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Posted 1/24/2016 3:15 PM (GMT 0)
Hello. I'm new to this forum and this is my first post!
I'm wondering if people are having the same problem as me. I am awaiting surgery as my colitis symptoms are dreadful: E.g 8-10 bowel motions a day, severe weight loss and bad pain. My main problem is pain. When I'm going to the bathroom, especially in the morning time I have horrific pain, and I don't mean cramping pain, I mean severe, agonising pain when going. They started me on tramadol but it hardly touches it. The only thing that works for me is Oramorph(morphine) which they won't give outside the hospital. I find this rather silly considering that my pain level is so bad... I mean who wants to be in hospital for three months? If anyone else is having this problem I would appreciate the response.😊
Posted 1/24/2016 3:33 PM (GMT 0)
Hi...welcome to the forum.

What meds are you on? You're flaring at this time...rectal meds will help if you're not on them.

q
Posted 1/24/2016 3:42 PM (GMT 0)
It sounds like an anal fissure to me. Painkillers wouldn't help much with that. In fact they may make it worse by making you more constipated. I did have something similar to what you had before my first surgery, only it felt like the 'tear' was just outside my butthole and not on the inside. Unfortunately I never showed it to a doctor, so I never got their opinion. Steroids were the only thing which made it go away, but it - and the excruciating pain during/after having a BM - would invariably come back after a while.

Had I not been going to have surgery I'd have tried harder to find a treatment, but instead I ended up staying on steroids until my surgery. There are various ointments which can be prescribed, plus sitz baths can help.

www.mayoclinic.org/diseases-conditions/anal-fissure/diagnosis-treatment/treatment/txc-20168258

Apologies if I'm completely on the wrong track.
Posted 1/24/2016 3:49 PM (GMT 0)
Hello and thank you for your replies. My medications are Asacolon 1,600mg x2, Lanzol x1, Humirax1 weekly, prednisone 5mg, Buscopan 20mg x3, tramadol 50mg ( I use them a lot for pain but they don't really work!!), Desunin 800ui, Melatoninx1, and Xanax when needed.

Thank you also for your suggestion about anal fissures but my doctor said it's not that. Unfortunately I seem to be in a constant flare going 8-10 times a day on max treatment.

How do you manage your pain? Has anyone been given Oramorph at home? It's the only painkiller that works for me.

I have tried rectal treatment but it was stopped as it had no effect.

Post Edited (Senan) : 1/24/2016 8:52:34 AM (GMT-7)

Posted 1/24/2016 3:54 PM (GMT 0)
What rectal meds, for how long?

q
Posted 1/24/2016 4:01 PM (GMT 0)
Hello Heather. I was on Salofok enemas for weeks. It was effective at first but then it caused a lot of burning and discomfort so it had to be stopped. I was then put on suppositories for 2 weeks but they were without effect.

*Senan*
Posted 1/24/2016 4:21 PM (GMT 0)
I have been there where I would be in so much pain on the toilet I would nearly pass out. i am sorry you are going through that. I agree that morphine is a bad idea as it slows your bowel. I also agree with you that tramadol does not fight the pain effectively.
I know this sounds basic but I found it to be amazing. Take a hot water bottle that is really really hot and it helps with the pain. Put it on your lower abdomen. Sometimes I would alternate with an ice pack.
Ativan might help also even though it's an anti anxiety.

Can you try a sulfate free version of salofolk?
The us version is called Rowasa and they make a sulfite free one, maybe that would help. Just I don't know if it's available to you
Posted 1/24/2016 4:35 PM (GMT 0)
I am so glad to meet someone who is experiencing the same pain as me. It's unfortunate that there is no effective treatment of pain for people like us. As I said Morphine is the only thing that works. Tramadol barely works, on bad days it does nothing. Did you find Atavian helped with your pain. I do take Xanax PRN but it's for sleep?

Senan
Posted 1/24/2016 4:52 PM (GMT 0)
the Ativan helped relax me and made me less anxious about the pain. But I felt better when I was on it. It was IV version I'm not sure if that makes a difference.
when you have a BM is it actuall fecal matter or just blood and mucous?

Have you been tested for c. Diff very recently
Posted 1/24/2016 4:59 PM (GMT 0)
Yes it is fecal matter each time. Very little blood at the moment. I believe I must ask if I was tested for c-diff. I just however finished a months coarse of Flagyl and Distaclor. I finished it a week ago. I did try prozac in case i was apprehending my pain but it made me very jumpy and I had to stop it. How do you test for C-diff.
Also, for the past while I have literally been stuck in bed. Any suggestions on energy improvement( even if it's only temporary)

Post Edited (Senan) : 1/24/2016 10:04:24 AM (GMT-7)

Posted 1/24/2016 5:10 PM (GMT 0)
If your BM are formed they will not want to test for c. Diff

It's a stool test and the most common one is checking for toxins by PCR
Posted 1/24/2016 5:50 PM (GMT 0)
I just checked there. Yes I was tested for c-diff and came back negative. Any advise on energy improvement??
Senan.
Posted 1/24/2016 6:08 PM (GMT 0)
do you know if you are anemic or deficient in anything?
Posted 1/24/2016 6:42 PM (GMT 0)
No. Actually my haemaglobin is normal (12.8) bit my white cells are high (13) as would be expected. But today and yesterday I am really bed bound. I mean I'm eating and all but my body needs to be constantly sitting down! I'm only 15 so for some one my age this is quite odd.
Posted 1/24/2016 7:28 PM (GMT 0)
With all of your BMs it is likely that you are deficient in things other than Iron
it is also possible to be anemic with a good hemaglobin

you really should have tested your cbc, cmp, b12, ferratin, iron and crp

when was the last blood work you had?

I see that you are "awaiting surgery" does this mean you have a date scheduled or that you are sure that it is in the future for you?

please make sure your surgeon is an excellent colorectal surgeon who has performed many colectomies before.
I am assuming that you are European based on some of the terms you used,
make sure your GP or GI sends you to a good facility that is very experienced.

good luck
Posted 1/24/2016 10:56 PM (GMT 0)
what dosage of tramadol are you on? I was prescribed 50mg in the past and I found that it didn't touch the pain so I got the ok to up it to 100mg. And let me tell you....that was a BIG difference. Please check with your GI though before increasing any pain meds. If you are at a lower weight than it won't be safe to increase the dosage. And I should warn you that while I could work on 50mgs, at 100mgs I was way too loopy to work.

It's funny how everyone reacts differently to pain meds. I found tramadol more effective than morphine.

I hope you feel better soon.
Posted 1/24/2016 10:56 PM (GMT 0)
I believe this belongs here:

Senan said...
No. Surprisingly I have 12.8 haemaglobin which is perfect but high white cells (13). But the last two days I am extremely weak, hardly able to move!

Posted 1/25/2016 12:55 AM (GMT 0)
Yes I am on 50 mg tramadol at the moment. I will consult with my GI specialist about upping the dose. Does anyone find that 100 mg tramadol with paracetamol increases its potency? I've also read about a painkiller called Vicodin and I'm wondering if people have had any experience with this medicine?
Posted 1/25/2016 2:29 AM (GMT 0)
Vicodin is not a good idea for a flare is it will slow transit times. This can increase risks for toxic megacolon.
I have used it after a hand operation prior to being diagnosed with UC
Posted 1/25/2016 6:06 PM (GMT 0)
That's a good point. That's the last thing I want! Is there any good opiates that you can take for colitis. Percocet I heard people saying was good. What do you take yourself?
Posted 1/25/2016 10:51 PM (GMT 0)
the only pain medication that they give whre I am treated is tramadol and tylenol
(obviously for extenuating circumstances like surgery they give more)
all of the meds like morphine, dilaudid, percocet, vicodin...slow down transit time and increase risk your risk of megacolon
sometimes antispasmodics help with pain, and i use really hot heat packs or water bottles as they help
and I just grit my teeth and bare it.
when I was diagnosed I was on a lot of dilaudid and morphine and my colon nearly perforated (i than switched to where I am now and they stopped those meds at once)
Posted 1/26/2016 12:08 PM (GMT 0)
Oh God, you must have been in terrible pain when you were on medication like that. My GI refuses to give me anything stronger than tramadol/codiene. I'll try the hot water bottle tip and see how it goes. Thanks a million for your help:)it's good seeing how people with colitis deal with there pain.
Senan.
Posted 1/26/2016 9:45 PM (GMT 0)
Were you in constant pain or just pain before during and after a stool?
Posted 1/27/2016 12:13 AM (GMT 0)
I was in constant pain but when I felt like I had to have a BM i was in agony
and until I finished with it it was completely excruciating
I am doing much better now thankfullly
have you seen any improvement?

have your humira levels tested to make sure that you dont have antibodies or to make sure there is enough in your serum
Posted 1/27/2016 12:35 AM (GMT 0)
Thankfully, I'm only in pain before, during and after a bowel motion. I haven't had my Humira levels checked yet, but to be honest I am thinking of coming off it as it seems to make me worse for some reason... did anyone else find this happened?
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