Life isn't good.

[ktp112]

I need some sort of support or someone's opinion or someone to relate to or something because I'm just not feeling too great right now... Recently my Crohn's has been causing all sorts of problems for me and I'm absolutely tired of it! I've been in and out of the hospital, totaling at least 5 trips over the past two months, yet nothing's getting better. My doctor started me on Remicade after one of my stays, and I'm on my third infusion... He's been optimistic since we started, but I'm starting to worry that it's not working at all because I'm still feeling absolutely terrible.

I'm having severe pains, almost constantly, which are keeping me from going to classes and basically keeping me from functioning. I'm on oxycodone for the pain, but I'm pretty sure my body has become dependent on them and it's gotten to the point where I need a dose higher than the amount my doctor prescribed to alleviate the pain. I've gotten into trouble because I'd have to take them more and more often, causing me to run out early. Which led to scolding from multiple doctors, being called an addict and having to suffer from withdrawals on top of the pain because the doctors refused to give me additional medication.

Now I find out that I might have to have surgery, but my doctor wants to wait a little longer to look at a CT scan and see if the Remicade starts working... Leaving me to just wait it out, craving pain medication that doesn't work anymore, unable to sleep well at night and feeling utterly depressed and helpless... I hate being dependent on the pain medication, I hate not being able to do anything, I hate being in pain every time my belly grumbles and I hate that my grades and life in general are suffering! Ugh. Life is NOT good right now.

 

[kiny]

If you're on a third infusion and still in pain I really wonder if it does anything at all. What has the time been between your infusions, 8 weeks? Have they checked your blood for antibodies?

 

[ajalily1]

I can totally relate to everything you said. I am in the same boat. It can definitly get very depressing. Especially when you feel like no one understands what you are going through. I talk to my mom, and husband about the pain, and how I'm feeling so awful 95% of everyday. But unless you actually have this disease its hard for anyone to relate to you. It takes everything I have to try to stay positive. And I am failing at the moment as well. Have you ever had surgery for your crohns? Surgery changed my life. I had 7 years of remission and no symptoms. And it was the most wonderful gift. But I have been in and out of the hospital the past couple months and am right back to where my crohns was before my surgery. Please know that it does get better. This website is extremely helpful. Alot of kind,educated people to help you get through this. I'm sorry I don't have much more advice for you. But I do understand what you are going through and I hope it gets better

 

[Sailorluna]

Do hot baths or heating pads help with the pain at all?

 

[CrohnsChicago]

So sorry you have to suffer like this, ktp112

Sometimes it takes a few weeks (around 3-4 months I think) to respond to Remicade working....and it is possible some of the symptoms you are experiencing are side effects of adjusting to the Remicade. As much as it sucks to be in pain, it sounds like your doc is playing it safe and making sure the right decision is being made for your treatment.

Where is your inflammation? Are there any obstructions or other abnormalities? What types of symptoms are you experiencing where you need these strong pain meds?

Hopefully surgery will help bring you into remission so you can find some comfort.

I hope that positive change happens for you very soon! Until then, continue to vent here as much as you need...we here to listen.

:hug:

 

[ktp112]

My doctor is waiting to look at the CT scans I just had to determine whether or not the remicade is working... and I know he's playing it safe, I'm just tired of being in pain and tired of waiting! It makes me feel so helpless. I've been struggling with a partial obstruction, which is why I've been in and out of the hospital. The CT scan will hopefully show if it's inflammation or scar tissue that's been causing the problems and that'll determine whether or not I need surgery.

Nothing I've tried for the pain really works, except for more frequent dosing of the pain medication, which leads to me running out early and suffering from withdrawals... which is something I'd like to avoid. The pain happens whenever anything passes through the area below my belly button. My intestines have also been making a lot of loud grumbling noises, almost constantly, and when these noises happen, i get sharp, stabbing pains.

I know that there's not much I can really do right now except wait, but it just sucks feeling so helpless on top of suffering from pain at all hours of the day.

 

[Stressed Mom]

My son is 18 and was in this exact position for months until he finally had surgery October 30. I know how hard it was for me to watch him to suffer through this and my heart goes out to you, I can't imagine how hard it is on you but like I said I had to watch him go through everything you are dealing with and it's terrible. He is slowly tapering off the pain meds, he became dependent also from dealing with the chronic pain and partial obstructions for months so our dr is slowly weaning him off. I am so very sorry you are going through this terrible time and hope that you can find relief soon.

My son would lay with a heating pad against his back, sounds weird I know, but for him it helped ease the cramps.

Stay strong you will get through this we are all here to support you :ghug:

 

[jlm]

I understand completely what you are going through. I've had Crohn's disease for 16 years. Reminded worked amazing for me for almost 9 years. It was wonderful. 3 years it randomly stopped working. I had surgery (my fourth one) Two years ago and from that point I haven't gotten better. Surgery led to a fistula that eventually closed about 7 months later.
Since surgery I've had a stupid time. Bathroom at least 12 times a day everyday. No life can't go anywhere or doing anything. I'm 25 and have been off work since April of this year doing nightly TPN feeds and talking morphing like candy. Over the last 3 weeks its gotten worse and I've doubled the dose of morphine. Luckily my GI is a lot nicer the yours. Today she scheduled me and emergency MRI. I know I have some kind of stricture going on. I can feel it. If you able to hold off a little bit give the remicade sometime, especially if it can give you some more time being surgery free. I know it's difficult when you feel so terrible.

 

[ktp112]

I've had to drop down to part time in school and am worried that I won't even be able to complete this semester because of my health. My pain medicine intake has gotten pretty bad and I have to constantly ration myself and am constantly worrying about running out before my next appointment. This weekend I don't know if I'll even have enough to make it through and my doctor won't see me til Monday. And every time I go somewhere else to ask for medication, they treat me like I'm an addict trying to get my fix. I just hate living like this and want it to get better! I just plain don't know what to do! This weekend is going to be miserable, filled with pain and withdrawals...

 

[2thFairy]

Many people don't start to respond to Remicade until around the third or fourth infusion, so it's reasonable that your doctor would want to check a CT scan before deciding on surgery. However, that doesn't help you today, does it? I feel for you...

Oh, and kiny, the first 3 Remicade infusions are 2 weeks apart and then start at 8 weeks apart after the third.

 

[ktp112]

I'm actually considering just going to the hospital at the end of the week if things continue to get worse. I definitely will if I have an especially bad night. I just don't know if how I'm feeling justifies a hospital stay. I don't want to go there and tell them that I've been having pains and nausea and have them tell me that I shouldn't be going to the hospital for what I'm feeling or something.

 

[flowergirl]

i got lucky with the remicade. it started working almost immediately. i know others it can take a while to kick in? have you had any improvement at all? maybe humira would be a better fit?

 

[ktp112]

Nope. No Improvement as far as I can tell. I'm still in pain and nauseous all the time and I'm still having troubles functioning. My doc wanted to wait til after the 3rd infusion, which I had about a week ago, to decide what to do from there. I do think Humira is next on the list, though.