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Fed up

P

penny

fed up

hi my name is penny.been diagnosed with crohns for several years.had small bowel resection 18mnth ago.recent small bowel mri showed more narrowing .going to start humira on tuesday not looking forward to it .did try one dose of inflixiab but had a rash after first dose .consultant said could happen with humira.currantly taking predisone an also morthine when pain at worst.get so tired an find it hard to concentrate because i dont get much sleep .constant runing to the loo .i joke sumtimes of moving in to the bathroom as i spend most of my time there .somedays though the crohns realy does get me down as i would like to do more than i can manage .:)
 
Emily

Emily

Location
Pittsburgh, Pennsylvania
I really hope you get some relief from Humira cause it sounds like you are having such a tough flare :( Don't be too anxious about the injections, I find that when I get anxious before my injections, its worse than when I just relax about it. 10 seconds of injection is not so bad in the grand scheme of things if it'll get you into remission, which I really hope it does! Good luck, and tell us how the Tuesday loading doses go!
 
P

penny

thanks i will let y ou know how it goes i will try not to stress but doesnt help with not sleeping .an please bare with me as i do have trouble with technology haha .would be so nice to get this crohns under control as would love to spend more time with my 6 year old .makes you feel realy guilty when they want to do things an you just so tired all the time:yfrown:
 
C

Crohn's 35

Inactive Account
Hi Penny, Remicade affected me severely and then I tried Humira , it is a different type of protein, Remi is mouse and Humira is human. I was on Humira , I used the syringes because needles dont bother me but Humira only worked for 6months.

Because you have had a resection have you had your B12 checked? This will boost up your energy to get b12 shots, I get it once a month. As for the diahreah that can be helped with Questran, yeah it isnt the most pleasant tasting but it works for most of us. I no longer have to take it.

So glad you joined our forum, hope to see you join in some of our fun as well!
 
P

penny

hi just typed reply dont no where that went haha still geting used to forum .no not had b12 cheked will have to ask about geting that done .ive got these spots so sore on my back they call them pyroderma gangrenosum on 3rd lot of antibiotics they go down scar an reapear.have you ever had these.fingers crosed should start humira on tuesday .its realy good talking to people who no how crohns makes you feel.yes would love to join in the fun aswell.could realy do with a good laugh right now .
 
xJillx

xJillx

Your Story Forum Monitor
Hi Penny and welcome! I am sorry there was narrowing found so soon after surgery. That must have been upsetting. But I am crossing my fingers for you that Humira works wonders for you.

Please keep us posted. Good luck!
 
P

penny

thank you yes me to consultant said options limited now just dont fancy more surgery .my weight has droped right down to 55kg cant eat much as goes strate threw .they did tell me to eat as much junk food as i can rather than proper meals .
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hi Penny, really sorry you are having a tough time. I definitely agree with Pen about having your B12 checked especially if you had your resection at the terminal ileum as this is where it gets absorbed. I am having a few issues at the moment and am being woken up in the night to go to the loo, I think interrupted sleep is so draining on the system. Good luck with the humira - hopefully this will help calm things down.
 
P

penny

hi yes will defo ask nurse on tuesday about b12.i know what you mean about sleep i tend to go 3 days with no sleep ime mentaly an physically drained and some people wounder why ime arsey at times .they say o dear you look so tired hope you manage to get some beter sleep real soon and thanks for taking time out to talk to me
 
B

butafli

Hey Penny,
So sorry to hear you going through such a tough flare. And I know how hard it is with kids. I have a 6yr, 3yr and 2yr old and had a resection in April after feeling like crap for months. I've been feeling ok up until a couple of months ago when the D started really bad!!! Have just started Questram 3 days ago so I'm hoping it kicks n soon. Hey, how did you know about your new narrowing? I'm very scared to think I may have more alos. And so soon after surgery. But I have a sore right side again and am wondering if that is only caused by narrowing or can it be caused by just inflammation. I'm almost to scared to know. I'm on 6mp and Pentasa It would be great to hear if you have the right side pain also.
 
SnowDay

SnowDay

Location
Ireland
penny said:
thank you yes me to consultant said options limited now just dont fancy more surgery .my weight has droped right down to 55kg cant eat much as goes strate threw .they did tell me to eat as much junk food as i can rather than proper meals .
Click to expand...
That's pretty unbelievable. These are supposed to be health professionals. I realize they are saying this because of your low weight and the high calorie count in junk food, but junk food is full of things (and cooked in a way) that will enflame the digestive system and ultimately make things worse.
 
carrollco

carrollco

Junk food makes me sick. Popcorn, if one can consider it as junk, just lodges in my narrowing intestines until I get the most unbelievable cramps. Same with Triscuits and other bread/wheat products. So be careful what you eat. As for Questram, they tried me on it and my triclycerides went to 1200. I thought the doc was going to keel over.

I'm on Humaria now, but it did take a month or so before it kicked in so have patience.

Bless you all, especially those of you with young children.
 
P

penny

hi yes not realy sure what to eat doesnt make much diffrance to symptoms .appetite so poor at min .see how i take to humira on tuesday if the nurse even bothers to turn up .she was supose to have rang me monday.my injections coming tues but no good if nurse dont come and show me how to do them .but thanks i will be be patient hope you ok .
 
P

penny

SnowDay said:
That's pretty unbelievable. These are supposed to be health professionals. I realize they are saying this because of your low weight and the high calorie count in junk food, but junk food is full of things (and cooked in a way) that will enflame the digestive system and ultimately make things worse.
Click to expand...
thanks ill just have to keep trying diffrant things hard when no appetite hope you keeping well:D
 
P

penny

Pen said:
Hi Penny, Remicade affected me severely and then I tried Humira , it is a different type of protein, Remi is mouse and Humira is human. I was on Humira , I used the syringes because needles dont bother me but Humira only worked for 6months.

Because you have had a resection have you had your B12 checked? This will boost up your energy to get b12 shots, I get it once a month. As for the diahreah that can be helped with Questran, yeah it isnt the most pleasant tasting but it works for most of us. I no longer have to take it.

So glad you joined our forum, hope to see you join in some of our fun as well!
Click to expand...
hi pen did reply to last mesage but think mite sent it rong haha o never mind i will get used to it
 
P

penny

butafli said:
Hey Penny,
So sorry to hear you going through such a tough flare. And I know how hard it is with kids. I have a 6yr, 3yr and 2yr old and had a resection in April after feeling like crap for months. I've been feeling ok up until a couple of months ago when the D started really bad!!! Have just started Questram 3 days ago so I'm hoping it kicks n soon. Hey, how did you know about your new narrowing? I'm very scared to think I may have more alos. And so soon after surgery. But I have a sore right side again and am wondering if that is only caused by narrowing or can it be caused by just inflammation. I'm almost to scared to know. I'm on 6mp and Pentasa It would be great to hear if you have the right side pain also.
Click to expand...
hya sorry you in pain again i had a recennt small bowel mri which showed narrowing again .it is tough as well when you feel rough an also have children to look after .my yougest is 6 so no how you feel.my pain is all over at times but generaly settles in mid or right hand side.i assume it can be caused by inflamation or narrowing but get some advice on that .i did try questram but that made me sick .i really do hope you start to feel beter soon
 
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