HealingWell
Search Close Search
☰

Pain pain and more pain

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/6/2010 1:14 AM (GMT 0)
Hey All,

 I have been in what the docs call drug induced remission for about 4 blissful years..using Imuran as my maintanence drug.. Well my luck has come to an end.. I see my GI on Friday.. it has taken a long time to finally get an appt.. does anyone else get to the point where they cant eat a thing with out so much cramping...gas .. bloating your stomache making so much noise its crazy.. then burning pain through the infected spot which as far as I know is still located in the illieum only.

  I am to the point I just dont want to eat anything...cause I know its just gonna be too painful.. I have even gone to just eating a few pudding cups in a day...I already have a protien absorbtion issue.. and am losing weight and energy fast...but does anyone else get to the point that a flare causes you to not be able to tolerate anything..even ensure??

Thanks for reading: Mimi

Posted 10/6/2010 3:52 AM (GMT 0)
If it were me I'd be in the ER where I wouldn't have to wait to be helped.  Your pain needs to be controlled, and you need IV fluids if you are not eating/drinking.  Maybe I just jump the gun, but after all these years I get tired of waiting around in pain.
Posted 10/6/2010 4:15 AM (GMT 0)
I think Mag has a really good point.
Posted 10/6/2010 4:39 AM (GMT 0)
me too! if you're in so much pain why couldn't your doc squeeze you in? sorry you're feeling so bad- get to the ER and let them help you out in the meantime...they're funny there though...last time they wouldn't take my word for it when i said there was some bleeding...had to stick a finger in my butt to see for themself! hehe. hope you feel better soon!
Posted 10/6/2010 6:07 AM (GMT 0)
I've been in so much pain these last couple months but since I am so young....21yrs ild they just think I want the pain killers but I was taking dilauded pills 4mg....and not even that would work....but I am still yet to get this under control since I have no more health insurance.....you should really get this under control to live a normal life...Sincerely Johnny
Posted 10/6/2010 12:46 PM (GMT 0)
Mimi your story sounds like mine and I was so well for so long on immuran that when i stopped eating 3 weeks ago and had the burning and pain I didnt know what to do really... I waited for appointments, and no one prioritized me, until I prioritized myself and ended up in ER on IV fluids. I lost 40lbs over the last number of months and ten in the last week. I agree with comments above, go get the help you need at the ER. You have to take care of you_ I am learning now that avoiding it makes it worse. You shouldn't be in pain and suffering when there are things out there to help you. And yes I wasn't eating much of anything, even pudding... water and crackers was my stable for days until I ended up in ER. I hope you feel better soon.

Best of luck

B
Posted 10/6/2010 1:26 PM (GMT 0)
I agree with all the above, I think its time for you to take control since everyone else has you in a waiting mode. I would go to the ER. Sounds like the fluids and pain meds are what you really need right now. Good luck and keep us posted. Hugs!
Posted 10/6/2010 4:25 PM (GMT 0)
When I was first dx'ed, I had stopped eating because it caused so much pain and it made me not want to eat anything.  I am 5'11" and weighed 120 lbs.  My GI at the time said they could hospitalize and tube feed me or put me on FMLA and start me on Remicade (I hadn't been on any Crohn's meds prior to this).  I chose Remicade and it put me in remission, but took a few months to get back to eating normal. 

 

I would call the drs office and see if they've had any cancellations for today or tomorrow.  If not, then decide if you want to go the ER or can wait until Friday.  If it was longer, I would say to call the dr. and tell them he needs to get you in sooner or else go to the ER, but it's only 2 more days now and that makes it harder for them to work you in sooner.  I've never felt that the ER did much for me (just charged me a lot for an IV), but only you know how bad you are feeling and how little you've had to eat/drink.   

Posted 10/6/2010 6:32 PM (GMT 0)
I was really bad a couple of years ago, severe diarrhea, pain and weight loss, but I had no health insurance so I was trying to just deal with it. Every time I tried to eat, I would take 3-4 bites and not be able to eat any more. Sometime even the smell of food cooking would be enough to double me over in pain. Make sure you drink lots of water. Drink Gatorade or Smar***er for the electrolytes. When I was admitted, my potassium and magnesium were dangerously low.

My family forced me to the ER. I told them I had a history of crohn's and had been flaring for over a year. They did a CT scan, saw the inflammation and admitted me for 4 days until they could stabilize me with IV fluids and antibiotics and start me on Entocourt.

Take yourself to the ER. Looking back now, I wish I hadn't waited as long as I did. A year after that hospitalization I was back in the hospital having a resection due to a perforated colon. The Dr said that due to the inflamation that I had "been dealing with for so long" it had narrowed and weakened the wall of my intestine. He perforated me trying to scope me.

Not trying to scare you, but the longer it goes untreated, the more damage you are doing to your body.

Good luck and let us know how it goes!

 

Posted 10/7/2010 4:53 AM (GMT 0)
i'm not sure why some docs are so hard to get into...i had to miss my appt at Mayo due to a bad sinus infection delaying my remicade which i wanted to have done prior to seeing my doc...i called today and got an appt for tomorrow...i guess sometimes the "front office" doesn't get it...tell them it's urgent and you need to see the doc or you'll find a new one.
Posted 10/7/2010 3:01 PM (GMT 0)
Wow..
you guys are all really amazing and supportive... I saw my GP and she gave me a antispazmatic..which I dont find helps much... and pain meds.. but with them I seem to being going back and forth between constipation and D... not sure which one is more painful... I am just eating Jello and Italian ice right now... I am drinking gateraid... I see my GP tomorrow...which is a horrible day for me..my mom is having life threatening surgery the same day...and now I cant be with her...because I need to go to this appointment which I dont dare cancell.. I am Canadian and to get into see a doctor in this country takes forever... I have lost 25lbs in 2 months..which is ok.. I had gained that from Prednisone so had it to spare..I admit I am afraid of gaining it back if I go on Remicade...not for vanity...but because of how hard it is on your body to gain and lose weight like this...no one understands the pain and stress a flare up has on us.. and all the emotional issues behind it.... I will keep you posted on what GI says tomorrow

Thanks for listening Mimi
Posted 10/8/2010 3:56 AM (GMT 0)
hi Mimi,
Sorry you're flaring right now. I am Canadian too. Couple points:
- once you "get in" with your gastro, you will be on the short list. If you're really sick, and they've seen you lately, they get you in ASAP. eg waiting time for my GI is he's booking now in February.. but I call and I'm in within the week. Was just joking with dh today that I feel like Madonna or Cher - I'm on afirst name basis with them..LOL It sounds like they're not getting you in quickly becasue you've been in remission so long. If the wait is too long, see next point...

- if you're waiting too long to see your gastro because of a long remission, use the back door method. Go to the E.R. at night. The attending will not have one sweet clue what to do with you, and he'll either call your gastro and ask for advice over the phone, or hold you til morning and have your gastro visit.
PS Take an ambulance , then you won't have to wait in the waiting room.

- Once you get to your stage of a flare, pain meds don't help much. when you're in a severe flare, vomiting, tons of cramps and sharp pains, explosive D, mouth sores.. etc. The only way to rid most of that pain is to be drugged out of your tree. Now, don';t get me wrong, I'm a huge fan of pain meds, but with severe acute pain like bad cramps, I find it doesn't really help. It helps more with the joint pain, full body ache, and fistula pain.

-Find something that you can tolerate better than the others and stick to it until you see your GI. For me I practically lived on vegetable soup and mashed potatoes until the mouth sore got so bad I just had powerade and a bit of boost.
The hit list is different for everyone but I suspect you already know some of your "avoids"..some of mine when flaring are :
anything with seeds
popcorn
citrus
fried food
coffee!!!!
roughage
any dairy except hard cheese.. I may as well eat ice cream directly on the throne.

- when you get to the ER/GI lay it on thick. This is not the time to suck it up and sugar coat things. "doubled over in stomach cramps, explosive D 15+ times a day, mostly blood and white chunks (mucous), severe urgency, nausea, vomiting, etc etc.
Posted 10/8/2010 4:51 AM (GMT 0)
Tara said it all- I am Canadian and understand and agree with EVERYTHING tara said- lol

It was so frustrating for me that since February 2010 I been feelin sick, losing weight, and being ignored because, Yes , I had been in remission 12 years but no one seemed to understand that I know that my crohns is back- I know I am sick- why else would I lose 40lbs and be in pain constantly??? Finally the ER had to keep me 2 weeks ago until the GI would see me urgently. Now get this, I live in the arctic- so I have to FLY on a once a day scheduled flight for 3 1/2 hours to see my GI in Ottawa... I know, that is just scarey how far away from help I am. As a result, I really have learned that laying it on thick in the ER is the ONLY way to get the attention. That doesnt mean to lie- because your symptoms are real and serious. Just don't be modest- that was always my mistake from February to September this year- which I have most recently learned a big lesson from. I have now accepted my role as drama queen when necessary to get the help I need. I have now gotten some attention and hopefully will not have to worry about waiting to book for months when the issue is urgent.

:)

Gnight all

B
Posted 10/8/2010 5:30 AM (GMT 0)
haha, the "Coles' Notes" version of getting help for IBD in Canada.. ah well, at least its free ;) I would have been bankrupt several times over if I lived elsewhere.
Posted 10/8/2010 7:23 AM (GMT 0)
**** you guys...Nothing like the Canadian medical system humour..I am From British Columbia.... but your right I do suck it up...why is it I feel like I am the problem... doctors are so hard to get into..and when you do its like they dont believe its as bad as you say... but this disease is darn painful.. this flare is more painful then my last..more cramps.. but I dunno if it cause I am not eating that I alternatge between constipation and D...which I never had before..and both are equally painful just in different ways.

.the pain meds dont do much nor is the antispazmatic..but wish me luck.. I finally see him tomorrow...and I hope I get some help.. last time I had my check up he said if I flare it will be right to remicade and he had me do the pre testing for that so I didnt have to wait...I admit I am nervous about doing it... but what I am going through now is no life..

thanks so much for the ER tutorial..and good laugh.. I always feel like I should not clog up the ER and leave it for sick people.. its hard to admit hey.. I have a painful incurable disease and its not my fault and right now that sick person is me... I am very stubborn and prideful by nature... I have to learn to ask for and accept help...and definately have to learn to be a drama queen...but I think I am up to it eh!

Mimi
Posted 10/8/2010 12:06 PM (GMT 0)
hahaha- sure thing. And I am all about the Coles notes version of the ER. :) I thought I would mention my current love affair with my heating pad. I find it helps with the pain- I sleep with it and it helps. Maybe u should try it? I don't find the anti-spazmatic to help me either and the tylenol 3s help some. But me and that heating pad- well.... lets say it is a wonderful thing. I always had constipation problems only but lately I have been alternating- 15Xs/day D and then suddenly a day of nothing and then C. It is so confusing. Yogurt helps the C and "regularity" when I can get it down.

Best of luck with your appt!

B
Posted 10/9/2010 1:54 AM (GMT 0)
Don't feel bad!!!!! Are you kidding; half the people in there have a splinter or a sore throat.. You ARE SICK! And deserve to be helped ASAP!

When I was in the ER with a case of erythema nodosum which mutated into a bad pyoderma gangrenosum (and then my whole calf around the PG got cellulitis and I turned septic..) I was watching, in extreme pain, these folks being wheeled in looking fit as a fiddle. Sitting up on the darn stretcher, smiling like a cheshire cat. If you didn't know, the people on social asstc have their OWN version of the back door method, and it's called Call an Ambulance for anything, including a Hangnail because then I don't have to pay Taxi fare . I watched over 20 people go in by ambulance TRANSFER (non-emergent) while I was having my blood poisoned more with each passing moment.

If you are in severe pain, do not feel bad about calling an ambulance. They call it an ambulance transfer and that way you don't have to writhe in agony on one of the super uncomfortable chiars for 6 or more hours.. there's no lights or siren, but at least you get a bed. Really helpful with D/fistula pain/vomiting etc. That said, 9/10 times I endure the waiting room anyway but it's nice to know there's another route when you're in major agony.
✚ New Topic ✚ Reply