Again with the pain

[TheLazy1]

I don't think I'm in the middle of a flare up since the signs/symptoms are missing but there is still lots of pain.
It started about 2 weeks ago, it usually happens at the start and/or during a bowel movement.

It's hard to describe, but I feel like I want to rip my guts out with my bare hands.
Even the strongest over the counter pain medication does nothing, in fact, neither does tylenol 3.

The worst point was yesterday where I only could manage to eat some rice and was in pain most of the day.
I broke down and took a tylenol 3 after not needing any for quite a while and it did nothing to help with the pain.

I need to find a way to deal with this pain, the last time it was like this I became so depressed I would begin to almost cry at random points during the day.
I feel pretty crappy (lol) now as it is and I don't want it to get any worse.

Slightly OT:
On my last visit my doc mentioned that probably 20 years down the line I would end up with my colon being removed (or something).
Is that the way it is will all people with chrons?

 

[soupdragon69]

Hi TL1,

Sorry to hear you are having problems again..

Am just pondering out loud here ok? Wondering if the pain is more due to spasm of the gut as opposed to crohn's pain? It can be a really viscious pain. This summer whilst in hospital I was diagnosed with severe IBS ON TOP of my Crohn's.

It took a while for the anti spasmodic drugs to help me and I also use peppermint tea to drink and find it helps. When in hospital they also gave me peppermint water diluted in hot water. Sothey may all be alternatives to painkillers for you.

What I find now though is I can tell the difference between what is crohns pain and what is IBS most of the time because of where it is and what it is like.

Hope my thoughts help... and that you feel better soon too. Hang in there things will improve.

 

[Kev]

Hey lazy1.. sorry to hear about the pain. Short story, been there, done that, and it wasnt' nice. Lived for my pain meds... even they let me down at times. Heres' what I ended up doing when all else failed.. hot N cold packs, soaking in the tub, showers with pulsating shower head, chiropracter, all of those helped somewhat. Luckily for me, IF I could get to sleep, I sleep really deep, and could sometimes NAP during the worst. When all of those failed, I had to live with the pain.. Found that IF I could get my mind off of it, then it helped pass the time till my next med. for me, writing was a passion.. just one that I never had the time to pursue when I was well.. Work, life, whatever, just kept getting in the way. Then, with my IBD in full bloom, I kept a laptop handy, and when things got dark (constant pain will wear you down like nothing else), I'd start working my passion. It wasn't a magic pain reliever..., it just gave me something else to concentrate on, something that I liked, that I wanted, something I could do to work thru the pain, and meanwhile it perked me up.. I couldn't snap my fingers and make the depression that my pain added to go away, but at least at the end of the day I could look at what I wrote and feel positive. If there is something you've always wanted to do, but never did, no matter what... then break it out, dust it off, and give it a try. you literally have nothing to lose.

As for what the future holds for crohnies, with or without IBD, none of us has EVER been given a guarrantee about tomorrow, let alone 20 years down the road. The prospects aren't nice, concentrating on them today isn't going to change them. A lot could happen over the next 20 years. Just focus on the 'now' for right now. if you look after yourself, find your personal regimen, and behave yourself, what will be will take care of itself. Who knows ,the cure could be right around the corner!

 

[TheLazy1]

Well, I do have IBS aswell but the pains are totally different.
I can feel my gut spasming if it's IBS but this pain is like someone is stretching my guts out over a large distance.

I do find sleep to be a nice alternative, but then there is time gone that I could have done other things.
I don't like the idea of having to live with the pain but if that's all there is then there's not much else I can do about it.

Thanks for the advice though, I'll try a few of the things mentioned.

 

[Creepy Lurker]

I don't think I'm in the middle of a flare up since the signs/symptoms are missing but there is still lots of pain.
It started about 2 weeks ago, it usually happens at the start and/or during a bowel movement.

It's hard to describe, but I feel like I want to rip my guts out with my bare hands.
Even the strongest over the counter pain medication does nothing, in fact, neither does tylenol 3.

The worst point was yesterday where I only could manage to eat some rice and was in pain most of the day.
I broke down and took a tylenol 3 after not needing any for quite a while and it did nothing to help with the pain.

I need to find a way to deal with this pain, the last time it was like this I became so depressed I would begin to almost cry at random points during the day.
I feel pretty crappy (lol) now as it is and I don't want it to get any worse.

Slightly OT:
On my last visit my doc mentioned that probably 20 years down the line I would end up with my colon being removed (or something).
Is that the way it is will all people with chrons?

Could it be down to strictures? I tend to find that I can get excruciating pain as things 'make their way along' during bowel movements. During flare ups, it gets to the point where the pain alone will make me throw up. When I'm stable, it's just really uncomfortable.

My consultant informed me that they try to avoid removal of any parts of the bowel with CD as it tends to make the problems move to another section whereas with UC, it would be a complete cure.

 

[TheLazy1]

It might, but I had a colonoscopy at the end of September and on my last appointment he never said anything about a stricture.

That being said apparently he could only do 40% since there was too much inflammation and he didn't want to risk going any further.
I don't remember all of what he told me but there were some polyps and some
scar tissue in there too.

The pain is as you said though, when there is stuff moving on it's way down is when it hurts the most.
My last flare had almost 24/7 pain regardless so I don't think that's what is happening right now.

 

[Sojourn]

I have had that kind of pain before. It was a couple of years ago when I was trying to manage the disease outside of a doctor's care. I can remember how bad it was and even went into an ER once but all they did was take some scans, say there was some inflammation, and that I should see my doctor. I continued to work, but it was a good thing that I worked alone because sometimes I would just yell out in pain. I can't remember how long it lasted but I think, eventually, it got better. I think maybe that the inflammation was so bad that the intestines just became numb. Just an uneducated guess. And I can't say this was a good thing as an abscess/fistula developed over time of which I'm having to deal with now.

But it's different for everyone. Hope you get some relief soon. Maybe you should ask the doctor about some stronger pain medication, though, it can also make things worse.

 

[AbstractDonut]

Hmmm, from what I understand if its a stricture you do not really feel pain unless you become obstructed. So is it only after you eat? It shouldn't be right after you eat, some time after. Also the pain in crampy as in it goes away and comes back, another thing I read is that the stomach noises become louder. You hear lots of gurgling and groaning with a stricture.

If its constant pain I would think that it wasn't a stricture.

You should read the descriptions of the complications of Crohn's online and see if any symptoms of the complications sound like what your problem is. Some questions you might ask yourself? When does the pain happen, is it constant? Does it happen only when you go to the bathroom?

Perhaps you are just really irritated and the pain is the food rubbing along the irritation. I'm not a doc, you ask them.

 

[TheLazy1]

I'm starting to think now that it may be the beginning of a flare up.
On Monday I was so sick I threw up over 15 times during the day, even weirder that was after vomiting there would be a spotty rash from my abdomen all the way up my chest.

Two days before that I almost threw up, but the pains and feeling was the same.

Right now I have noticed:
1) Lost weight, down to 117 pounds from 126 (I'm 5'10)
2) Complete loss of appetite
3) Increase in bathroom visits (8-10 per day now)
4) Increase in pain

There are some missing symptoms like waking up to use the bathroom and the sweating I had the last time around though.

 

[Kev]

That rash might not be a rash. Could be hemmoraging (sp?) from vomiting. My ex suffered so much from nausea while carrying our youngest that she'd get severe bouts of vomiting. She'd come out of the bathroom afterwards with this tiny dots of red on her face. She thought it was a rash chickenpox or measles, etc.. until the doctor put her straight.. I vaguely recall him using a phrase lile petical hemm. or something... Hopefully there are others who heard or known similar. In any event, its not something to guess at, you should see a doctor

 

[TheLazy1]

Yeah, I'm going tomorrow.
I just thought it was weird since I never had that happen before even the last time I was that sick.

 

[kpratte]

Hmmm, from what I understand if its a stricture you do not really feel pain unless you become obstructed.

I've found it totally depends on the person.. Some people feel pain, some don't. Before my surgery I never had any pain except for occasional gas pains, even when I've gone to the ER with partial obstructions. Then there are other folks who have the slightest symptoms and get a ton of pain.

Since my surgery I get some dull pain sometimes after I eat in one particular spot, but like I said everyone is different.

- Ken

 

[TheLazy1]

I asked the doc and he had an explanation for the rash so I'm not worried about that anymore.
He wrote down my weight and asked me to see him again in two weeks to check it again.
I was also given a prescription for more painkillers if I need them.

Unfortunately my weight dropped again so now I'm down to 110 pounds, the urge to eat just isn't there often enough.
After a bout of intense pain I get really nauseated and forcing food down there is even worse.

All I can do is wait and see I guess

 

[Kev]

Yeah, I don't think anyone who hasn't had that experience can truly appreciate how it feels when eating.., eating anything, turns into like a daily nitemare. What got me thru it was the fact that taking my meds on an empty stomach was worse.

I mean, it still was a nitemare... I hated the thought each and every time I had to take my meds approached, but experience of taking those same meds with no food inside me brought me to the undeniable conclusion that not eating only made it worse. Even so, I got to a point where for a two week period I was so sick, I could barely manage to drink water to wash down my pills. that ended up with me being rushed into the ER (ha, rushed.. got there and waited for 12 hours before a doc saw me and admitted me - but at least they treated me and I eventually turned around).. Anyway, you are doing the right thing, seeing Dr. and doing follow-ups. I know it's not nice, but try to find something you can eat... it sure beats winding up in the hospital. Take it from one who knows, OK

 

[Jvstin]

what sucks is that sometimes we're gonna have pain even if there's nothing really going on. try to always hang on to a few good pain killers for times like this. I try to keep a few Lortabs on me at all times just in case.