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ronroush7 said:
Have you had surgery for the hernia? Have you discussed with your doctor about what the Flagyl is doing to you? He might need to switch medicines on you.
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No not yet, my Dr dosent want to mess with the hernia untill he does the ileostomy reversal. An yes I told him about the flagyl but he informed me it's the only meds that take away colon infections an it can't be changed but that if it don't work he might have to do liquid injection shots or stay in the hospital for drip iv meds for a few days. But that's all I know. I need to know why I'm having so much trouble with my leg from the gracilis muscle being cut an moved.
 
Megeraldo3 said:
No not yet, my Dr dosent want to mess with the hernia untill he does the ileostomy reversal. An yes I told him about the flagyl but he informed me it's the only meds that take away colon infections an it can't be changed but that if it don't work he might have to do liquid injection shots or stay in the hospital for drip iv meds for a few days. But that's all I know. I need to know why I'm having so much trouble with my leg from the gracilis muscle being cut an moved.
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I hope you get better soon.
 
Robertp said:
Really depressed and sad, the though that I would be dead by now without medicines and that I have my whole life with this shit is just unbearable. I'm 23 years old almost all my peers get to enjoy life and not have to buy medical insurance among other things.
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You so young an I feel for u, these problems make us all depressed I know i am depressed also an feel like a prisoner in my own body an in my own house. I will keep u in my thoughts an prayers an hope that u will find comfort in knowing ur not alone. This support group has already made a big difference for me an have only been in it a couple days now an now I don't feel so alone. God bless u
 
Been a while since dropping into the forum here. A bit scatterbrained at the moment with many changes and progress happening at once. But today? Today I'm just out of energy and out of my reserves. Headache, guts being squirrely, joints hurt, no appetite, just a generally blahh and "crohnsie" kind of day.

Been pushing both physically and mentally. Hoping to remove methotrexate from my med mix this next week, I'm done with it and called in last week to let the office know I'm no longer compliant and need an alternative option to try. Second time I've ever kicked a drug without prior authorization, but I can't tolerate side effects and none of the options attempted to treat them have helped enough. Anxious, guess I'm anxious about it all but doc. wont likely be surprised since I've been asking to stop taking it for 6 months.

Working on a 1500 word essay for a contest. The $3,000 prize is highly motivating, and I'm getting to write about Crohn's while addressing the prompt. Not the first time, but certainly the first time I'm looking to publish my experience with Crohn's. Hopefully I'm doing it justice. I have 3 weeks left to take my current draft to publishing quality. A fair chunk of it has been writing/ thought of while in the bathroom. Lol!
 
ronroush7 said:
Just Tylenol. I am going to call my gi Monday.
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:( Good idea.

In the mean time, if it is muscle pain and continues persisting over the weekend Arnica cream may really help if you don't already use it. I find it reduces joint, skin and muscle pain as well as inflammation better than Tylenol. Bit pricey as a lotion/ cream, but a little goes a long way and can usually be found in any drugstore. Take care.
 
Right now......very bloated and rumbling in my digestive tract. I am suffering from stress because I am going to have a fine needle aspiration of my thyroid in November and I am terrified of this......having a needle jabbed into my neck while I am awake ! I have nodules on my thyroid that are growing. I am afraid they may do a thyroidectomy too. Thanks for listening.
 
So, who can really figure out what causes my fatigue ! Is it........my Ulcerative Colitis.....my thyroid troubles.....my problems with sleeping......my depression.....

Yikes, I get TIRED just trying to figure it all out !
 
Ann Morgan said:
So, who can really figure out what causes my fatigue ! Is it........my Ulcerative Colitis.....my thyroid troubles.....my problems with sleeping......my depression.....

Yikes, I get TIRED just trying to figure it all out !
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Have you had your blood levels tested?
 
Megeraldo3 said:
No not yet, my Dr dosent want to mess with the hernia untill he does the ileostomy reversal. An yes I told him about the flagyl but he informed me it's the only meds that take away colon infections an it can't be changed but that if it don't work he might have to do liquid injection shots or stay in the hospital for drip iv meds for a few days. But that's all I know. I need to know why I'm having so much trouble with my leg from the gracilis muscle being cut an moved.
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Flagyl is not the only medication to treat intestinal infections. My Gastroenterologist prescribed Vancomycin for my C-diff intestinal infection last year. I took the prescription pills for 2 weeks. The prescription WAS expensive and required a Pre-Authorization from my Health Insurance Company, they paid 66% of the cost and I paid 34%. I believe that Vancomycin CAN be given to a patient via an IV. Flagly did NOT work for me. I hope you feel healthier soon. : - )
 
Ron: My Primary Care Physician will draw blood in September, just my once a year "Comprehensive Metabolic Panel". I had blood tests recently in ER and I was not informed of any problems. But I have thyroid problems and that can affect my energy levels. My Endocrinologist does a blood draw every 6 months ro check my TSH. : - )
 
Ann Morgan said:
Ron: My Primary Care Physician will draw blood in September, just my once a year "Comprehensive Metabolic Panel". I had blood tests recently in ER and I was not informed of any problems. But I have thyroid problems and that can affect my energy levels. My Endocrinologist does a blood draw every 6 months ro check my TSH. : - )
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I thought maybe you might need iron or b12. Off of subject but I have hypothyroidism.
 
Right now, weird. I've been having my albumin infusions and now 100mg of iron (I am parentally iron intolerant) - I hope I won't get my usual iron reactions. My stomach has that constant empty feeling for the last 4 days - I literally cannot eat enough but my stomach wants MORE.
Thank god for my port (a welcome hangover from my chemo) - it just takes so much stress out of having IV infusions
 
I hope you get feeling better real soon!
Besides my butt aching I get some back pains, but not too severe.
My Mom has tingling in her legs and the Dr acts like it isn't a big deal.
I got My Dad once a hand massager or hand vibrator and my Mom uses that too now and then on her legs, she goes on that they don't really hurt but just a tingling sensation and it sometimes drives her nuts. Hope you get feeling better!
 
I sure know how that is! I know I'm not supposed to strain, but OTHERS just do not understand the problem!
Wishing you the very best!
 
Wicked heartburn from my iron infusions, feel like the lining of my stomach is being peeled off with acid :(
Last time I had this, it was actually what was happening due to chemotherapy
 
having one of those Mondays where I feel like I need to get a PA to organize my medical appointments and followups - like a full time PA. this morning was crap, i missed two appointments as my intestines are unhappy and then had to make a fleet of phonecalls for new appointments...as well as deal with supreme childish behaviour by two of my colleagues :/
 
kikig said:
having one of those Mondays where I feel like I need to get a PA to organize my medical appointments and followups - like a full time PA. this morning was crap, i missed two appointments as my intestines are unhappy and then had to make a fleet of phonecalls for new appointments...as well as deal with supreme childish behaviour by two of my colleagues :/
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I am sorry
 
Hello I'm new to the group. I was diagnosed with Crohns in January of this year. I was in the hospital last year for about a week in October. After many test and two doctors I got the help I needed. The morning time is the worst. After a bowel movement I don't want to do anything but I'm usually at work so I just suffer through it. I work around fifty hours a week and I'm a maintenance man. I have debated on if I need to do something different because the last few months have been a struggle. Also on the weekends my stomach stays messed up. I think it because on on a schedule during the week and on the weekend everything changes. Does anyone else have problems with their stomach when their schedule changes? I had many bath room trips yesterday today has been better but after supper I had some stomach aches and gas.
 
Please help me I am not feeling well I am feeling sick to my stomach nausea and im vomiting I have some stomach pain and im feeling very weak and also very embarrassing my stomach just let go making me shit my pant please help
 
Hey Ron ^ How are you doing today apart from that?

Feeling okay today. Low on energy with pressure in the large intestine but overall feeling motivated and staying on a positive note.
remission was confirmed by blood/stool tests and recent colonoscopy. :)
 
I just got up but yesterday and the night before that I was going to the bathroom a lot. Yesterday, I was having pain in the abdomen. Earlier, I had some pain in my leg.
 
Not feeling too bad this morning , switched from humira to remicade two days ago and discharged from the hospital yesterday , bm's still a little frequent but hopefully its will get better soon , feeling a little weak as well but thats probable from six days in hospital ,
hey Ron sorry to hear your not so well .
 
Tony H said:
Not feeling too bad this morning , switched from humira to remicade two days ago and discharged from the hospital yesterday , bm's still a little frequent but hopefully its will get better soon , feeling a little weak as well but thats probable from six days in hospital ,
hey Ron sorry to hear your not so well .
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Thanks , Tony. Better today.
 
Feeling a bit better today ,less urgency so far , but it still :stinks: a lot :shifty:
 
not as good as yesterday today , sorry to hear you are starting to flare up as well Ron , just counting down the days for the second infusion of remicade , One week to go ,
Sometimes the only thing that keeps me sane is this website ,
day or night there's always someone around ,
and hearing some of the stories makes me realise how lucky I am comparatively speaking , I really dont know how the parents of the kids with this horrible disease cope , it s hard enough as an adult to cope but to watch your child suffer and still have a positive outlook on life , that takes strength .
 
Tony H said:
not as good as yesterday today , sorry to hear you are starting to flare up as well Ron , just counting down the days for the second infusion of remicade , One week to go ,
Sometimes the only thing that keeps me sane is this website ,
day or night there's always someone around ,
and hearing some of the stories makes me realise how lucky I am comparatively speaking , I really dont know how the parents of the kids with this horrible disease cope , it s hard enough as an adult to cope but to watch your child suffer and still have a positive outlook on life , that takes strength .
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Tony, I hope you feel better soon
 
not too bad today , a lot of bms in the early morning but a lot better in the day so far , its been decided im to have surgery , so im awaiting the colorectal surgeon to give me more info and the timing , but my gi is pushing for me to have it on this admission in case i deteriorate more , so hopefully I will be sorted by the weekend and start a hopefully great new chapter of my life , free from short sprints and everything that entails ,
so overall im not too bad today .
 
Today I feel defeated. Last colonoscopy I had said I was in remission but I'm having a hard time accepting that. It's hard to believe those words when for months all my blood came back normal yet I indeed had Crohn's. Can I really trust those words when for years I was told there is nothing wrong with you or your just seeking attention.

I haven't slept all night from anxiety.

Yesterday my hours were cut again at work(2 times this month) and now I'm back on call. Unpredictable and my sick time will not be paid for. I had a great thing going at work. I made connections and I was part time. Something I was advised to take.

Now I'm back at square one

Hope someone is having better days
 
Tony H said:
not too bad today , a lot of bms in the early morning but a lot better in the day so far , its been decided im to have surgery , so im awaiting the colorectal surgeon to give me more info and the timing , but my gi is pushing for me to have it on this admission in case i deteriorate more , so hopefully I will be sorted by the weekend and start a hopefully great new chapter of my life , free from short sprints and everything that entails ,
so overall im not too bad today .
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What do they want you to have?
 
MizzSarah said:
Today I feel defeated. Last colonoscopy I had said I was in remission but I'm having a hard time accepting that. It's hard to believe those words when for months all my blood came back normal yet I indeed had Crohn's. Can I really trust those words when for years I was told there is nothing wrong with you or your just seeking attention.

I haven't slept all night from anxiety.

Yesterday my hours were cut again at work(2 times this month) and now I'm back on call. Unpredictable and my sick time will not be paid for. I had a great thing going at work. I made connections and I was part time. Something I was advised to take.

Now I'm back at square one

Hope someone is having better days
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Sarah, last year, they had to do an enterography on me twice. The first time they said I was in remission. I was still having symptoms so they repeated it and found out I had active disease. If I am repeating myself, forgive me. I hope you get answers soon. 😀😀
 
There's been more up days then down days, but today's one of those mixed days. Anxious and edgy for no reason and energy is dragging terribly, I'm ready for a nap. Could be an infection, doc's been concerned about white blood cell count but I think this drag is more from pushing my activity level. Slight uptick in pain/ discomfort and ongoing feeling of instability from med. adjustments but the gut itself has been holding to a generally normal pattern which has been feeling like a true luxury. Been feeling really happy about current activity level, and having the ability to enjoy a bit of the world again without needing constant stops for the bathroom or waves of pain.
 
Had fecal incontinence last night. Didn't get up for good until one thirty. Have been to the bathroom four times. Not feeling well.
 
I was fine yesterday and the day before, but today just went downhill. The change in weather has me beaten down, and I just can't eat anything without feeling sick. I took tomorrow off, so luckily I'll stay in bed...
 
Aydmen said:
I was fine yesterday and the day before, but today just went downhill. The change in weather has me beaten down, and I just can't eat anything without feeling sick. I took tomorrow off, so luckily I'll stay in bed...
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Hope you feel better
 
I'm exhausted. Work week starts up again today and I haven't slept much the entire weekend. Maybe 4 hours over the 2 days. I haven't been able to take my Meds as my entire household is sick. Thanks to my immune system I am sick again too. I'm always sick...I can't remember a week in months that I haven't been ill.
 
MizzSarah said:
I'm exhausted. Work week starts up again today and I haven't slept much the entire weekend. Maybe 4 hours over the 2 days. I haven't been able to take my Meds as my entire household is sick. Thanks to my immune system I am sick again too. I'm always sick...I can't remember a week in months that I haven't been ill.
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I am so sorry, Sarah. Hope for a quick diagnosis and recovery.[emoji4]
 
Sorry for being so quiet having a really tough time , so I just want to update. I went for a scope last week turns out my disease are very active so that they could not get the scope through no matter what they did so I have to go for another scope next month again with smaller equipment this time
 
Thank you ron im still not in remission and still on pred and yet it gets worse everyday. Im hopeless now im so depressed with everything. Walking in pain and feeling sick every day is no way to live. Ron I see you went for surgery whats going on are you okay?
 
At my wits end. I'm tired and my bones feel about ready to snap like a twig. I have yet another chest infection(I have at least 4 in a month) I took 2 days off of work end of last week and I had to take another day off today. I dread leaving my bedroom as I'll get questions yet again about why I'm home. My mom just had hip surgery and is already moving around like a pro and I'm--- a big failure.
 
MizzSarah said:
At my wits end. I'm tired and my bones feel about ready to snap like a twig. I have yet another chest infection(I have at least 4 in a month) I took 2 days off of work end of last week and I had to take another day off today. I dread leaving my bedroom as I'll get questions yet again about why I'm home. My mom just had hip surgery and is already moving around like a pro and I'm--- a big failure.
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Sarah, you are not a failure.
 
Great news about your boyfriend! I used to smoke and think that it helped my stomach situation. I finally quit 2 years ago and while I still deal with a lot, I'm more equipped to deal with it now. I'm less tired at least!
 
Catlover96 said:
Not much. He wants to see the results of the small bowel follow through on Wednesday before he makes anymore treatment decisions. I am on Budesonide.
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I am on budesonide to it does help with the inflammation my crohns was acting up alot and I had to take it 3 times a day but it went down so I went back to one but lately it's be flaring up I have been nausea bloated and o get hot and cold I'm see my doctor Tuesday hopefully it will clear up soon
 
American Wolf said:
I am on budesonide to it does help with the inflammation my crohns was acting up alot and I had to take it 3 times a day but it went down so I went back to one but lately it's be flaring up I have been nausea bloated and o get hot and cold I'm see my doctor Tuesday hopefully it will clear up soon
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Maybe he needs to increase it again for a little while.
 
I've been sleeping very poorly lately, leaving me totally dead during the day, the main reason why I havn't been around here much lately. I toss and turn all night like a washing machine, not able to find a comfortable position while my legs will not hold still. Otherwise, I am eating and not flaring.
 
I bought a fresh bottle of melatonen to replace the old one that was expired for the past 6 months. I slept well last night, perhaps the old ones lost their strength.
 
I get to have yet another colonoscopy next week. My new gi doc thinks that my old gi doc might have missed something. I am not responding to humira i have been on it since may of this year and i am on as high of a shot regimen as i can be. Looking like i will be switching to entyvio.
 
Catlover96 said:
I get to have yet another colonoscopy next week. My new gi doc thinks that my old gi doc might have missed something. I am not responding to humira i have been on it since may of this year and i am on as high of a shot regimen as i can be. Looking like i will be switching to entyvio.
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Hope you are feeling better soon.
 
It's been awhile since I wrote my feelings down here but here I go. Things have been pretty good besides the fact I have little to no immunity left. My infections are 3x as bad as ever and take forever to pull out of. Over the summer I was able to have no infections from July through September. That was such a huge accomplishment for me since I was literally going weekly to my doctors for antibiotics. Now that I have returned to work(work in schools) I am now fighting my latest infection. Pneumonia again I'm sure. On top of that I was just recently told by my rheumatologist that I have a narrowing spine---result of countless years of joint issues undiagnosed until later with CD. I had to give my 2 weeks notice to my second job as I am physically unable to meet the demands of that. I basically was scolded by my rheumatologist for even daring to try to msintsin two physically demanding jobs in my current condition. I just---really want to move out and make something out if my life. I want a house... I want a life at 24 years old. I'm currently in bed now after a stressful working day in so much pain. (This is his I am every day after work) I love my job so I'm going to keep doing it for as long as god will allow it. I hope that I'll besble to keep doing it for many years but at this point I just pray for another day. I'm stressed out because I worry my condition is not being taken seriously. I hate getting mail because each day I keep getting some form of reject letter. My confidence is shot. My anxiety is at the highest high and I just kind of wish--sadly- i could be just left alone in a safe bubble of protection. No one could hurt me there
 

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