Crohn's Disease Forum » Support Forum » Undiagnosed Club » Still having problems

10-18-2011, 06:39 AM   #1
Join Date: Apr 2010
still having problems

Please forgive me for posting again, I seem to come and go. I also dont feel like I should be posting because so many doctors have told me I have IBS, which for some reason I dont believe completelty.

So my problems have been going on for over 2 years, but have much improved over the last year after cutting out gluten and lactose.

However I still have times where Im having lots of bowel movements, sometimes formed, sometimes not, feeling really tired and feeling sick.

About 3-4 months back I saw a doctor (I also had pain low down, near the pubic area and above that). I was told that all that is there is my intestines. That I have IBS and just have to get on with it eg change diet and maybe take something to bulk my motions. Well I go through times of just having 1-2 bowel movements a day and didnt want to chance getting blocked up.

After about 2 months I saw another gp who seems to be taking me seriously, she was concerned I had damaged my stomach lining (took too many tablets a few years back) so prescribed me a proton pump inhibitor for a month. I noticed an improvement, we then had a break and Ive just completed another months course.

In the last 4 weeks Ive been going to the toilet upto 6 times a day. Ive also had a really sore bum, it burns/stings if anything touches it, it itches etc.

Plucked up the courage to see the doctor again, she examined me and said my bum is very inflammed and I have a small pile. Which shocked me quite a bit, with me being 26 years old. Have been given some ointment with steriod in to help the inflammation. She wants to book another appointment to discuss my stomach issues. She didnt mention what could be causing the inflammation. Also in the past two weeks Ive had the pain again low down to the left. Also feels tender to touch.

Im just so confused, obviously it concerns me because my mum had crohns (well she was really bad with it when I was young and had an operation to remove some of her bowl and touch wood she has been ok since).

I just hate going back to the doctors and being told its IBS.

Sorry to moan, for the last year or so Ive been so routine with my meals eg eating at a certain time for fear of feeling sick, it controls me so much.
10-18-2011, 07:23 AM   #2
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Cat-a-Tonic's Avatar
Join Date: May 2010
Location: Madison, Wisconsin

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Smile, you don't need to apologize for posting again! I'm sorry to hear that you're still having issues and still not properly diagnosed. If there's inflammation, then it's definitely not IBS. IBS doesn't cause inflammation, but IBD like Crohn's & colitis do. It sounds like your doctor is looking into other things besides IBS, and I hope your next appointment goes well. Do you know if your doctor is planning on running any more tests?

It sounds like you've got a family history of IBD so I wouldn't be surprised if you've got Crohn's or colitis too. Especially since you've got inflammation. Don't give up looking for answers, you deserve to know what's really going on in your body so that you can treat it effectively and keep it from getting worse. Good luck and please keep us posted on how you're doing and what the doctor says!
10-18-2011, 07:26 AM   #3
Senior Member
Join Date: Oct 2010
hiya, moan away!!! have you had any other investigations yet? what about blood tests or colonoscopy? I think IBS should only be diagnosed once everything else has been ruled out. Do you have any gynae issues as apart from you intestines you also have all those parts to consider. I think you need to go back to the doc and request some tests especially as crohns runs in the family.

Diagnosed Crohn's 2010
ileocecal resection 2010
Meds: Nil and in remission

10-21-2011, 01:05 AM   #4
Join Date: Apr 2010
thanks for the replies, I appreciate it.

Over a year ago I had a colonoscopy, where they found mucosal erythema in the terminal ilieum (which Ive been told suggests inflammation). On the discharge summary, it was just said it was of unknown significance. I also had a bairum meal test, which they said was normal.

My GP didnt say what could be causing the inflammation (on my bottom), but she does actually seem to be taking this seriously, eg by not giving me medication until she finds out what is going on. She has said a few times she is keen on sending me for some tests.

This past few days have been rough Ive felt so sick, yesterday for about an hour or two after eating lunch I felt sick, even my normal over the counter medication for upset stomach didnt help.

My bottom is still sore and itchy, have started with the steroid cream Ive been given so will see how that goes. Im also finding myself in bed a lot during the day. I probably get around 9-10 hours a night, then sleep more during the day.

Ive yet to mention to my current GP about my mums history of Crohn's but will definately bring it up with her the next time we meet.
10-21-2011, 07:00 AM   #5
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littlemissh's Avatar
Join Date: Dec 2010
Location: United Kingdom

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Inflammation around the bottom area (perianal area) can be simply caused by having too many bm's and the bm's chemically burn the area...this is skin inflammation NOT gi inflammation and is very common and not a sign of underlying disease. Some with IBD can get fistulas in this area but you would see openings/little holes etc not 'just' inflammation.
Hopefully the steroid creams will help. If you are still having lots of bm's, try using a barrier cream just before going to protect the sore bits.
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.

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