• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Suffering from IBD symptoms but cant get a diagnosi

S

sallyk

Hello, Im not really sure if I should be on this forum, but I am at my wits end and wondered if anyone out there can give me some advice?:sign0085:
I have long term consequences of having Cauda Equina Syndrome, which is managed by copious amounts of medications including a moderately high dose of morphine.Im waiting for a spinal cord stimulator to control the pain but they wont do it because of fever which comes with tummy issues as they are wary of infection, sooo frustrating as i could potentially stop the morphine and other tablets that control my bladder. I have had terrible tummy issues for the past 3 years now and had mri which showed thickening entire colon... and concluded with @SUGGESTIVE OF INFLAMMATORY BOWEL DISEASE.although i have been taking the morphine for ten years now and before this all started i used to open bowels in the morning normal formed stools. since this started I alternate between diarrhea up to 10 times day and night and constipation if i dont go just for one day the swelling in my left side is visible and painful. i usually treat this with a dulcolax but the following day i am in the loo all day/night.i also had a ct scan which showed thickening in Ileum, the camera up bottom which couldn't be completed because of stools despite the enema. i finally had a colonoscopy which was normal and from then on drs say its fine nothing to worry about, but i cant live with this much longer.:thumbdown:the last 2 weeks i first got big ulcers in my mouth along bottom lip and underneath my tongue, thankfully not in my throat which has happened before, my temp varies from 37.2-37,9, soooo tired spending 3to 4 days a week in bed sweating pain in tummy especially to the right of my tummy button a really sharp pain that eases off when i take morphine. i am nauseous constantly and frightened to eat as i know its going to make things worse. I have lost 2 stone since this started and just want some advice is it just IBS or something more worrying? Whenever I eat anything with or without the other symptoms my tummy bloats almost immediately. it doesnt seem to matter what i eat i look 5 months pregnant. the swelling is uncomfortable but bearable. also i dont know if this is relevant but my fingers swell and i cant wear my rings. my eyes are really gritty and gunky, i am blowing my nose much more than usual, and my stools are accompanied by orange mucus. since this started my stools almost always are fluffy and float diff to flush away and vary considerably sometimes even a large motion formed, sometimes diarrhea sometimes really thin like a pencil width but mostly are soft fluffy and lots of the orange mucus. today, i have a lot of pain in right area of tummy button, temp is 37.9 left area is ok as yesterday i passed stools all day every half an hour so i'm empty. headache not that bad. please if anyone has any advice i will be eternally grateful. i apologise if i shouldnt be posting on here as i don't officially have IBD but was just hoping for some advice. thank you really grateful for any advice. Sallyx ps i had a faecal calprotectin test 6 months ago it was slightly raised at 196 nothing to worry about. also forgot i have to take vit d as level was low at 28, and also folic acid but these will stop soon. i asked about retesting levels but they said not necessary?
 
Last edited:
S

sallyk

sallyk said:
Hello, Im not really sure if I should be on this forum, but I am at my wits end and wondered if anyone out there can give me some advice?:sign0085:
I have long term consequences of having Cauda Equina Syndrome, which is managed by copious amounts of medications including a moderately high dose of morphine.Im waiting for a spinal cord stimulator to control the pain but they wont do it because of fever which comes with tummy issues as they are wary of infection, sooo frustrating as i could potentially stop the morphine and other tablets that control my bladder. I have had terrible tummy issues for the past 3 years now and had mri which showed thickening entire colon... and concluded with @SUGGESTIVE OF INFLAMMATORY BOWEL DISEASE.although i have been taking the morphine for ten years now and before this all started i used to open bowels in the morning normal formed stools. since this started I alternate between diarrhea up to 10 times day and night and constipation if i dont go just for one day the swelling in my left side is visible and painful. i usually treat this with a dulcolax but the following day i am in the loo all day/night.i also had a ct scan which showed thickening in Ileum, the camera up bottom which couldn't be completed because of stools despite the enema. i finally had a colonoscopy which was normal and from then on drs say its fine nothing to worry about, but i cant live with this much longer.:thumbdown:the last 2 weeks i first got big ulcers in my mouth along bottom lip and underneath my tongue, thankfully not in my throat which has happened before, my temp varies from 37.2-37,9, soooo tired spending 3to 4 days a week in bed sweating pain in tummy especially to the right of my tummy button a really sharp pain that eases off when i take morphine. i am nauseous constantly and frightened to eat as i know its going to make things worse. I have lost 2 stone since this started and just want some advice is it just IBS or something more worrying? Whenever I eat anything with or without the other symptoms my tummy bloats almost immediately. it doesnt seem to matter what i eat i look 5 months pregnant. the swelling is uncomfortable but bearable. also i dont know if this is relevant but my fingers swell and i cant wear my rings. my eyes are really gritty and gunky, i am blowing my nose much more than usual, and my stools are accompanied by orange mucus. since this started my stools almost always are fluffy and float diff to flush away and vary considerably sometimes even a large motion formed, sometimes diarrhea sometimes really thin like a pencil width but mostly are soft fluffy and lots of the orange mucus. today, i have a lot of pain in right area of tummy button, temp is 37.9 left area is ok as yesterday i passed stools all day every half an hour so i'm empty. headache not that bad. please if anyone has any advice i will be eternally grateful. i apologise if i shouldnt be posting on here as i don't officially have IBD but was just hoping for some advice. thank you really grateful for any advice. Sallyx ps i had a faecal calprotectin test 6 months ago it was slightly raised at 196 nothing to worry about.
Click to expand...
 
S

sallyk

hi thanks for your reply...yes they did an mri couple of years ago i had to drink 2 loads of water with different stuff in it.....the mri showed thickening affecting the entire colon and concluded ....suggestive of inflammatory bowel disease....but dr says its ok nothing to worry about??
 
Jabee

Jabee

That all sounds awful. I have a couple of questions about your Cauda Equina syndrome: do you know the cause? Is it spinal stenosis or something else your doctors have specified? I ask because it does sound like something is going on; mouth sores, eye issues, abdominal pain (not to mention your test results) indicate an inflammatory or infectious process. One of the possible causes of Cauda Equina syndrome is severe untreated ankylosing spondylitis which can co-exist with crohn’s. Do you currently see a GI? Can your GP refer you to one? I know things move slowly in the UK (and they can here in the US depending on insurance and individual doctors as well as access to specialists) but I honestly think you should see one. I cannot fathom why they have told you there is nothing to worry about when you have obvious inflammatory changes on your MRI and CT scan. Since they can’t put in the spinal cord stimulator due to fevers, they should help figure out the origin of the fevers. Do you have a good GP who can help?
 
Sophabulous

Sophabulous

I agree with Jabee, yes things can be slow here in the UK but your test results alone really warrant investigation, never mind your symptoms! Definitely push for a 2nd opinion, they can’t leave you as you are if you’re suffering so badly.

Good luck, let us know how you get on x
 
S

sallyk

Hi thanks so much for your message its nice just knowing that maybe I should be seen again but as soon as colonoscopy said everything was ok Drs don't think anything is wrong so all i can do is take yr advice and ask to be seen again...I'll get on the case Monday !!! Thank you all again so much its cheered me up knowing you take me seriouslyx
 
S

sallyk

Jabee said:
That all sounds awful. I have a couple of questions about your Cauda Equina syndrome: do you know the cause? Is it spinal stenosis or something else your doctors have specified? I ask because it does sound like something is going on; mouth sores, eye issues, abdominal pain (not to mention your test results) indicate an inflammatory or infectious process. One of the possible causes of Cauda Equina syndrome is severe untreated ankylosing spondylitis which can co-exist with crohn’s. Do you currently see a GI? Can your GP refer you to one? I know things move slowly in the UK (and they can here in the US depending on insurance and individual doctors as well as access to specialists) but I honestly think you should see one. I cannot fathom why they have told you there is nothing to worry about when you have obvious inflammatory changes on your MRI and CT scan. Since they can’t put in the spinal cord stimulator due to fevers, they should help figure out the origin of the fevers. Do you have a good GP who can help?
Click to expand...
Thanks so much for your message it really means so much for someone to listen. Ces was caused by herniated disk i was supposed ti b sent to kings college same night or next morning but they left me 13 days in local hospital i didn't even know what was wrong only that a huge herniated disk needed to be decompressed urgently..it was one excuse after another until hubby finally lost his temper then i was transferred but as i now know the delay has caused the residual pain in legs and back and bladder dysfunction i rely on a stick to walk short distance20mtrs max otherwise I'm in a wheelchair. I really wish they would give me a diagnosis whatever i have because if the fevers are caused by inflammation as opposed to infection then i imagine spinal cord stimulator could go ahead...anyway thank u so much I really appreciate your message xx
 
S

sallyk

hanks so much for your message it really means so much for someone to listen. Ces was caused by herniated disk i was supposed ti b sent to kings college same night or next morning but they left me 13 days in local hospital i didn't even know what was wrong only that a huge herniated disk needed to be decompressed urgently..it was one excuse after another until hubby finally lost his temper then i was transferred but as i now know the delay has caused the residual pain in legs and back and bladder dysfunction i rely on a stick to walk short distance20mtrs max otherwise I'm in a wheelchair. I really wish they would give me a diagnosis whatever i have because if the fevers are caused by inflammation as opposed to infection then i imagine spinal cord stimulator could go ahead...anyway thank u so much I really appreciate your message xx
 
S

sallyk

ronroush7 said:
Is he giving you any medication for it? If not, I might consider a second opinion
Click to expand...
Hi thank you again for your message...no medication to help with tummy tbh if i wasn't taking morphine for my back and leg pain i don't think I could cope with all this other pain...im going to ask on Monday for urgent referal for second opinion....is it unusual for. People to wait for ages before they get a firm diagnosis? Thanks again 😊
 
ronroush7

ronroush7

sallyk said:
Hi thank you again for your message...no medication to help with tummy tbh if i wasn't taking morphine for my back and leg pain i don't think I could cope with all this other pain...im going to ask on Monday for urgent referal for second opinion....is it unusual for. People to wait for ages before they get a firm diagnosis? Thanks again [emoji4]
Click to expand...
There is a section on here for people who are undiagnosed.
 
S

sallyk

thank you i did post on that thread....hopefully I'll get some replies from people in a similar situation thanks for your message
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
Since you once had a 196 calpro result, I would push to at least have another one. Take a sample when your symptoms are at worst.

Do you remember when you had the colonoscopy if your symptoms were really bad in that time frame? Did they take biopsies?

In the meantime, I would encourage to try a food diary and see if certain foods can be triggers.

Have you ever tried supplemental liquid diets? (ex: Boost?) How do these go?
 
S

sallyk

hi thanks for your advice , i was sweating all night and sick... and kept pooing orange mucus no poo at all just the mucus... i had colonoscopy at the end of a period of feeling poorly, i will ask for another fcp test will it work with mucus as im not passing any ordinary stool atm just the mucus...theres a horrible smell about me i keep washing and changing underwear but it doesnt seem to go away???anyway this morning i feel a bit better i feel a bit hungry so going to try eating something and see what happens...i havent been offered any supplements or liquid foods just the vit d and folic acid supplements as they were both low the vit d very low at 28 folic acid not so bad but low. thanks again for your message :)
 
Jabee

Jabee

I re-read your original post and realized I forgot to address the 2 stone weight loss. Losing that much weight is no small matter. What do your doctors say? Weight loss, vitamin deficiencies, and your other symptoms suggest something that needs to be evaluated and treated, separate from the issues relating to CES. In addition, did your doctors tell you what caused the disk herniation? Was there a precipitating injury? And I am aghast the hospital so mismanaged you that you remain in pain. Constant low-grade fevers are not normal! I really hope you can get referred to a GI who can give you a proper diagnosis and start relieving your pain (and other symptoms).
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
You could also take a picture of the mucus and show it to your drs.
Im guessing a good spoon of mucus could be good for calpro, if thats all you have, but I am not 100% sure. Best to take first specimen in the morning.

Liquid supplement diets can be bought at the drug store without a prescription and could be a good way to get nutriments more easily when difficulty with digestion. Drink water in order to avoid dehydration.

How many days have passed without stools or diarrhea?

If you still are not passing stools and have swollen belly and high discomfort and pain again next time you eat I would consider going to the emergency. An Intestinal blockage is possible and it would be safe to check for that.
 
You must log in or register to reply here.
Top