like water), but even an ordinary drink makes a big difference when the doctors are dealing with 0.1kgs, where my losing 0.1kg means hospital, and gaining 0.1kg doesn't.
 
sammyb22

sammyb22

FML...should sum it up, been waiting for over a week for phone call from infusion center, and of course when I would go to the bathroom they CALL!!!
 
UnXmas

UnXmas

I made my weight-target, just. Now onto making next week's. :(

But sleeping well, doing ok managing codeine, have some happy things going on at home, so I know I want to stay out of hospital.
 
UnXmas

UnXmas

I don't think I got enough calories in yesterday, so I'm trying to do things better today. I slept well despite taking Modafinil, which I'm very pleased about. I'm trying hard to moderate taking codeine.
 
A

Ann Morgan

Location
Arizona
Dear UnXmas: Thanks for the advice. The only time I was ever given prednisone was in 2001 when I had Optic Neuritis in my left eye. I had the Solumedrol for three day and then prednisone for two weeks. Boy did I feel good ! Of course I had a ravenous appetite while on the prednisone, but I felt so good. I was not taking any medication at the time for my Ulcerative Colitis because I was not even diagnosed until 2006. When I took the prednisone my diarrhea went away and all my aches and pains went away too. I know that it causes weight gain and that it is not recommended for long term use ( because of the dangers and side effects ? ). And doctors don't want to give me hydrocodone either. I have taken hydrocodone before and I felt better taking that too. I am going to start PT on my shoulders probably next week. I cannot lift my arms up because of the osteo arthritis in my shoulders. I already walk hunched over and I have limited mobility in my neck. And this week my back started hurting ! I feel like I am on a roller coaster ride that never stops.: - 0 PS: This is a reply to the post you made on 10-25-2014 at 11:03am.
 
UnXmas

UnXmas

Ann Morgan said:
Dear UnXmas: Thanks for the advice. The only time I was ever given prednisone was in 2001 when I had Optic Neuritis in my left eye. I had the Solumedrol for three day and then prednisone for two weeks. Boy did I feel good ! Of course I had a ravenous appetite while on the prednisone, but I felt so good. I was not taking any medication at the time for my Ulcerative Colitis because I was not even diagnosed until 2006. When I took the prednisone my diarrhea went away and all my aches and pains went away too. I know that it causes weight gain and that it is not recommended for long term use ( because of the dangers and side effects ? ). And doctors don't want to give me hydrocodone either. I have taken hydrocodone before and I felt better taking that too. I am going to start PT on my shoulders probably next week. I cannot lift my arms up because of the osteo arthritis in my shoulders. I already walk hunched over and I have limited mobility in my neck. And this week my back started hurting ! I feel like I am on a roller coaster ride that never stops.: - 0 PS: This is a reply to the post you made on 10-25-2014 at 11:03am.
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My doctors put me on a course of prednisolone a few months back, and told me it would help me gain weight - which I need to do! But all the times I've been on predisone and prednisolone, they've never given me an appetite or helped me gain weight. If only we could all swap side effects! The bone loss was a big concern for me, as I already have osteoporosis.

But I did feel more well - I don't know how to describe it, just a combination of more physical energy and a boost in mood (though the boost did feel kind of fake) - the first time I took prednisone, and when I took prednisolone. But now I'm on prednisone again and my mood and energy don't seem to have changed that much. :confused2: Why are these things not predictable?
 
UnXmas

UnXmas

Today - worrying about the effects various meds are having on me (or not having on me); not overly worried about my weight as I think I've been eating alright, but it's a constant thought in my mind. I'll weigh myself later. Basically the doctors have driven me to weighing myself twice a day now. When I get officially weighed at the doctor's each week, it's sometimes in the morning, sometimes in the afternoon. What you've eaten, drunk and are wearing make a big difference when they will put you in hospital if you lose 0.1kg, but not if you gain 0.1kg. So I have to make sure I'm on target constantly; plus I've been kind of bored today and have been a lot lately, I hate being bored.
 
A

Ann Morgan

Location
Arizona
UnXmas said:
Today - worrying about the effects various meds are having on me (or not having on me); not overly worried about my weight as I think I've been eating alright, but it's a constant thought in my mind. I'll weigh myself later. Basically the doctors have driven me to weighing myself twice a day now. When I get officially weighed at the doctor's each week, it's sometimes in the morning, sometimes in the afternoon. What you've eaten, drunk and are wearing make a big difference when they will put you in hospital if you lose 0.1kg, but not if you gain 0.1kg. So I have to make sure I'm on target constantly; plus I've been kind of bored today and have been a lot lately, I hate being bored.
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I don't have a scale at home. The only time I get weighed is when I go to the doctor. Since I have many Specialist Doctors that I see, including my Primary Care Physician, this means I get weighed on quite a regular basis. I would go crazy having to weight myself twice a day! I get bloated a lot, probably part of my Ulcerative Colitis. I also believe I have Bile Malabsorption because I have all of the symptoms......and I have had them for years. I take the Questran and it helps with those specific symptoms.

Keep in touch and take care of yourself.:rosette1:
 
S

syzygy

Feeling pretty discouraged. I've never really had "flares" before, but this one is going on for 2 weeks. (In the past I've just had obstructive episodes.). I'd gotten up to one light solid meal per day on Saturday and stopped having D, but I think I pushed things too far tonight by adding in a second meal of rice, beans, and spinach. I thin the catch was that it was prepared spicier than usual by the burrito place. So frustrating. Remicade infusion #2 tomorrow.
 
A

Ann Morgan

Location
Arizona
syzygy:
If I am having a lot of diarrhea I usually eat what is called the BRAT diet. It is bananas, rice, applesauce and toast. Just plain white rice ( like Minute Rice ). Plain applesauce, not the flavored kind ( like cinnamon or whatever ). And just plain toast with nothing on it. The white rice and the banana are the two things that work best for me. I know everyone is different, but this is what I do.

Hope you feel better after the Remicade. :)
 
A

Ann Morgan

Location
Arizona
Today I am feeling confused. Okay, I was diagnosed with Ulcerative Colitis in 2006

but I have been having diarrhea since 1997. Anyway, I looked up on the Internet

the difference between Crohn's and Ulcerative Colitis and according to those facts

I DO NOT have Crohn's. But I recently had a CT Scan of my kidneys and abdomen

because I have a 1cm cyst on/in my right kidney. ( I had a 1cm cyst removed

from my left kidney in 2007, they did a major operation and not the laparascopic

kind. Why they did surgery on a 1cm is ridiculous from what I read on the Internet

about not having surgery unless a cyst is 3m or over. I had no information about

this cyst at the time and I just did what the doctors suggested ).

So I read the Final Report of my CT Scan of my kidneys/abdomen today

and here is what one note said : " The approximate 1 cm right renal cyst

appears somewhat more thick-walled on the current examination. No renal hilar

or para-aortic lymphadenopathy identified. Recommend MRI with contrast

material for further characterization of the right renal cyst.

Another note: Wall thickening and inflammatory change involving

the terminal ileum suggesting terminal ileitis.

Of course, this all freaked me out because I just had a colonoscopy

and it was normal, but I have had some changes in my symptoms since

May of this year. I also have B12 deficiency among many

other things. Also, recently my Primary Care Physician ordered

a blood draw for me. The current blood test showed

that my alkaline levels are high. I am getting

a follow-up blood draw next week. I looked all this stuff up on the

Internet and I am confused. I looked up Terminal Ileum so that I

could see where it was. I looked up terminal ileitis. I looked up

alkaline levels. I looked up Crohn's and Ulcerative Colitis.

I see my Urologist next Monday. He knows I don't want

renal cyst surgery unless it is absolutely necessary. I am

sort of starting to see how all of my health issues are all

connected now. One health issue leads to another.

I guess I should stay off of the Internet for a while because

I get confused and then I get anxiety. Thanks for listening.

Have a nice weekend.
 
Gram214

Gram214

Well here I am...4 A.M ! I was a bad girl and started taking prednisone 20 mg. I intend to do 20 for a week..then start a taper. Been there so many times it's not even funny . I only hope 20 cuts it . Now my GP will frown upon this but he hasn't walked or I should say tried to in my shoes for the last month or 2. My GI doc. is more llenient about pred. The pain in my feet was getting beyond bearable as well as every other body part also . My gut acts up only 1 to 2 times a day but that may be from the duragesic patches and hydrocodone I take . I understand they slow down bowel activity . All these pain drugs and still in so much agony ? WTH ??
My pain level has gone down considerably already from one dose of pred.! I know how bad the evil drug is for me but it's dirt cheap and it works. I am due for my Remicade Monday morning but I question if it's even helping that much anymore . I wish there was a devise that we could look at our own colons...LOL last colonoscopy that I had mine looked like raw hamburger. But that was in January 2013 .
Oh and Ann ...I know just what you mean about getting more confused if you read too much. Take it one day at a time and please don't let your illness take over your life. There will be bad days and there will be good days. I am here to swear to that !
Feel well everybody and be kind to yourselves ! God Bless !
 
UnXmas

UnXmas

Ann Morgan - what was it that you found that told you you don't have Crohn's? Did you think you had Crohn's before? Sorry, I'm confused too - I think all those test results and Internet articles would confuse anyone. ;)
 
UnXmas

UnXmas

I'm so full that I'm worrying I have another blockage building. :frown: And it is so hard to eat and I have to gain weight to stay out of hospital. So I'll either end up in hospital with a blockage from eating so much (again) or I'll end up in hospital because my weight's not going up enough (again). Or maybe both those things will happen again. :runaway:
 
scottsma

scottsma

Well-known member
Location
Tynemouth,
You're definitely between a rock and a hard place !!!

I always read your posts hoping for some good news from you.

I wish you the very best,chin up !
 
tuckersbaker

tuckersbaker

I think this is an amazing idea, and exactly what I have been looking for. I live in a teeny tiny town and am the only person with Crohns. So I feel alone today. I am in a flare today, not one of the worst but bad. I feel frustrated and a little angry. You would think after so long I would be able to handle this better. I have been crying out of frustration, and a little from pain, since Saturday. I am doing everything that I should, but still nothing works. I take Humira every two weeks, mylan, and budesonide and all I feel they do is make me sicker than before. I just want to scream. I don't know what is worse the pain, the nausea, or the heartburn.
 
UnXmas

UnXmas

You're not alone, tuckersbaker. :ghug:

My weight has finally gone up!!! And I mean it's been up consistently for a few days, not just a fluctuation, not from heavier clothes or from being full of food or drink. All the cheese and butter is working.

(I still feel I should not be having to do it like this though. I should not be having to eat tablespoons of butter, before I go to sleep so I don't have to feel how bad my stomach feels. I should not be having to stay up when I'm so tired and just want to sleep, but can't because I need to wait for anti-nausea medication to kick in so I can get more food down that day. And my doctors should not be making me gain weight by threatening me with hospitalisation if I don't gain. They should be fixing my digestive system so that I can eat and gain weight without it destroying my health. And if they can't fix it, they should leave me alone. You'd think after nearly killing me by making me eat more than my digestive system can take once, they'd have learnt something, but apparently not. Rant over. The only reason I can gain weight at all is because I have a stoma now. I don't know how I would have survived my last hospital admission without it. I don't even want to think about it. At least my surgeon knew how to help me, even if my other doctors don't.)
 
sammyb22

sammyb22

feeling pretty frustrated as usual. go for second remicade infusion Friday, and I think I am having some side effect issues, so fill in doc(mine on vaca) tells me try it again and see if side effects continue...and was happy I put on 2 lbs, the last time at doc's it was 75 DEG and I was in shorts!!! You really can't fix stupid!!!
 
S

syzygy

It's now three weeks straight of feeling crummy, which all started 4 days after starting Remicade. Bloodwork, stool tests, and CT results look pretty normal. I had my first formed BM yesterday, but then back to D (hopefully just due to the CT contrast agent working its way through me). I ate a piece of toast with jam and a little bit of water 3 hours ago and am feeling as full as after Thanksgiving dinner. I am just so frustrated.
 
UnXmas

UnXmas

UnXmas said:
My weight has finally gone up!!! And I mean it's been up consistently for a few days, not just a fluctuation, not from heavier clothes or from being full of food or drink. All the cheese and butter is working.
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Last night I had awful diarrhoea - two stoma bags of watery output in about five minutes. So then I was panicking (still half-asleep) thinking that all that lost water would make my weight go down, so I drank an Ensure at like three in the morning, and felt so ill after. And today I weighed myself and it has gone down. Is it just lost water? When my weight had been higher the past few days, was that not real weight, was it just that I weighed more because I had a lot backed up in my digestive system that has now come out??? I am so so full this morning. I've been eating a lot last thing at night (or, in the early hours of the morning last night!), with the idea that I'll go straight to sleep and not have to feel how bad my stomach feels. But all it's doing is making me wake up in the morning so full I can't face eating any breakfast - I do, but I'm forcing it down, and it's not enough. Don't know what to do now. :( :frown: :cry: :cry:
 
UnXmas

UnXmas

sammyb22 said:
feeling pretty frustrated as usual. go for second remicade infusion Friday, and I think I am having some side effect issues, so fill in doc(mine on vaca) tells me try it again and see if side effects continue...and was happy I put on 2 lbs, the last time at doc's it was 75 DEG and I was in shorts!!! You really can't fix stupid!!!
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I wish my doctors were stupid enough that I could feel confident that they wouldn't notice if I wore heavy clothing when my weight went up. Sorry you're struggling with weight and side effects also - seem to be common themes around here!
 
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