Crohn's Disease Forum » Your Story » I think I may have Crohn's. It's been a long road.

03-29-2013, 10:14 AM   #1
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I think I may have Crohn's. It's been a long road.

Hi, my name is Emma. I just turned 30 and live in Australia.
I have been sick on and off for about 7 years. It was always one thing after the other, surgeries, strong meds, constant pain and being able to do nothing.
One thing that has always been the same is my stomach pain, not matter what problem the doctors found.
I had an "episode" of what the doctor said was IBS when I was about 16 and have been told off and on that that is what my pain was.
I have had problems on and off since then but it has gradually gotten worse over the years, particularly the last 6 months.
I had heard of Crohn's and what it was but for some reason yesterday I came across something about it online and certain symptoms I didnt know were associated with it. Symptoms that I have begun having in the last few months.
The symptoms I have had for years are;
-Severe contraction like stomach cramps.
-Bloating, stomach gets very big and very hard.
-Severe lower back pain, mostly in the tail bone, sometimes radiates down . legs.
-Very frequent bowel movements, constipation and diarrhea.
**I had a hysterectomy 2 years ago so I know its defiantly not uterine cramps.(that's another story lol)

About a year ago I started developing these crater like sores that take forever to heal and are quite painful, They have gotten a lot worse in the last few months.
**I saw photos of people with Crohn's having these exact same sores.

I began having bad pain in my right hip, was checked for arthritis but was told tests were normal.

-The last few months I have stared getting severe pain in my hands, wrists, ankles and feet. I am sometimes unable to use my hands and walking is difficult and painful.
**I've now read that arthritis can be a symptom/another problem when you have Crohn's.

The right hip pain has gotten worse, my thighs ache terribly and it feels like the pain is sometimes in my actual legs bones.
Sharp stabbing pain in my lower right adbo has also become more frequent.
I occasional get acute flank pain where it takes my breath away.

I had acute tonsilitis that landed me in hospital a few months ago. I got it twice more in the following months and also have a severe sinus infection that has hung around for about 6 months. (low immune system?)
I bruise extreamly easily and my legs are constantly black and blue.
If I cut myself shaving for example, I bleed like ive cut a vein and it takes ages to stop.
Also a fever on and off for the last few months. Sometimes it takes ages to go down, even with pain relief.
I am always tired even after doing nothing. I slept for 22 hours the other day and still felt fatigued.

I have had CT scan, x-rays etc in the past but doctors where never looking for this, it has never been mentioned before.
I will be seeing a doctor next week and asking for tests and a referral to a gastroenterolist.
It may seem silly, but after all the years I have been sick, all the surgeries and in and out of hospitals, seeing doctor after doctor and getting no definite answer for my ONGOING pain, it would be nice to have one answer so I can just deal with it and go from there.

Any insights, help and advice would be appreciated.
Thank you
03-29-2013, 10:49 AM   #2
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Hello Emma and welcome to the Forum.I have I don't want to advise you on whether or not you have Crohns.I will say though,that from what I've learned from the Forum,it sounds very much like it to me.When you go to your appointment take a list of ALL your symptoms,both past and present,and TELL the Doc. you want to be tested for Crohns.Some medics seem to be Quite ignorant of this dratted curse.The sooner you get a diagnoses the better.I'm sure someone will be on soon,who can help you.Chin up,and best wishes.
03-29-2013, 11:01 AM   #3
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Thank you for your rely. Im in a new town and will be seeing a new doctor so I will def go armed with a list of everything. My medical history is looooong lol
03-29-2013, 11:43 AM   #4
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Location: Charleston, West Virginia

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Welcome to the forum, Emma!

Do you have an appointment to discuss your concerns? Hopefully they can get you in quickly.

I hope things get better for you soon. I know what you mean about a diagnosis being a relief - once you know what's causing your problems, you can start to treat it.

Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

03-29-2013, 11:50 AM   #5
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I will be making an appointment tuesday as we have easter long weekend here at the moment. I will be able to get straight in. Fingers crossed i get a good doctor first go
03-29-2013, 02:32 PM   #6
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Location: Middlesbrough

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Welcome to forum.
Acid Reflux for 15 years med

Sacroiliitis and add to grew list auto immune diseases.

Now on Lansprazole 15 mg And Gavin son 5mg-10mg 3a day.

Crohns from Oct 2007
Domperidone 10 mg -20 mg, Mebeverine 135 mg,
3 a day.
Balsalazide 750 mg 3 X3 a day on going.
Bone protection.

Azathioprine is not working, still waiting to find out what next. Still on low dosage Prednisolone

Mesalamine Enema

No Wheat

English my native language and have characterizes of dyslexia.
03-30-2013, 12:53 PM   #7
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04-04-2013, 11:22 AM   #8
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04-04-2013, 11:44 AM   #9
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Hello Emma,

Crohn's and IBS, they are both very similar so some doctors sometimes mistakenly diagnose people with IBS instead of Crohn's. You might want to get a second opinion because there are specific medicine for both.

Oh, when you take immune-suppressant drugs like remicade, 6mp, metho, etc... these medicine makes your immune system not to work properly so any cold, infection, or disease might attack your body so be careful for several days after taking it. I got pink-eye after I got my remicade treatment last week. :[ I think someone in the hospital had it or the nurse had it and they touched my hand and I touched my eye or something.

Oh, and taking steroids like Prednisone really hurts our bones. For some people it hurts their joints or for some it hurts to walk or for some their bones get fragile and fractures are common.

If you are still having lots of pain talk to your doctor about sending you to a pain specialist. They will work with you on what works or not; just be honest with them.

I had Crohn's since I was a little child. The pain sucks. I always had pain in the mornings, or after meals, or at night when I can't sleep. Most of the time I realized it the food I was eating that made me have these pains. So go to the diet section of the forum and look for a diet you can try. Figure out what works and dont- write them down on a notebook.

What meds are you on now? I think I took every medication there is for Crohn's/IBS and had every surgery and complication there is. lol but It's ok now so I am happy.


Healthy meals
Stress-free environment
Positive mindset
Take pain meds only when needed

All these things will help I promise :]

God bless.

Current Meds:
-Asacol 400mg 2/day.
-Remicade 500mg 8weeks(IV).

My Crohn's Story:

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04-04-2013, 12:01 PM   #10
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One thing I would advise is to have your blood work done and get your Vit D and B12 and other levels checked, as I had similar pain symptoms in my joints/limbs long before I was diagnosed with Crohn's, and I believe taking supplements took those symptoms away.
04-04-2013, 06:54 PM   #11
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Thank you for the last 2 replies
I am currently taking over the counter pain meds (panadol and codeine) A while ago when the doctor thought my hip pain was maybe osteo arthritis he gave me prednisolone. It really helped then so i gave in and have taken some the last 2 days. It helped a little.
Having had these pain off and on for years I haven't had constant pain for more than about 2 days at a time. The last week i have been stuck in bed, the pain never goes away completely (like I've been punched in the gut) and I have had many acute episodes of pain in my lower right abdo and right hip (the drop you to your knees type pain and instant tears.) It's like I can literally feel gas/stools/whatever passing through that part. The pain has been more constant in the middle of my lower belly as well. I sometimes get a little pain there but not this much.
I have had many gynecological problems in the past and numerous surgeries on my pelvic area so I have lot's of scar tissue, so whenever this type of pain im having now would appear, doctors always sent me to a gyno.
I have a doctors appointment this arvo, I have only seen him once before as I'm in a new town but he seemed really good and thorough.
I will really push for a GI referral.
Are there any other questions or things I should talk to him/as him about that will help?
04-06-2013, 12:44 AM   #12
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Doctor looked at me weird when I mentioned Crohn's. He said but with Crohn's you have bleeding and bad diarrhea, do you have those GI symptoms. I said I dont have noticeable blood but often black stools and I have D from time to time for a few days at a time.
He examined me, said he doesn't suspect appendicitis as I have no fever and that my belly is very active/overactive.
Due to my many pelvic surgeries he is thinking it's just adhesions and something that can't be fixed so looking at a lifetime of just pain management.
He gave me some stronger painkillers and 2 x antibiotics just to see if they help at all.
Needless to say, I left there feeling pretty upset.
I had severe pain after a bowel moveemnt this morning. Its started at the anus and was like it went up inside me?
04-06-2013, 05:43 AM   #13
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Location: United Kingdom
Hi there I too was originally diagnosed with diverticulitis. I have been prone to throat infections too. Diagnosed with M.E. years ago,fatigue and balance problem. It came to a head 3 years ago. Sev ere tummy pain. A clever consultant asked for a pill cam in investigation and Crohns diagnosed We are all indi viduals and need to trust a good and caring doctor to look after us..I hope it turns out to be I.B.S or similar as Crohns is very fickle to treat. Watch what foods triggers it off and avoid! Do not get too anxious as that will make you feel worse. They can tell a lot from your blood. I hope all goes well for you.It is a very emotional and tiring time when you have frequent hospital visits and tests!!! Best wishes.
04-06-2013, 06:50 AM   #14
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I am also in Australia my dx is IBS but my daughter has Crohn's. Try and get the gp to do a general health check with the following blood tests full blood, iron studies, B12, folate and Vitamin D.

See if you can get a faecal calprotectin ordered, this test is not covered by Medicare so get quotes.
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-06-2013, 06:51 AM   #15
Join Date: Dec 2012
Hi Emma,

I'm in Australia too and waiting for a diagnosis myself (tests done, gastro on Easter holidays!). Whilst I can't tell you if it's Crohn's or not, what I can suggest is that you either go back to your GP, or try a different one. This time go armed with the name of the gastro you want to be referred to, as well as the tests you want done (I discovered that in my part of Aus, it takes only a week or two to get a gastro to perform a procedure, but two months for a consult - so you may get faster results by asking for a referral for a procedure).

If at all possible, take a support person who will advocate for you - partner, sister, friend, whatever. It is very difficult for a GP to say no to a reasonable request for a referral, particularly with a support person there.

Do some research - this is a great site - and there are others - if it's dominantly lower right abdomen pain there's a good chance whatever your problem is its in the terminal ileum - so a pill cam or barium swallow (or the new flash version - ct enterography) are the go. These are expensive, so in Aus they will want to do a gastroscopy and colonoscopy first. These might be quite useful and certainly are a foot in the door, so to speak!

Whilst I'm new to the possibility of crohns, I've been through the chronic disease diagnosis path before, and whilst I realise it seems almost insurmountable to do all this research and be so assertive when you feel lousy and exhausted 24/7, it really is essential. The support person makes an enormous difference, and I'd really encourage you to try this strategy.

Good luck getting a better diagnosis than antibiotics and stronger painkillers

PS. You didn't mention what your earlier surgeries were, but just putting it out there that in rare cases endometriosis can actually manifest as uterine tissue that infiltrates the bowel.... Not sure if that is possible after a hysterectomy.
04-06-2013, 08:16 AM   #16
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My previous surgeries on my pelvis that would have caused the problem adhesions are 3 x c-sections, opening me right up along same scar to remove ovarian cyst o left ovary and a partial hysterectomy (only uterus removed) and at the same time an ovarian cyst off the right ovary that was found during surgery.
I had had the pains on and of for years but 2 weeks after my hysterectomy, June 2011, the pain got a lot worse and began radiating into the right hip as well. It has become more frequent and more sever as time goes on, particularly the last 6 months. And the pain has been constant the last week and a half, it varies in severity but even with the stronger pain meds I have not been able to get it to completely go away.
I am new to the town I am in so I have only seen this current doctor twice. I also have no family or anyone for support atm.

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