Crohn's Disease Forum » Support Forum » Vent Away » Feeling alone because of Crohn's


05-11-2018, 01:19 PM   #1
Tim641
 
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Join Date: May 2017
Feeling alone because of Crohn's

Recently my Crohn's has gotten worse. I've been waking everyday in the middle the night in pain and having to rush to the toilet and it's so exhausting. My friends are amazing in the sense that they listen to be but they don't understand the pain that I go through and sometimes my family just dismiss me thinking that I'm overreacting but I'm not. It hurts so much sometimes that I want to cry. I've been on Infliximab for almost 7 months now and it was actually helping until a month ago where I just didn't see an improvement. Usually after my infusion I feel better but after my last one a month ago I haven't felt any better. Getting out the house on time in the morning can be a real struggle sometimes.
Just wanted to know if anyone has ever felt like this and it's not just me?
05-11-2018, 02:58 PM   #2
Tgregg93
 
Join Date: Jun 2017
Location: Missouri
I wish you didnít have to go through this. As far as friends and family, Iím sure they try to understand. Itís just hard to comprehend when the symptoms are mostly internal. If our guts had windows so youíll could see whatís going on, I think people would understand way more.

Donít give up on Remicade. Iíve had periods of time when I thought it was pointless, but itís big help. Iím sorry the pain has been so bad lately. Have you considered the use of cannabis?


05-11-2018, 03:07 PM   #3
Tim641
 
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Join Date: May 2017
I wish you didnít have to go through this. As far as friends and family, Iím sure they try to understand. Itís just hard to comprehend when the symptoms are mostly internal. If our guts had windows so youíll could see whatís going on, I think people would understand way more.

Donít give up on Remicade. Iíve had periods of time when I thought it was pointless, but itís big help. Iím sorry the pain has been so bad lately. Have you considered the use of cannabis?
I've thought about medical marijuana but I'm just not that sure of the effects. And I know that my family wants to help me but like you said it's mostly internal and they're trying their best.
05-11-2018, 03:26 PM   #4
Tgregg93
 
Join Date: Jun 2017
Location: Missouri
Itís great that they hear you out. Iím sure they feel helpless at times and just want you to feel better.

Maybe itís not for everyone, but itís helped me tremendously. Donít panic, itís organic. Helps my symptoms of nausea, pain, brain fog, solidity of stool, appetite, mood, and more. I think itís a blessing, really. Been using cannabis for over ten years and doctors say my lungs are beautiful. It works for me. I doubt the risks are true, but I wouldnít care if they are. Still worth it to me.

Itís not just hype. You will feel better. (Cook with it if you donít like smoke) Some people saw Reefer Madness and believed every word. I watched it and laughed my diseased ass off.

Look up how they used to ďtestĒ the side effects. They essentially murdered the lab animals by depriving them of oxygen. That kills anyone, regardless of what you burn.


05-12-2018, 01:09 AM   #5
Lynda Lynda
Senior Member
 
Join Date: Feb 2018
Location: Arizona
Tim, sending you my support 🌻

My sister does the same thing, she thinks I am over-reacting and she dismisses me.
I'm already tired and sick, I can't waste my precious energy and time on trying to convince her I AM sick and it is real......that takes so much effort ( sigh )

Sending you hugs 😊

Check out all the support groups and posts 🙂
05-13-2018, 10:06 AM   #6
dotjoiner
 
Join Date: May 2018
Sending you empathy Tim..
Was wondering whether you have had your Vitamin D checked lately? Research has shown that this vitamin is commonly low in Crohn's. It can certainly cause or aggravate depressive symptoms (well-known in nordic winters as SAD - Seasonal Affective Disorder.)

In addition to assisting to regulate calcium, Vitamin D has more recently been found to have critical immune system function/regulation. For example it can turn down inflammatory cytokines, eg IL17, and assists with gut infection resistance.

Check Vit D levels first together with calcium levels/kidney function before supplementing (see your doc). Do not supplement if there is a high calcium (the latter is always abnormal and must be investigated and the cause found and treated by doc/specialist).

If you are also on medium to higher doses of Vitamin D supplementing simultaneously with Vitamin K2 is important imo. (K2 helps get calcium out of the blood and into the bones, thus is good for osteoporosis too.) Periodic blood checks of Vit D/biochem are needed to check your vit D levels are optimal.

Some recent research has found that magnesium is also commonly low in Crohn's. This is not good since so many enzymes (>300) need Magnesium as a co-factor to work. Vitamin D too needs magnesium. Magnesium is also well known to assist anti-inflammatory processes.
We need of course the *full orchestra* of vitamins, minerals, nutrients. Yet in various diseases certain nutrients/vitamins may be needed in greater or lesser amounts, depending on the condition.
(Btw, blood magnesium levels are not reliable in assessing magnesium sufficiency.)
Always check with your doctor/s first, especially if on prescribed meds, other treatment, or have had surgery, kidney problems etc.

Hope this helps, and hope you feel better real soon!
06-04-2018, 07:57 AM   #7
embyrr
 
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Join Date: Oct 2015
Location: Brussels, Belgium

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Bud, you are by far not the only one. In fact, your post resonated with me immediately. I've been to the bathroom nine times today and it's 14:56. It's driving me crazy and the fatigue and inflammation aren't making anything else easier. Work is harder as a result.

I have friends visiting this week and I know I won't be able to go out and have fun. My close friends all know I have Crohn's but it's true that unless you experience chronic pain it's not easy for you to understand what others go through. Don't put it on them though, just be happy they don't have to shoulder it as well.

A word of advice is that maybe finding a physical support group will give you a much-needed forum for discussion. Everyone will get where you're coming from then.
06-04-2018, 09:09 PM   #8
MizzSarah
Senior Member
 
Join Date: Oct 2016

My Support Groups:
Definately know where your coming from. Know that we understand what your going through and weíre here to listen and sometimes vent occasionally

Fatigue and just general unwellness is something that plagues me everyday. I use the word plague because it literally feels like a black cloud just hovering over you and at all times. Your pain in legitimate and donít ever question that. What you feel is what you feel.

I have a few supportive friends and they try to understand but you canít fully understand something you have not experienced. So I donít often talk to them about the full details of my condition.

Give Infliximab a chance to run its course. I wish there was a quick way to figure out What works or not. Pfft, that sure would make life a whole lot easier.



Recently my Crohn's has gotten worse. I've been waking everyday in the middle the night in pain and having to rush to the toilet and it's so exhausting. My friends are amazing in the sense that they listen to be but they don't understand the pain that I go through and sometimes my family just dismiss me thinking that I'm overreacting but I'm not. It hurts so much sometimes that I want to cry. I've been on Infliximab for almost 7 months now and it was actually helping until a month ago where I just didn't see an improvement. Usually after my infusion I feel better but after my last one a month ago I haven't felt any better. Getting out the house on time in the morning can be a real struggle sometimes.
Just wanted to know if anyone has ever felt like this and it's not just me?
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