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Hi, I'm Lizzie. Please advise I feel so ill and alone!

Hello everyone,

My name is Lizzie, 29 from London. I'm so happy I've stumbled accross this site after my horrific ordeal has left the doctors contradicting their own diagnosis!

Basically, mid July I was hospitalised with severe stomach cramps (sounds like an intestinal blockage). The pain came in waves and I couldn't go to the bathroom for about 5 days. According to the doctor who first suggested Crohn's, constipation isn't symptom of Crohn's.
After some pretty horrific pain that made me pass out at times, the waves would go when it felt like the pressure on my intestines moves and let out a loud grumble. After a course of lactilose, the usual few days of diarrheah would occur until the blockage cycle would happen again. I was on morphine on demand and the pains would creep from a 1-10 within 15 mins every 3-4 hours until I took morphine. And especially after food!
I was kept in for 8 days whilst they diagnosed me with Crohn's, undiagnosed me, looked into appendicitis, ruled out appendicitis, said I may have IBS, ruled out IBS, suggested Ulcerative
Colitis, did an MRI, found nothing, did a colonoscopy and found ulcers around the ileum, and have now left me in limbo!
I recently went back to my GP as the pain was building again. She was happy to give me some suppositories, and also thought enough evidence was found to put me on Crohn's meds. I'm still awaiting results from a specialist to confirm this.

In the meantime, I'm now back in bed with a very bad kidney infection and cystitis. I get cystitis attacks 3-6 times per year but have had 2 in the past month alone! Does anyone else find they get urine/kidney infections? Or regular cysitis? Apparently the blood, protein and white blood cells were very obvious this time and my whole back has swollen where my kidneys are.

Basically,I'm just looking for anyone who's had any of the symptoms I've had, maybe you can help me with a probable diagnosis as the gastro specialist is taking a while to get back to me.

Today, as well as my kidneys being bad and painful I also had a bout of dihoreha after about 4 days of constipation.

Please give ANY help/advise/comments as i feel completely on my own, incredibly unattractive and feels so sad for being constantly ill.
Desperately,
Lizzie xx
 

DJW

Forum Monitor
Hi Lizzie and welcome.
My you are really going through it. Totally understandable to feel like you do.
I'm baffled they would say crohns then not crohns then IBS. A diagnosis should not consist of throwing darts at a board. I've had many blockages and know how incredibly painful the can be. While constipation isn't typical their are people who have it.

Have you had a colonoscopy with biopsies?

Crohns is very common in the terminal ileum. This can be seen with a scope.

Sending you my support. You are not alone.
 
Hi Lizzie. Welcome to the forum. I am sorry you are having such hard time. I hope your GI can see you soon. If you are having pain please go back to the E.R. Sending hugs and support.
 
Oh thanks both of you for replying.
I was in a bit of a dark place yesterday as I'm self employed and have only been able to do odd days of work since July.

So yes! They did the colonoscopy and took biopsies. I'm waiting for them to come back. But he said at the time that I have an ulcer on the ileum, I have a picture of this too.
My appointment with the consultant is early October. This whole process has been extremely slow! I've had to chase and argue for scans when I was really ill, and the general doctor was saying my MRI was completely clear so I'm a bit of a medical mystery. He wanted to send me home, but the gastro consultant thought it was worth while doing a colonoscopy, and aonce I was throwing up with the pain a camera down the throat too.

The only thing they found was the ulcer, they took biopsies of other parts of my colon too, but now I've been discharged from hospital and left in limbo.

My family is just sad for me, and feel a bit helpless. They live in the north of England and I live in the south and I know nobody who's ever delt with Crohn's.

I'm aware that it's nutoriously difficult to diagnose, but also feel that I'm being massively fobbed off with bits of what it could be and then because they're unsure IBS!

When I first went into the hospital, it was an A&E (accident and emergency) doctor who told me it looked like Crohn's. My inflammation in my blood was very high, that's the only thing that they could find accept my blood pressure being high too. The pain was just so intense too, but the nurse that was monitoring got quite angry because I was saying it was a 10/10 for pain and 30 seconds later it could be down to a 4/10. It was almost as though she thought I was lying. I genuiely thought I was either having a baby or something inside was erupting.

So, since leaving the hospital (exactly one month ago) I've had about three incidents where my stomach went into body doubling cramps. One was when I was walking around town. I go pale white and the pain goes from my lower stomach (belly button region) to my back and sides. After sitting and eating some bread it calmed down and I just had stabs for the rest of the day.

Does any of this ring true with anyone? I've also been put on mezalazine tablets 3 times a day. Although my GP is just trying to be helpful until some sort of diagnosis comes.

Please if anyone has any of this or knows what it could be let me know.

Thanks so much in advance, and I hope I've answered some of your questions too xxx
 
Crohn's sure sound probable especially with the ulceration around your illiuem, and your high inflammation blood levels, combined with what sounds like a small bowel obstruction from when you couldn't go to the bathroom and had horrific cramping which sent you to the hospital. People with crohn's can have both constipation or diarrhea although I think diarrhea is more common. Certainly if the bowel is obstructed due to inflammation or stricturing it will look like constipation. If you don't get a Crohn's diagnosis, ask them to explain what else could cause ulceration around the illium.
 
If you take Advil/nurofen often tht can actually cause ulceration around the ileum.. Be patient try not to worry, I know it's easier said than done. Don't be shy to call your specialist and keep hassling for results though. And as mentioned above if your symptoms feel really bad go to the ER. But the main thing is you are not alone and whatever comes you'll get through it so try not to stress. Bless you
 
Yes, Thankyou. I'll definitely ask the speciaist to explain the ulcer if I start to feel like I'm being put back on the shelf again.
I've just been so ashamed over the past year, I've had dihoreha after a lot of certain meals, been in severe pain and had to leave my friends without explanation. I've had brittle bones since I was about 8 years old, reoccurring migraines 4-5 times a week at the worst stages. I have to sometimes have afternoon naps, or go back to sleep a couple of hours after I wake up. I've even fallen asleep at work which is quite dangerous as I look after kids!! And of course there's the ever reoccurring cystitis/kidney infections.
My issue is I just don't know what symptoms relate to people with Crohn's and what sympoms are just me being susceptible to infection and illness.

I'm not very sure what Advil is so I don't think I've had that. I've taken nurofen in the past, but probably consumed 3-4 boxes in my life. I take a lot of paracetamol, and I've had a hell of a lot of antibiotics in my life having had a lot of tonsillitis and infections as a kid. I'm talking 7-10 courses a year from the ages of about 8-17. I've become immune to a lot of antibiotics now which I'm pretty scared about as infections seem to get more debilitating each time and harder to combat.

In the meantime I'd like to offer you lovely people something. I've just come across a site called 'deliciously Ella'. She makes incredible food for people with immune and bowel conditions. Maybe helpful for some? The breakfast smoothie looks amazing! Xxx
 
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