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My incontinence has returned. I am due my trird infusion of Entyvio tomorrow if I can get a ride.
I really want to go to Florida to see my dad.
 
Hey everybody I've had a bug I couldn't shake the last couple weeks today is the first day I feel halfway decent just in time to spend the day getting cleaned out for my scope and scans tomorrow.
 
Greetings All. New to this site...been away from any form of forum well, out of feeling defeated.

10 years since I was diagnosed. Tried every med on the block...currently on Stelara. But the endless bathroom stays, horrible fatigue, high levels of pain, and battles with doctors have gotten to me. Hard getting out of bad, the house, and staying awake at work.

Expecting our first kid in a couple months, and not sure how that's going to go. Will do my best, of course.

Looking at me...you'd think the opposite. I work out A LOT (its my only respite), and try to be happy go lucky. I've got a good marriage, and live in a beautiful place.

But this disease is a terrible test of one's mental capacity.
 
Greetings All. New to this site...been away from any form of forum well, out of feeling defeated.

10 years since I was diagnosed. Tried every med on the block...currently on Stelara. But the endless bathroom stays, horrible fatigue, high levels of pain, and battles with doctors have gotten to me. Hard getting out of bad, the house, and staying awake at work.

Expecting our first kid in a couple months, and not sure how that's going to go. Will do my best, of course.

Looking at me...you'd think the opposite. I work out A LOT (its my only respite), and try to be happy go lucky. I've got a good marriage, and live in a beautiful place.

But this disease is a terrible test of one's mental capacity.
Welcome. I am sorry you are having a rough time. You have found a good place to come.
 
Hey there fellow sufferers!

For the fatigue that is common in intestinal disorders I would recommend Modafinil or Armodafinil 100-200 mg in the morning.
The medication is none addictive and with few side effects.
It is used by airline pilots, shift workers, the US army, patients with Chronic Fatigue Syndrome and other conditions/disease.
You will feel less fatigue and increased motivation. Talk with your doctor.

I was house bond before because of debilitating fatigue.
It gave me roughly 50% of my previous energy back. And I am able to engage in life again.
I had to prescribe it to myself and use it for a month, and then managed to convince a physician to prescribe it for me.
Today I cleaned my entire bedroom and felt good while doing it. After that I took a swim in the pool and finally studied some biology in class.
I do highly recommend to try it.

God bless!
 
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It is very important to take initiative over your own disease.
I personally have very low confidence in doctors and often many patients with chronic conditions have more knowledge about their own disease, individual symptoms and treatment history.
I find far too many physicians unsympathetic, uninterested, overworked and sometimes stuck in their own heads.
Me -"Doc I feel like death, I have diarrhea every morning, out of breath and loosing hair" Doc -"well your blood work looks fine, no idea what is wrong with you"
With a few of them I named some medications and had to spell it out for them while they looked it up on their computer. The last one did not even know what modafinil was despite it being so common.

Just a little rant before bed.
Take care of you all, don't loose hope and god bless. One day at a time.
 
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cmack

Moderator
Staff member
Prayers from me too Jane. I'm happy to hear from you buddy. :) I was worried about you.
 

cmack

Moderator
Staff member
Take care Ron and try not to stress. I know, it is far easier said than done. I hope things work out.
 
I was at the hospital from 6:20am till just before 4:30pm yesterday.I had a scope scheduled for 7:30am they did a bunch of blood tests before then after the scope I had to drink contrast and get scans done.I get the results Thursday when I see my GI.
 
I was at the hospital from 6:20am till just before 4:30pm yesterday.I had a scope scheduled for 7:30am they did a bunch of blood tests before then after the scope I had to drink contrast and get scans done.I get the results Thursday when I see my GI.
Hope the best for you
 
I was supposed to have my next infusion of Entyvio this past Friday but because of financial concerns and not being able to find a service to give me a free ride, i delayed it. Cant wait to get my next infusion.
 
Ron try to get there as soon as possible it's important to try to say mostly on target. Hitch a ride with neighbor maybe?
 
I have had a couple of instances of incontinence lately . One was the day before i was to have my next infusion and the other one was on Sunday. I feel like I am going backwards. I had a bad time with my stomach last night. I felt a little dizzy shortly after waking up.
 
I have had a couple of instances of incontinence lately . One was the day before i was to have my next infusion and the other one was on Sunday. I feel like I am going backwards. I had a bad time with my stomach last night. I felt a little dizzy shortly after waking up.
I'm sorry Ron my prayers are with you. I've felt like that lately too. But my eating has been off too.
 

cmack

Moderator
Staff member
A little bit of blood is one thing. I have had that while in remission but usually only if I'm having hard to pass BM's. In my case it was lack of diligence on my part and I was dehydrated. I recovered on my own. I hope you can get in for your infusion soon and mention the suspected blood to the doc. Does your church help elders with rides? I would drive you myself if I were closer buddy.
 
I will never eat a tomato again. Forgive me for my vents.
Awwe...I'm sorry Ron. I take it the nasty tomato didn't agree with you ? But maybe it's a lot because you haven't exactly been well as of late. That and missing your infusion. Hope you feel better. ☹🙏🏻
 
Just an update Had my scope and went to my GI thursday he said the inflammation was substantially down from my prior scope a few months ago but there's more of a narrowing that their concerned about so I had an ultrasound on Friday and the narrowing seems to be scar tissue related.I've been prone to blockages a lot over the past few years.I'm at an even number of surgeries so I'm not thrilled about that.
 
Ron, nightshades were always an issue for me. I've been able to eat tomato's now though with the new Vedolizumab. Hugs.
 
Sick of being sick. I've missed 3 weeks of work already, not sure if I'm ready to go back tomorrow. Guts don't feel right, abscess (fistula?) right next to my bung hole causing a lot of pain, in general feeling like shit. If it weren't for the wife and kids I'd have offed myself already.
 
Sick of being sick. I've missed 3 weeks of work already, not sure if I'm ready to go back tomorrow. Guts don't feel right, abscess (fistula?) right next to my bung hole causing a lot of pain, in general feeling like shit. If it weren't for the wife and kids I'd have offed myself already.
Everyone here cares about you.
 
In so much pain lately but hey it's nice to be in pain for a reason. For some reason I've been building a trail and terracing a hillside and planting things, so much heavy work. To be in pain for a reason is mentally helping me.
 
Hi Ron...how are you really doing ? I've been out of touch lately. Very frustrated with everything .
Can't get my Remicade now that I've exhausted all means of getting funding. It's now 9 weeks and counting. Hoping I can stay well enough to just tell them what they can do with their poison. 😡
 
Hi Ron...how are you really doing ? I've been out of touch lately. Very frustrated with everything .
Can't get my Remicade now that I've exhausted all means of getting funding. It's now 9 weeks and counting. Hoping I can stay well enough to just tell them what they can do with their poison. [emoji35]
Sometimes in the bathroom a lot. A lot of bloating sometimes. I haven't found anything that works on that yet. Sometimes, I wake up at four or five in the morning.
 
Ron...I'm exactly the same. I can't venture far from the bathroom..unless I don't eat. Sometimes I am up too in the wee hours. So if I have these " episodes regularly..am bloated ....my joints and especially my feet are so painful I can barely walk sometimes. .is the Remicade helping anyway ...really ? Maybe this will be a good test to find out one way or another.
I've given up on trying for help for the year...until January at least. Then some assistance places could possibly give grants again. Or I might have a better Medicare plan by then. One day at a time ....
Another funny story...I was really happy a couple weeks ago when my Remi nurse called and told me my Dr. Was calling in script for an oral drug to help me until or if I get my Remicade again. My happiness was rather short lived. The pharmacy called and told me my ins. Wouldn't cover the drug he called in. It was called Ucerix I think. It costs 2000.00 for a 30 day supply. Oh good Lord.
Sorry youre having some issues my friend. Hope you feel better soon.
 
Oh Ron....isn't it ridiculous that these drugs cost what they do ? And to think ....some peoples insurance will pay for it ! It doesn't seem right that you're not doing better on your IV treatment ? I'm sure it's as expensive as Remicade or maybe more so ?
Oh My......how I wish we both could just find something cheap and good for our problems !
Hope you enjoy the rest of your weekend with your family . Take care...
 
I was on Remicade from 2005 to 2007.... I was working then and my insurance was good. Then I got a bad allergic reaction and went off of it. I just was on Asacol ..prednisone on and off.. and Imuran . That was kind of ok till New Year's Eve 2012. Ended up in hospital for a month. Came close to losing my colon that time...then my Dr decided to try Remicade again. This time though I am pre medicated before the infusions.
But what can I do...money talks. Without it i have no voice....
If I can just hold off until January ...but it seems so far away.
I'm so tired...it was a bad day. Good night .
 
Everyone here cares about you.
Hello everyone.
I am new here.
I am strugling and feel overwhelmed.
Everyday, I keep fighting to keep it together for my child.
Her father is already deceased and all she has, is me, her ill mother.
Looking forward to a better day...
 
Hello everyone.
I am new here.
I am strugling and feel overwhelmed.
Everyday, I keep fighting to keep it together for my child.
Her father is already deceased and all she has, is me, her ill mother.
Looking forward to a better day...
Welcome. What medication does your doctor have you on? Maybe your doctor hasn't found the right mixture of medicine yet.
 

cmack

Moderator
Staff member
Hello, thank you for replying,
I am on day 6 of entocort 6 mg and mezavant 2.4 gm
Hi,

Welcome to our forum. I'm sorry to hear about all the troubles you have had to face. You can vent or talk to me about things, I will be a friend.


Regards,

Chris
 
Had horrible pain in the night, followed with diharea.
Cant take the pain anymore:
Called back dr's secratary this morning, she said she would speak with doc.
 
Caro01 ..maybe you should go to the ER if you're in that much pain. It could be something serious ! God Bless you ..XX
 

cmack

Moderator
Staff member
Do you have anyone else who could look after your child for a short while? If you do, I think you should get checked by a doctor. Pain is always a bad thing, you deserve some help.
 
Hello everyone.
Thank you so much for the support.
The dr ajusted my meds.
I am better.
The entocort helps a lot.
I can now eat food and the inflammation is a lot less.
XXX
😀😀😀
 
Oh Good ! I am so glad to hear you're feeling better ! That's how this disease works. One time you feel good..next you feel like you're never going to feel well again.
Always try to stay positive and know there's so many of us that know exactly how you feel.
Take care ! XX
 

cmack

Moderator
Staff member
Feel free to vent, we don't judge people here. It's okay to be angry sometimes. ;) I wish you better health.
 
Hello,
I was doing so well for a few months on entocort, bustopan and dexilant
and then the night D showed again.
It had so much pressure and so painful.
Woke up with a
Inguinal Hernia!
Now, I am afraid.
What will happen next time that I have D?
[emoji45]
 
Hello,
I was doing so well for a few months on entocort, bustopan and dexilant
and then the night D showed again.
It had so much pressure and so painful.
Woke up with a
Inguinal Hernia!
Now, I am afraid.
What will happen next time that I have D?
[emoji45]
Have you contacted your doctor?
 
Have you contacted your doctor?


Hello Ronroush, thank you for writting, you are so kind.
Are you feeling better?
My GI doctor’s clinic reopens
in one week. I had a friend GP look at it, and he confirmed the hernia. I have to be careful in the mean time.
Happy Holidays to all!!
 
Hello Ronroush, thank you for writting, you are so kind.
Are you feeling better?
My GI doctor’s clinic reopens
in one week. I had a friend GP look at it, and he confirmed the hernia. I have to be careful in the mean time.
Happy Holidays to all!!
Hi,Carol. I am better. I only have ocassional pain in my leg. I hope you feel better soon.
 
So, I had to call out of work today due to my neck arthritis acting up and causing a lot of pain and discomfort which is radiating up and causing a headache. I was supposed to see my therapist today at 3:30pm but I'm going to probably reschedule because I don't feel like sitting upright right now. Resting on my Boomerang pillow is helping me so much right now. I'm about to take my muscle relaxer and I cannot take it and drive because it makes me super groggy. I am super frustrated with my body - I am only 34 and I have osteoarthritis and/or CFS or FM. I really hope that my next appointment with the rheumatologist is productive and I get more answers - one idea I have is if physical therapy and/or injections would help. But I won't know more until 1/12 when I see her again.
 

cmack

Moderator
Staff member
I hope you are feeling better Caro. How are things going with the hernia? There are hernia belts that can help the surrounding muscle repair itself, they can sometimes help prevent surgery.
 
Hello everyone. I have had Crohn’s Colitis for three years. I had to have a temporary colostomy seven months ago due to serious complications from a recto-vaginal fistula that could not be repaired. I do not plan to ever have it reversed as long as there is no cure for Crohn’s, which probably won’t happen in my lifetime. I am 60 years old. I have a bad discharge that is non-stop. Since the fistula has not healed, it’s from both ends. I’ve read some horror stories stemming from having a permanent colostom, but this discharge is making me miserable. Can anyone give me advise as to what I should do?
 
Hello everyone. I have had Crohn’s Colitis for three years. I had to have a temporary colostomy seven months ago due to serious complications from a recto-vaginal fistula that could not be repaired. I do not plan to ever have it reversed as long as there is no cure for Crohn’s, which probably won’t happen in my lifetime. I am 60 years old. I have a bad discharge that is non-stop. Since the fistula has not healed, it’s from both ends. I’ve read some horror stories stemming from having a permanent colostom, but this discharge is making me miserable. Can anyone give me advise as to what I should do?
I'm sorry, I've been blessed to never have had a colostomy bag. But many on this site has so hopefully you'll get some times soon. Prayers
 
I hope you are feeling better Caro. How are things going with the hernia? There are hernia belts that can help the surrounding muscle repair itself, they can sometimes help prevent surgery.
Hi cmack,
I just wanted to thank you for your reply and to wish you all the very best for this new year
caro😊
 
Ah, stacked by other medical issues, sums up my life as of late. I at this point try to avoid the doctors office at all cost. Not only do I leave with other medical issues that require more medication but my doctor always has this almost sad, defeated look every time he sees me... Last week was the first time he actually said to me that he feels sorry for me.. Nice to be acknowledged and all but I already get enough reminders at home at how different my life is compared to people my age.
 
Ah, stacked by other medical issues, sums up my life as of late. I at this point try to avoid the doctors office at all cost. Not only do I leave with other medical issues that require more medication but my doctor always has this almost sad, defeated look every time he sees me... Last week was the first time he actually said to me that he feels sorry for me.. Nice to be acknowledged and all but I already get enough reminders at home at how different my life is compared to people my age.
Hello Sarah,
Sorry you are having a difficult time. I have had bad days at the doctors too. Just know Better days always do come . I am sending you positive thoughts so you remain strong. And at least, we have this forum to exchange with other people that can understand us.
Sincerely,
caro
 
Just had a major argument with the partner now I'm in so much pain just want to cry. Feels like I've been stabbed hate crohns fed up with it now
 

cmack

Moderator
Staff member
I'm sorry to hear things are going so badly. Feel free to vent, we are understanding folks.
 
Hey everybody I’ve been away from the site for awhile it’s been about a month since I had a bunch major surgeries.

How’s everyone doing?
 
Thanks cmack

I’m only allowed to lay in bed right now no lifting or sitting down it’s hard to get used to.
 
Hope you are better soon
Thanks Ron
I’m surprised I feel as good as I do I had a rectal stump blowout which caused severe damage to my bladder and abdomen they had to reconstruct my bladder and remove my rectum.My limited time sitting is not fun and the spasms aren’t pleasant but other than that I’m fine just really tired.
 

cmack

Moderator
Staff member
Thanks Ron
I’m surprised I feel as good as I do I had a rectal stump blowout which caused severe damage to my bladder and abdomen they had to reconstruct my bladder and remove my rectum.My limited time sitting is not fun and the spasms aren’t pleasant but other than that I’m fine just really tired.
Wow! You have been through a lot Tubes. I sure hope you get healed up as soon as possible. Feel free to vent if you need to as well. You have my support.
 
My doctor would rather that j didnt use Immodium (not sure why ) but my symptoms were bad enough last night that I used it last night.
 
My doctor would rather that j didnt use Immodium (not sure why ) but my symptoms were bad enough last night that I used it last night.
That’s weird is there anything else they suggest you take? My docs got me maxing out on Imodium.
 
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