Advise please.

[Dharrison]

Hi all new to this forum and was just wondering if any one has any advise and support?

It all started april off this year with really bad lower abdo pain feeling sick/being sick going to toilet about 4 times daily but never diahrea just soft and floating stools (sorry abit to much lol) really bad sweats and I never ever used to sweat lol really bad pains in my knees and trouble with eye sight :-s have been in hospital about 8 times this year now with really bad flare ups and over the time iv had blood tests some normal then some not stool sample which showed inflammation then a endoscopy which was normal :-s and finally just had a mri scan of small bowel which showed mild non specific inflammation within the last part of my small bowel yet my pain is so bad every day followed by nausea daily :-( back to see my gastro on 9th December but was just wondering is there any one else with a similar story to share with me what's happening lol always been fit and active and only 23 but this year has been the worst and really took its toll on me.

Thanks for reading and look forward to my advise

 

[JustAYoungLad]

My Crohns is only in the small bowel too. An colonoscopy showed no signs of inflammation in the large colon. Only a MRI and a CT scan could help identify inflammation in the small bowel as both an endoscopy and a colonsocopy can only reach so far into the small bowel.

There is also a barium meal test that involves you drinking a milky, chalky drink and then a radiographer takes a x-ray every so often and track it tavelling through the small bowel.

Have you had a colonoscopy? Endoscopy is from the north, Colonoscopy is from the south.

Are you on any medication to get your crohns under control?

 

[Dharrison]

Had both camara tests done had 4 stomach ulcers which have now healed and the other showed nothing but the doc didn't finish it as it hurt to much :-(. Also I have had the ct scan were I had to drink something then they injected ink I think into a vain but showed nothing apparently only tests that have shown inflamation are stool sample and mri of small bowel. Medication wise I'm currently on pentasa lansoprazole cyclazine for nausea and tradamadol and 1 amatriptline on a night time but about 2 months ago doc put me one one months worth of steroids which really working but 2 weeks after the course finished the symptoms came back :-(.

 

[JustAYoungLad]

Yeah that's the thing that sucks about steroids, they work well but you can't stay on them for too long and then when you reduce them your symptoms come back. I've been there too.

Pentasa is quite a weak drug for Crohn's. It helps people stay in remission but its not great as a reaction drug. Lansoprazol will help you too, but is unlikely to solve your Crohn's inflamation. Helping you stop producing too much stomach acid that can upset the bowels.

You should ask your GI about other medications and what's his/her view are moving forward. There are so many different drugs with are more powerful than Pentasa and more effective (in my opinion). I moved on to azathioprine after Pentasa not working for me. With the more powerful drugs the potential side effects can be stronger, although not more likely.

Hopefully others will drop in and have some more tips and advice. Like you said it's hard being young and feeling so tired all the time. Hope it gets better for you!

 

[Dharrison]

Yea pentasa doesn't seem to help but I was put on that before I had my mri scan and only just recieved the results today in the post and back to see the specialist on the 9th December so hopfully then he can clear things up and get a plan moving forward . It's really weird since it all started at beginning of the year which seems like ages ago lol my eye sight is very poor long distance (never had a promblem before) and the leg pains and abdo pain seem to be linked some how on my good and bad days it's all very strange. Hope you are doing well aswell as it is so demoralising luckily it's not affected my job with all the hospital vista this year.

 

[drewpalermo]

You should look into pure spring water, medicinal mushrooms like reishi, chaga, cordyceps, etc, and goji berries. Those have nutrients that teach your white blood cells to work better. And of course get on a clean (organic) diet

 

[Dharrison]

Thank you will defiantly look into that

 

[grt73]

Suffered for years and years with similar symptoms to what you are getting, had both camera tests and showed nothing. Was told I had ibs even though my blood esr results showed massive inflammation somewhere. Docs not really interested I found and they ended up saying I was depressed. Err yeah I was due to the daily pain and discomfort I was getting. Idiots!!! My pain used to come and go with what I now know to be flare ups, they seemed to get worse each time. I could go 3 years without any hassle. Think back over the years you may have suffered without realising. I too had eyesight issues and also what felt like arthritic pain. Totally knocks the crap out of you after a while, people don't realise how hard it can be just to drag your arse out of bed in the morning. Anyway it turns out I had Crohn's for twenty odd years and last year I was rushed to stoke mandeville hospital with fever and cramping. Had an X-ray and a ct scan and it showed I had a complete blockage in my ileum. Emergency surgery happened and then followed eight of the worst weeks of my life. The only blessing was that jimmy saville wasn't still lurking the wards, that would have just about finished me off I reckon. Anyhow what I'm trying to say is make sure the docs give you the attention you deserve. If you are in pain then there is a dam good chance something is wrong. Keep pushing them until you find the answer. Our No Hope System has a fine way of brushing stuff under the carpet and only treating people who have visible problems. I am now recovering well after a year of hell and am hopefully awaiting a resection at some point. Am now on azathiapine and although this year has been a mission I can't remember the last time I felt this well!!! Get all the tests done and get yourself a bit better matey!

 

[Dharrison]

Really sad to hear you was going through all that it really is the worst thing I have ever had and wouldn't wish it on my worst enemy.

What gets me is I have imflammation in my small bowel which the mri scan show and on really bad days I have blood in my BM which the doc has seen yet in the letter they class it as non specific imflammation what's that all about lol this year has really knocked me and I just hope on the 9th I can get some sort of wonder drug (like the steroids) were I can just feel normal again

 

[Dharrison]

What's every ones use for pain relief as at the mo nothing seems to be working for me?

 

[user 289400]

Read thruough your story quickly. I started on Pentasa then moved to Asacol, later adding Azathioprine as I couldnt stay anything like well when stopping steroids. Now added Omeprazole and things are going well. I managed well for pain on Tramadol, but the doc was not happy to let me use it for too long, so now i juggle Codeine phosphate with paracetamol, but GP says no more than 4 codeine phos a day because it slows the bowel too much. I suspect they will try and stop that too, so I am going try yoga and or meditation or something so that it is not an endless round of drugs for pain. Hope you get your pain under control soon.

 

[ce1210]

Medical Marijuana helps tremendously with pain, also stimulates appetite, helps with inflammation, and doesn't have the nasty side effects of narcotic pain relievers like codeine (ie constipation, possible liver problems, urinary retention, irritability, addiction/withdrawal, dehydration, itching, decreased appetite, etc).

 

[JustAYoungLad]

Medical Marijuana helps tremendously with pain, also stimulates appetite, helps with inflammation, and doesn't have the nasty side effects of narcotic pain relievers like codeine (ie constipation, possible liver problems, urinary retention, irritability, addiction/withdrawal, dehydration, itching, decreased appetite, etc).

That sounds good and is a shame as marijuana is illegal in the UK in any forms. There are chemical tablets which have similar properties avaliable but they are very expensive and quite controlled. One day I can see it being legal for medical use but not in the imminent future.

For DHarrison, I normally just take parcetomal and if its really bad tramadol. Like GuyFox said you can't tramadol for too long, but they do work well. They made me very sleepy and zooned out all the background noise. The only time I slept a full 8 hours in hospital was on tramadol.

I would avoid taking any anti inflammatory painkillers like ibuprofen or aspirin as they can upset the stomach more.

 

[Dharrison]

I'm on tramadol at the mo have been since the beginning of the year at max dosage and with amatriptline but some days like today really struggle as it really doesn't help with the pain.

 

[JustAYoungLad]

I'm on tramadol at the mo have been since the beginning of the year at max dosage and with amatriptline but some days like today really struggle as it really doesn't help with the pain.

I'm sorry to hear that . I was briefly on 1 tablet a day of amitriptyline a while ago to slow the bowel down but it made me feel like a zombie, always tired.

Don't worry about me saying you can't be on it too long. The medical doctors know more than me .

I think you said you see the specialist soon? If I was you I would try and get a GP appointment tomorrow and get something stronger. Don't suffer in silence there is all wonders of drugs out there.

Hope you feel better soon!:ghug:

 

[Dharrison]

I'm sorry to hear that . I was briefly on 1 tablet a day of amitriptyline a while ago to slow the bowel down but it made me feel like a zombie, always tired.

Don't worry about me saying you can't be on it too long. The medical doctors know more than me .

I think you said you see the specialist soon? If I was you I would try and get a GP appointment tomorrow and get something stronger. Don't suffer in silence there is all wonders of drugs out there.

Hope you feel better soon!:ghug:

Yea see specialist on Monday and going to see gp tomorrow as since yestaday I really am so tired and carnt be bovered to do anything what so ever and now this terrible pain boooo lol

And thank you for all the support

 

[johnnywestervelt]

Medical Marijuana helps tremendously with pain, also stimulates appetite, helps with inflammation, and doesn't have the nasty side effects of narcotic pain relievers like codeine (ie constipation, possible liver problems, urinary retention, irritability, addiction/withdrawal, dehydration, itching, decreased appetite, etc).

I used to get alot of relief from weed. No legal way to get it where I live and my work tests now so its no longer an option for me.

 

[wild_one353]

my symptoms started 8 months after taking a course of antibiotics. now new research is showing damage to the bacteria in the intestines as possible the main cause of ibd. this is why i believe restoring the bacteria in IBD will be a cure, and small trials have shown Fecal transplants to have done just that. learn more about them here- http://www.crohnsforum.com/showthread.php?t=52400