Inflammatory bowel disease

Xassy · 04/01/14 - 22:31

I am being referred to see if I have inflammatory bowel disease as I am having some horrible bowel and stomach symptoms and have 2 close family members who have this condition. I have a rough idea of symptoms but I wanted to see how it affects other people. I appreciate it's personal but if anyone could tell me anything about their symptoms and the tests they've had to get diagnosed, I'd be really grateful. Thank you.

CloneClown · 04/01/14 - 22:59

I was diagnosed, after having a colonoscopy, with a severe case of Ulcerative Colitis four years ago and had put up with symptoms for a year prior to that. I had extreme abdominal pain and constant urgency for the toilet where I produced bloody loose stools at least 40 times per day. Often I could not get to the toilet in time which led to accidents which immediately effected my psychological state of mind because of the trauma of it all. I was housebound and ill with it every single moment of the day for three years and was hospitalised once where I was given every drug treatment. I was very close to having surgery but fortunately over time started to gradually respond to the drugs.

I've had a fantastic past year where my toilet habits are now back to normal and have managed to start working again in September. It was an absolutely devastating experience to go through and even now to some extent I haven't come to terms with it all and am equally overwhelmed about feeling better once again.

welshsarah · 04/01/14 - 23:14

my i ask what are the symptoms
i got something up with my stomach they say IBS but it's nearly everyday

Xassy · 04/01/14 - 23:36

welshsarah wrote: »

my i ask what are the symptoms
i got something up with my stomach they say IBS but it's nearly everyday

I've had diarrhoea for the last few months, probably going a lot less than described above though, poor CloneClown. However, I have also been vomiting every day, it's especially bad after meals. I have shrunk my diet right down because I cannot tolerate much food e.g. 2 fish fingers and a few boiled carrots for dinner tonight. The pain in my abdomen after eating is pretty horrendous and I also have bad pain when I get the urge to 'go'. Unfortunately, I seem to have lost the ability to wait. When I need to go, it has to be NOW or else. And 'or else' has happened a few times.

I seem to have some underlying stomach pain all the time. That's the worst. No amount of writhing or moving seems to help it but I just can't get comfortable when I'm in that much pain.

Have you had any tests? I've had some bloods and a stool test so far.

Xassy · 04/01/14 - 23:38

CloneClown wrote: »

I was diagnosed, after having a colonoscopy, with a severe case of Ulcerative Colitis four years ago and had put up with symptoms for a year prior to that. I had extreme abdominal pain and constant urgency for the toilet where I produced bloody loose stools at least 40 times per day. Often I could not get to the toilet in time which led to accidents which immediately effected my psychological state of mind because of the trauma of it all. I was housebound and ill with it every single moment of the day for three years and was hospitalised once where I was given every drug treatment. I was very close to having surgery but fortunately over time started to gradually respond to the drugs.

I've had a fantastic past year where my toilet habits are now back to normal and have managed to start working again in September. It was an absolutely devastating experience to go through and even now to some extent I haven't come to terms with it all and am equally overwhelmed about feeling better once again.

Thank you for sharing your story. My heart goes out to you but I'm so glad you are doing better now. My physical autoimmune condition has taken an awful lot away from me, so I do have empathy for how your illness affected you.

I wish you all the best.

[Deleted User] · 05/01/14 - 00:07

Hey OP, I've posted before about this as I'm currently being tested for Crohns, however after making a few dietary changes (more protein, less sugar & carbs), things are much, much better. I have a scan on Tuesday which involves an ultrasound (so I've been told) and Crohns' can take a long time to diagnose, also GPs don't appear to be very knowledgeable about bowel conditions so it takes a lot of self-educating. Don't forget it could be colitis, a food allergy, coeliac disease (which I already have) too.

I hope it works out for you and it's just a diet issue. Good luck and keep us posted.

snowy ghost · 05/01/14 - 01:28

I Had UC diagnosed in 1998...first bout was awful....steroids then maintenance on Asacol ever since
at my worst seemed to be going to the loo all night..terrible pain after eating as well...

had a sigmoidthing up my bum and screamed the place down...it was up there long enough to diagnose

CloneClown · 05/01/14 - 02:57

Thanks Xassy for your sympathetic response to my post. I'm happy to share more if you have any specific questions. One thing I will say is at my worst, I couldn't tolerate any kind of food or drink (not even water) - it was like it 'dropped' straight through me but I guess it's because the ability for your body to absorb is completely ruined when you have a bowel disease? Many people recover by modifying their diets but I always felt strongly that it isn't caused by a food issue. I am now back to eating everything that I was before with no problems although it took a long time for me to be able to tolerate different food types again. The only thing I've given up for good are fizzy and fruit juice drinks and now I only drink flavoured bottled water which I'm sure is helping to keep me look youthful! On a more humoured note my Mum appreciated this poem that I wrote for her on Mothers' Day:

Colitis is no fun
It's a pain in the bum
But one thing is for certain
I have the best Mum!

PS: I also had the sig test too and screamed the place down as well and even lost control whilst lying there on the trolley as they were doing it. Horrendous.

welshsarah · 05/01/14 - 04:12

thank you so much for saying about it
I had tests few years back they said IBS
this past 6 to 8 months I have terrible stomach pains and when I have to go I need to.. sometimes it's just like water it can last 3 or 4 times after that in the day

Xassy · 05/01/14 - 17:47

welshsarah wrote: »

thank you so much for saying about it
I had tests few years back they said IBS
this past 6 to 8 months I have terrible stomach pains and when I have to go I need to.. sometimes it's just like water it can last 3 or 4 times after that in the day

Did you have a colonoscopy?

welshsarah · 05/01/14 - 20:35

no just had to do sample test

Xassy · 06/01/14 - 01:54

welshsarah wrote: »

no just had to do sample test

Might be worth asking for a gastroenterologist referral?

jazzyjazzy · 06/01/14 - 14:53

MissPinotGrigio wrote: »

Hey OP, I've posted before about this as I'm currently being tested for Crohns, however after making a few dietary changes (more protein, less sugar & carbs), things are much, much better. I have a scan on Tuesday which involves an ultrasound (so I've been told) and Crohns' can take a long time to diagnose, also GPs don't appear to be very knowledgeable about bowel conditions so it takes a lot of self-educating. Don't forget it could be colitis, a food allergy, coeliac disease (which I already have) too.

I hope it works out for you and it's just a diet issue. Good luck and keep us posted.

I have wondered since your postings if you had been diagnosed yet? Good Luck for Tuesday.

MissDeeBlue · 06/01/14 - 23:15

Xassy wrote: »

I've had diarrhoea for the last few months, probably going a lot less than described above though, poor CloneClown. However, I have also been vomiting every day, it's especially bad after meals. I have shrunk my diet right down because I cannot tolerate much food e.g. 2 fish fingers and a few boiled carrots for dinner tonight. The pain in my abdomen after eating is pretty horrendous and I also have bad pain when I get the urge to 'go'. Unfortunately, I seem to have lost the ability to wait. When I need to go, it has to be NOW or else. And 'or else' has happened a few times. I seem to have some underlying stomach pain all the time. That's the worst. No amount of writhing or moving seems to help it but I just can't get comfortable when I'm in that much pain.

Have you had any tests? I've had some bloods and a stool test so far.

Xassy, have you considered that you might have SIBO? (small intestine bacterial overgrowth)
bacteria should not be in the small intestine, yet it gets there because of antibiotic use etc or something that lowers your good bacteria. In its worst form, it makes you intolerant to a LOT of foods. The result being eczema, hives, even shock! and a LOT of auto immune conditions
The only treatment for this is to clear the infection with antibiotics that dont harm good bacteria, or peppermint capsules (colpermin) along with a NO sugar diet.
Have a think what you might have eaten before the loo run.. it normally could be the bacteria in your small intestine that needs to be eliminated via diet (even one sweetie can send me doubled up in bowel pain)

I have SIBO. It was a long process being diagnosed. I cannot eat anything that is not natural or fresh for example, peanut butter must be organic, and have nothing in the ingredient list than peanuts, palm oil. If the item has added sugar or preservatives, I become intolerant. get underlying pain behind my belly button, and severe cramps/bloating/runs Its a nightmare, but makes the good days even nicer.

Prob is the NHS PooPoo <

((funny)) the SIBO idea, yet its the cause of many illnesses

Xassy · 07/01/14 - 00:21

MissDeeBlue wrote: »

Xassy, have you considered that you might have SIBO? (small intestine bacterial overgrowth)
bacteria should not be in the small intestine, yet it gets there because of antibiotic use etc or something that lowers your good bacteria. In its worst form, it makes you intolerant to a LOT of foods. The result being eczema, hives, even shock! and a LOT of auto immune conditions
The only treatment for this is to clear the infection with antibiotics that dont harm good bacteria, or peppermint capsules (colpermin) along with a NO sugar diet.
Have a think what you might have eaten before the loo run.. it normally could be the bacteria in your small intestine that needs to be eliminated via diet (even one sweetie can send me doubled up in bowel pain)

I have SIBO. It was a long process being diagnosed. I cannot eat anything that is not natural or fresh for example, peanut butter must be organic, and have nothing in the ingredient list than peanuts, palm oil. If the item has added sugar or preservatives, I become intolerant. get underlying pain behind my belly button, and severe cramps/bloating/runs Its a nightmare, but makes the good days even nicer.

Prob is the NHS PooPoo <
((funny)) the SIBO idea, yet its the cause of many illnesses

I have to say, I've never heard of that. I'll have a quick google. I do take a lot of antibiotics and my infections have exacerbated lately. I'm 3 immunosuppressive meds and probably get an infection every 6 to 8 weeks.

[Deleted User] · 07/01/14 - 00:23

jazzyjazzy wrote: »

I have wondered since your postings if you had been diagnosed yet? Good Luck for Tuesday.

Thanks jazzyjazzy. I'm not sure it is Crohn's anymore, but I'll let the scans & docs do their job

welshsarah · 07/01/14 - 01:14

lets us know how you get on

lotsobear · 07/01/14 - 01:32

snowy ghost wrote: »

I Had UC diagnosed in 1998...first bout was awful....steroids then maintenance on Asacol ever since
at my worst seemed to be going to the loo all night..terrible pain after eating as well...

had a sigmoidthing up my bum and screamed the place down...it was up there long enough to diagnose

Hey there!

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