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HELP! Is this ibs or ibd am so emotional, lost and need answers.

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Ulcerative Colitis
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Posted 3/27/2014 9:06 AM (GMT 0)
Hi everyone! Back again to ask more questions.

Have been very sick for months now.
Have posted before about not losing weight and not having crp levels rise when in a flare.

I am feel sicker every day and still have no answers from the drs.

Symptoms

Right sided pain tender when doctor presses on tummy
Occulant blood found in stool
Bloody mucus on stool
Slow transition of fecal.
Chills one minute but feeling very hot the next minute
Tired
Nausea and feel like I wanna pass out.


No diarreha and No weight loss
ALL blood test are NORMAL

Am on 2 grams pentasa
150 mg imuran

Just finished a 5 day course of prenisolone

What is everyone's opinion on this

Am so lost and emotional at the moment coz all drs are saying I am fine BUT I know I'm not something is going on and I just don't know what any more HELP!
Posted 3/27/2014 10:40 AM (GMT 0)
sheree,

I'm no expert, but wonder:

1) have you been tested for stool parasites, etc...
2) have you eaten something recently which could have given you some form of food poisoning?
Posted 3/27/2014 1:10 PM (GMT 0)
Have you reported this to your doctor and asked them? I would. All we can do is guess.
Posted 3/27/2014 2:04 PM (GMT 0)
Were you ever scoped with biopsies?
Posted 3/27/2014 2:27 PM (GMT 0)
Your symptoms are basically the same as mine were except I had raging loose stools instead slow moving stools. I don't loose weight and have never had elevated CRP or abnormal blood work in a flare. I would definitely take psllium husk fiber , eat fiber or take some other fiber supplement. Drugs can take time and it is hit or miss on them. What was your diagnosis? Proctitus, distal etc..
Posted 3/27/2014 5:34 PM (GMT 0)
I did a little bit of research on CRP levels in Ulcerative Colitis a while as go - as mine rarely rises and found several articles of research that show only approx 50% of sufferers show any rise during a flare (this is alongside a colonoscopy that showed active inflammation). The wording mostly used was "modest, if not absent response". However, on the flip side - the majority of Crohns patients will have a higher CRP. It was something to do with depth of ulcers ..... So don't be fobbed off because of this
Posted 3/27/2014 6:46 PM (GMT 0)
I'll second the stool tests for c.diff and parasites.
Are you taking any probiotics??
Posted 3/27/2014 6:59 PM (GMT 0)
I really don't think anyone can tell you what is going on. You have to go through the proper testing to get a diagnosis. At this point, I'd say you need to get a scope with biopsies to check for inflammation. That's really the only way to know whether you're dealing with IBD. It is kind of weird that the GI would start you on IBD meds without a diagnosis.
Posted 3/27/2014 7:13 PM (GMT 0)
I have had the same symptoms. For 2 months I had those same symptoms, plus burning in the upper colon. Went to the ER; but a different one than my GI went to. Decided it was time for a change. I had:
1. Small UC flare
2. C-diff
3. Crypto (parasite; not sure where I got it from)
4. Chronic Appendicitis.

They could not take my appendix out because the right side of the colon was in a flare. If they did, they would have had to take some of the colon out.

Admitted me; was on several anitibotics, and I about 5 days, was a new person.

Good luck.

Diagnoised UC 2/2012.
Lialdia - 2.4 daily
Posted 3/27/2014 8:06 PM (GMT 0)
I had the same symptoms except I had lost about 20 lbs.  I ended up in the hospital and had a diagnosis similar to lildidge - UC Flare and Chronic Appendicitis.  They didn't want to take my appendix out due to the flare so 6 days of IV antibiotics and IV steroids and I felt much better.  They still haven't taken my appendix out though; have they taken yours out lildidge?

I went to 4 different doctors in 2 years who all told me I just had IBS - then the flare led me to the hospital which led me to my diagnosis.

Posted 3/27/2014 8:35 PM (GMT 0)
sheree

I had some of your symptoms back in the beginning of my UC and they were related to extreme constipation. Extreme fatigue, felt like my blood pressure dropped, chills on a very hot summer day.
Doctors were of no help because they didn't connect this to my UC which was just barely being treated.

My suggestions have to do with eating food that is easier for your gut to process. NO fibrous food, not even fibrous veggies. Increase intake of good oils such as olive oil and coconut oil, these will help the constipation which is due to inflammation.

Keep taking your anti-inflammatory Rx meds but help them with an anti-inflammatory diet. Some docs think the answer to constipation is to eat fiber but that does not work on an inflamed colon. We need very gentle fiber and a lot of good oils (which are also anti-inflammatory).

Have you tried psyllium powder or another gentle fiber similar? I tried several until my gut said yes to Citrucel unflavored tablets. Took them for several years until reaching remission and now don't need them. But I still stay away from insoluble fiber.

Before UC I tended to be on the constipated side and the inflammation just made it way worse until getting the symptoms described.

Good luck. I wish I'd had this forum back then, it was a hellish time.
Posted 3/28/2014 3:53 AM (GMT 0)
Thank you all for your responses.

Insofla I have had stool test for infection and parasites all good apart from occulant blood :/. Don't think it's food poisoning otherwise its been going on for 7 months now because that's how long I have had symptoms for.

Garylouisevillie I have reported all of this to the drs but keep being told because my crp levels are not raised and I'm not loosing weight or have diarreha that its not my uc.

Pluto I had a colonoscopy last September with biopsies and all was normal at that time as I had just been treat with high doses of steroids and pentasa and imuran. Because of the results they said I was in remission and reduced meds and now I am getting sicker.

Azyooper I don't take fibre supplements coz they have told me not too :/ last April when I was admitted to hospital I was told it was fulimant colitis and on the verge of toxic. But normally I have left side uc 50 cm.. BUT with a patch past that point which they said was odd as that doesn't normally happen with uc.

Gingernut thank you for the reassuring words that crp levels don't have to rise for you to be in a uc flare. I am starting to hear that more and more. but try telling a dr that. They just don't seem to listen.
Embersglow1 I am not taking any probiotics as they are making me go to the toilet more and feel urgency so I was told not to take them at present.

Notsosicklygirl I should have said that I was diagnosed in 2000 with left sided colitis but they are now telling me I have ibs on top of uc.
So every time I go to the dr they are saying its ibs and not uc causing my symptoms. They told me that I recovered to quickly from my uc flare in April last year when they did a scope and biopsies in the September and found no sign.. But isn't that the point of meds to control the symptoms that gave my body 5 months to heal with the meds but they told me it was ibs coz I recover too quickly from such a bad uc flare.

Lildidge and dude35 I worry all the time that I have something more that they are missing and that if they don't look to see what's happening I will get to a stage where something major happens and I will be in big trouble..

Imagardener2 the drs told me not to take fibre for some reason and no I haven't tried psyllium powder. Is that something you can get at supermarket or do you have to go to the chemist for that?
I try to eat really well and have do eat by the low fodmaps diet when I feel I am in a flare. I don't eat deep fried food, fast food, alcohol or soft drink.

I have been to another dr today who has put me on an antibiotic and prednisolone again. He said I may have an infection because of the chills and feeling hot but he said I need to see my gastro dr and them do another scope.. So I have an appointment next Friday 4 April so I hope I can get some answers then.
Thank you all for your replies it has given me some comfort :)
Posted 3/28/2014 6:19 AM (GMT 0)
If doctors wont listen... move on to another one.
my first 2 doctors with this disease were terrible. But my current GI actually listens to me. And we come up with stuff together.
its nice to be heard.

Still sounds to me like an infection. The temp thing with the chills.

Are you getting scoped on the 4th or just have an appt?
Getting in there and seeing whats going on seems most important at this point. Living with the symptoms you are is NOT okay and doctors need to listen.

Psyllium powder is basically metemucil... the ingredient in it. Fiber has always been a no go for me... but may help in your situation. Id do some research online.

Hope they start listening... or you'll have to talk louder ;)
Posted 3/28/2014 11:21 AM (GMT 0)
Hi embersglow1 I only have an appointment on the 4 April no scope yet. Will give the Metamucil a go and get back to you :)
I've started to take my partner with me now when I go to the appointments so they carnt ignore me :)
Posted 3/28/2014 12:09 PM (GMT 0)
It's quite common for those of us who have had IBD for years to develop some degree of IBS also. Several people here have, and my GI says he sees it often. I'm guessing that the constant inflammation causes it, although I haven't seen any studies.

You sort of have to work out what works for you. For my IBD, diet never made a bit of difference. With the IBS I have to be a bit cautious about the amount of insoluble fiber I eat. Like most things with this DD, it's pretty individual.
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