A similar diagnosis story? Feeling defeated

[smada15]

:sign0085:

Hello All,

I need to say that this is my first time posting here, but I have reached out by reading other's messages for the last year now, and I want to thank you all for offering that support to people you don't even realise are looking for it.

I hope I can do the same to others like me one day.

I just signed up because I feel I have no where left to go and I'm very much defeated. I would love to know any similar stories from people who had a hard time being diagnosed, or better yet, slap me silly and tell me it's not crohns? I just don't know.

I will try to keep my story as brief as possible! Though it's quite convoluted...

I'm 27 years old now, if that adds anything to the story.

I started seeing a gastroenterologist a year ago, December 2016 because I had enough. I work full-time and study part time and I am a huge perfectionist with my work and my grades. It wasn't until I received my first crappy (to me) mark purely for lack of attendance (from being sick so much) that I finally listened to people around me and went off to the specialist.

I had been experiencing nausea as my main symptom for the previous year (two years now). Nausea and fatigue. But there are certainly mixes of bowel issues - constipation mixed with diarrhea, and there have been times of excruciating pain. Though I stand by nausea and fatigue being my number one enemy. From mid 2015 - mid 2016, it was bad, probably about 50% of the time I had nausea, bloating, fatigue, general aches and malaise. I kept thinking 'I must be getting the flu', or 'I must have this, or that', every time the SAME symptoms came. I remember skipping a lot of meals, sitting at work watching everyone eat their lunches.
I also lost up to 10kgs in this time and just thought it was because I'd tried to be healthier but looking back... I think it was all the missed meals.

Since mid 2016 I have had these same symptoms, but about 90% of the time. I'm probably "well" a collection of one week out of every month. But by well I mean not too nauseas and good enough to function fully with what I have to do.

My colonoscopy and endoscopy in December 2016 found inflammation and ulceration in my terminal ileum, and inflammation in my stomach and duodenum.
We took the terminal ileum and ran with it, but no one ever mentioned the stomach and duodenum until my GP last week! A year later! My grandpa actually died from sickness because of severe inflammation and ulceration of his duodenum when treatment was a lot less like it is today...

Anyway, I was tested for bacteria-induced illness, stool samples, breathe test, and went on a treatment of antibiotics and nothing was found or changed.
I did the gene test for celiac and nothing was found.
I was on a treatment of Pentasa for a while and all that happened was an increase in diarrhea and discomfort.
I then went on to Entocort (cortocosteroids) and MY GOD!!! After a week or two, I felt better than I had felt in the past two years!!
I didn't feel sick AT ALL. I had normal bowel movements. I didn't just go to work and study but I went out to socialise and so much energy. My anemia disappeared too and my GI was thrilled!
I then reduced my dosage and within a few weeks to a month it was coming back...
My GI then said to try them again if I'm still sick after another week and if they help then we will need to look into immunosuppressants for long-term. Well I was still sick... so I tried them again.
This was the closest I had come to a confirmation of a diagnosis. Now I wasn't thrilled with crohns but two years of nothing from no one... it was a relief! Medication could help me!

However, at the same appointment my GI still wasn't happy with the nausea being the main symptom of crohns, so he sent me for one more test - my gallbladder functioning.
And my HIDA scan found it was functioning severely low - 2% ejection fraction.
So my GI was thrilled - he said get that removed, and you should be good to go on your life, go do your work etc, and have a routine colonoscopy in 12 months. He sent me to a different surgeon and that was that.

Gallbladder is now gone, it's been 2 months off the steroids, and I have lost a further 5kgs. I have been weak the entire time since surgery, but I was patient expecting it to be post-surgery recovery. Well I am now too sick to eat anything, I'm so nauseated with pain after eating, few bowel movements but any I do a runny and painful in my anus. My mental health is not okay because I left work early everyday this past week, and I'm trying to write a final major research paper this weekend and I just can't. I'm sick and in pain but my body is probably hungry.

I am also on weekly b12 injections as my active b12 was seriously low about a month ago.

But I have this weird sense of nerves going back to my GI who thought I would be cured because I feel like - am I stupid and is this so not crohns and what the hell is wrong with me?

I'm sorry... I really tried to keep it brief

 

[Jabee]

I think you need to be treated for the inflammation they found in your terminal ileum and stomach/duodenum. I’m confused as to why your GI thought removing your gallbladder would get rid of the inflammation. I have small bowel crohn’s and nausea is one of my main symptoms (along with constipation). If Entocort helped you so much there is no reason to conclude that you simply had a gallbladder problem. Did your GI not think you have crohn’s? And did he give you any indication about what he thought was causing the inflammation? If you can I would see someone new, but it might be worth it to see your original GI since he has all your records. You definitely need some sort of treatment.

 

[smada15]

Hi Jabee,

Thank you for replying!

It helps to hear that your main symptoms are the same as mine!

The main reason I kept being told that he could not confidently settle on a crohns diagnosis is that nausea didn't line up with where the ulcer and inflammation was found in my terminal ileum. And that the biopsies didn't confirm anything.
Then of course he was excited when they found my gallbladder wasn't functioning and he thought that must be the cause for the nausea.

However the GB is gone and the symptoms are the same now, if not stronger.

As for the stomach and duodenum inflammation, I was never even told that existed until last week, when my GP had a look at my history. And that was from my endoscopy a year ago now. I think I need to bring that up when I see him. I've decided I'll go back to him first and not put it off...

 

[Squirrel#1]

:sign0085:

Hello All,

I need to say that this is my first time posting here, but I have reached out by reading other's messages for the last year now, and I want to thank you all for offering that support to people you don't even realise are looking for it.

I hope I can do the same to others like me one day.

I just signed up because I feel I have no where left to go and I'm very much defeated. I would love to know any similar stories from people who had a hard time being diagnosed, or better yet, slap me silly and tell me it's not crohns? I just don't know.

I will try to keep my story as brief as possible! Though it's quite convoluted...

I'm 27 years old now, if that adds anything to the story.

I started seeing a gastroenterologist a year ago, December 2016 because I had enough. I work full-time and study part time and I am a huge perfectionist with my work and my grades. It wasn't until I received my first crappy (to me) mark purely for lack of attendance (from being sick so much) that I finally listened to people around me and went off to the specialist.

I had been experiencing nausea as my main symptom for the previous year (two years now). Nausea and fatigue. But there are certainly mixes of bowel issues - constipation mixed with diarrhea, and there have been times of excruciating pain. Though I stand by nausea and fatigue being my number one enemy. From mid 2015 - mid 2016, it was bad, probably about 50% of the time I had nausea, bloating, fatigue, general aches and malaise. I kept thinking 'I must be getting the flu', or 'I must have this, or that', every time the SAME symptoms came. I remember skipping a lot of meals, sitting at work watching everyone eat their lunches.
I also lost up to 10kgs in this time and just thought it was because I'd tried to be healthier but looking back... I think it was all the missed meals.

Since mid 2016 I have had these same symptoms, but about 90% of the time. I'm probably "well" a collection of one week out of every month. But by well I mean not too nauseas and good enough to function fully with what I have to do.

My colonoscopy and endoscopy in December 2016 found inflammation and ulceration in my terminal ileum, and inflammation in my stomach and duodenum.
We took the terminal ileum and ran with it, but no one ever mentioned the stomach and duodenum until my GP last week! A year later! My grandpa actually died from sickness because of severe inflammation and ulceration of his duodenum when treatment was a lot less like it is today...

Anyway, I was tested for bacteria-induced illness, stool samples, breathe test, and went on a treatment of antibiotics and nothing was found or changed.
I did the gene test for celiac and nothing was found.
I was on a treatment of Pentasa for a while and all that happened was an increase in diarrhea and discomfort.
I then went on to Entocort (cortocosteroids) and MY GOD!!! After a week or two, I felt better than I had felt in the past two years!!
I didn't feel sick AT ALL. I had normal bowel movements. I didn't just go to work and study but I went out to socialise and so much energy. My anemia disappeared too and my GI was thrilled!
I then reduced my dosage and within a few weeks to a month it was coming back...
My GI then said to try them again if I'm still sick after another week and if they help then we will need to look into immunosuppressants for long-term. Well I was still sick... so I tried them again.
This was the closest I had come to a confirmation of a diagnosis. Now I wasn't thrilled with crohns but two years of nothing from no one... it was a relief! Medication could help me!

However, at the same appointment my GI still wasn't happy with the nausea being the main symptom of crohns, so he sent me for one more test - my gallbladder functioning.
And my HIDA scan found it was functioning severely low - 2% ejection fraction.
So my GI was thrilled - he said get that removed, and you should be good to go on your life, go do your work etc, and have a routine colonoscopy in 12 months. He sent me to a different surgeon and that was that.

Gallbladder is now gone, it's been 2 months off the steroids, and I have lost a further 5kgs. I have been weak the entire time since surgery, but I was patient expecting it to be post-surgery recovery. Well I am now too sick to eat anything, I'm so nauseated with pain after eating, few bowel movements but any I do a runny and painful in my anus. My mental health is not okay because I left work early everyday this past week, and I'm trying to write a final major research paper this weekend and I just can't. I'm sick and in pain but my body is probably hungry.

I am also on weekly b12 injections as my active b12 was seriously low about a month ago.

But I have this weird sense of nerves going back to my GI who thought I would be cured because I feel like - am I stupid and is this so not crohns and what the hell is wrong with me?

I'm sorry... I really tried to keep it brief

I would seek another opinion. He should have given you Zolfrom for the nausea. You need to check your vitamin D levels also. Sit out in the sun or go tan for 10 minutes a day. My vitamin D levels were low and tanning is only way to keep them regulated. I go 3x week. I take probiotics. I've been told for nausea to drink ginger infused tea. I would definitely get a second opinion.

 

[ronroush7]

I also think you should seek another opinion.

 

[smada15]

I would seek another opinion. He should have given you Zolfrom for the nausea. You need to check your vitamin D levels also. Sit out in the sun or go tan for 10 minutes a day. My vitamin D levels were low and tanning is only way to keep them regulated. I go 3x week. I take probiotics. I've been told for nausea to drink ginger infused tea. I would definitely get a second opinion.

Hi, thanks for your response!

In regards to nausea, did you mean Zofran? I have been taking them around the clock lately, to start the day, during the day and before bed so I can sleep and hope to wake up a bit better!
But I never got that from my GI it was actually from my gallbladder surgeon and now the GP!

My vitamin D levels were completely normal last test, it was just the b12 that has dropped significantly in the past couple of months.

I will definitely be going back! And if I’m not happy with his response than I will definitely get a second opinion.

Thanks heaps for your help

 

[Jabee]

I think B-12 is absorbed primarily in the latter part of the ileum, one of the places where you have inflammation. The inflammation could definitely lead to a B-12 deficiency. Has your GP expressed an opinion about crohn’s?

 

[smada15]

Hi Jabee

I could tell my GP didn't want to dismiss what my GI had said or decided on. She even said it'd be best to go back to him for now instead of a second one as he has all my history.

But in my latest appointments for my b12 injections when I've rocked up sick, she said she wasn't surprised the gallbladder removal did nothing, she thinks crohns hasn't been confirmed because of the biopsies saying nothing mostly, and last week she said she recommends me going back onto the Entocort before I even go back to my GI, and isn't sure why I was taken off it.

All a bit of mixed info I think!

 

[cmack]

I think B-12 is absorbed primarily in the latter part of the ileum, one of the places where you have inflammation. The inflammation could definitely lead to a B-12 deficiency. Has your GP expressed an opinion about crohn’s?

I believe this to be correct about the B-12 absorption being primarily in the latter part of the ileum. This is something you should mention to your GP when asking for another opinion, which is what I think you need to do.

 

[smada15]

Thanks cmack!

I’ve made an appointment to go back to my original GI first, and see where he goes with it. If I’m still not comfortable then I’ll ask for a second opinion. I’ve also restarted my Entocort in the meantime, praying it works like it did last time.
Unfortunately it’ll stuff up my low fodmap diet as I won’t know what worked!

 

[Jabee]

A minority of crohn’s patients have biopsies that show granulomas; the rest of us are diagnosed based on symptoms and visible inflammation. It both confuses and amazes me that many GIs still hold off on a diagnosis when biopsies don’t show granulomas. The same is true for so many other diseases; not everyone will have all the classic signs. I hope your GI will recognize that your inflammation and symptoms point to crohn’s.

 

[smada15]

Thanks Jabee, that actually really helped to hear.

I know that he was one visit away from putting me onto immunosuppressants because of how I didn't respond to Pentasa and how I responded really well to Entocort but then got sick whenever I stopped them.
But then between saying that and that one visit later he got my gallbladder checked and ta-da, ran with that...

He has said in the past that if it is Crohns, then it would be the early stages, which might be why biopsies haven't shown anything specific?
And in that case, wouldn't it be better to catch it early!!
Officially going back to him on 1st December.

Anyway, thanks Jabee, your input really helps

 

[Jabee]

This article should give you more information about granulomas and the diagnostic criteria for crohn’s. Most crohn’s patients don’t have granulomas so your GI should know that the absence of granulomas in the presence of all your other symptoms just means you don’t have granulomas. I think they are an indicator of more serious disease activity. Good luck with seeing the GI.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657987/

 

[smada15]

So I bumped my appointment forward to next week. I cracked it and am so close to losing all hope that I had to do it. I need a bloody answer or plan of some sort.
All I’ve had the past couple of weeks is people tell me how much weight I’ve lost and am losing. I couldn’t even stomach broth tonight. Too weak to walk up to my local shops anymore.
I live and work and push myself for my career, have since I was a bloody kid, and have had to turn down so many opportunities at work this last year because I’m too sick to start something new or get involved. Dropped marks for my uni degree. So depressing.
I don’t know how you’ve all lasted as long as you have.
I guess there’s no choice right?

You’re all so amazing and inspiring and so supportive. I’m not an online forum kind of person but I’m so glad I bit bullet and reached out. Hopefully I can help someone one day.

 

[cmack]

You are helping, if only by sharing your story, someone else may feel like they aren't alone. I'm a fairly good listener, feel free to talk to me any time.

 

[Deleted member 431298]

Hi smada15. I am sorry to hear you are having such a rough time.
Have you had a fecal calprotectin test done I wonder? It is often used to confirm IBD (80-90% chance you have it if it is elevated). You could ask your doctor on the next visit if he/she would consider that to maybe get a more firm diagnosis.
I hope you will feel better soon.

 

[David]

Hi there and welcome to the community. I'm so sorry to hear of your struggles. I hope you get more answers soon.

 

[smada15]

Thanks for the encouragement everyone!

So I had my appointment - still can't commit to crohns due to nausea being my core symptom. Tried to stress I literally have nothing left... my work is suffering, my study, my life outside of work... anyway you already know that.

So I've been referred to a new/second gastroenterologist for another set of eyes, and that's in two weeks time.
Two weeks doesn't sound like long but when you feel like this it bloody is.
So frustrated, defeated, getting ready to be told it's all in my head and see a psych instead!

 

[my little penguin]

Nausea can be caused by gastroparesis
You would need a gastric emptying test
Ds has Crohns AND gastroparesis
When he started getting bad nausea we assumed it was Crohns related
But that was fine spent months going round and round on why he should be fine

Finally a light bulb went off on what else could cause it (also looked quickly at GB)
GI did a gastric emptying scan and
Ds has a dx of gastroparesis associated with Crohns probably due to inflammation that has been present in his duodenum

There are two gastric emptying scans
One for liquid
One for solid
Ds liquid is normal
Solid scan was not

He now eats low fiber low fat tiny meals
And takes erythromycin to help his stomach empty

It does not get rid of the nausea completely but it does help

Hope you get into a good GI who is willing to help

Good luck

 

[Chiara94]

My story is very similar to yours. Severe nausea and fatigue as main symptoms and quite some weight loss during "flares" (ranging from 5-20 kgs), low iron, B12 and protein levels, but no diagnosis (yet). I had my first colonoscopy 3 years ago, during which they found some ulcers and inflammation in my colon and terminal ileum, as well as a stenosis of the terminal ileum. Biopsies showed only mild, aspecific inflammation, so I got referred to a surgeon to discuss the possiblity of a partial bowel resection. That scared the crap out of me, so I asked for a second opinion. There they repeated the colonoscopy and said everything looked perfectly normal... surprise, surprise. No stenosis, no inflammation. Although the report says there were some erosions in the terminal ileum (biopsies, again, showed mild inflammation and lymphoid hyperplasia), but I only found that out a few weeks ago.
Eventually I got diagnosed with delayed gastric emptying and over the last years I've tried to manage symptoms with zofran, erythromycin and dietary adjustments, but to no avail.

Now my GP thinks it could be Crohn's after all and I've been referred to a specialist. I'll be seeing him in three weeks and I couldn't agree with you more.. it doesn't sound too long, but it feels like ages when you're feeling this sick. I've had surgery on my leg a few months ago, which actually caused my most recent "flare" and the bone isn't healing at all, so that's an extra concern right now.

I really hope your second GI will try to get to the bottom of this! In the meantime, would it maybe be worth seeing a dietician? I'm using Ensure now and it helped slowing down the weight loss a little bit.

Good luck!

 

[smada15]

Hello All,

Not sure if anyone will still be interested but I feel I might provide an update.
Does anyone else just get sick of feeling angry at the damn thing and at delays in diagnosis?

So where I’m at - the week before Christmas I ended up in emergency sick, they ran basic blood tests, checked me out, got my history, spoke to their gastro team and fully believed it was a crohns flare. I kept saying “but it could just be a virus/flu?” But they were adamant it wasn’t. They released me under the proviso I go back into Entocort and see my doctor ASAP.

So I spent New Year’s Eve prepping for my second colonoscopy.

Surprise, surprise - everything looked fine. No signs of ulcers or inflammation. The terminal ileum ulcer had cleared up. It must be IBS.
I got given anti depressants (cymbalta) to alter the neurotransmitters telling my stomach to be sick and happy days. I was told it is definitely not crohns.

Three days later, after a horrid side affect of cynbalta which I will never touch again and warn anyone else not to - my doctor called me. “So stick to the current plan but...”
Turns out the biopsies showed inflammation throughout my colon.
My doctor says no, but the doctors report from the biopsies suggests “early inflammatory bowel disease”

Now since this day about 6 weeks ago - I’ve moved interstate, left my support network and doctors, moved into a new place and started a new very demanding job.
And today? I’m in bed sick - I’ve spent about 3 days out of every 7 for the past 3 or 5 weeks sick.
I’m losing my mind. I’m losing everything.
And to make matters worse the medical system in this state is terrible. 5 month wait to see a gastroenterologist despite having been seeing my regular one monthly.
I did manage to fight and eventually got an appointment for 15 March.

But seriously what the feck is wrong with me!

 

[ronroush7]

Hello All,

Not sure if anyone will still be interested but I feel I might provide an update.
Does anyone else just get sick of feeling angry at the damn thing and at delays in diagnosis?

So where I’m at - the week before Christmas I ended up in emergency sick, they ran basic blood tests, checked me out, got my history, spoke to their gastro team and fully believed it was a crohns flare. I kept saying “but it could just be a virus/flu?” But they were adamant it wasn’t. They released me under the proviso I go back into Entocort and see my doctor ASAP.

So I spent New Year’s Eve prepping for my second colonoscopy.

Surprise, surprise - everything looked fine. No signs of ulcers or inflammation. The terminal ileum ulcer had cleared up. It must be IBS.
I got given anti depressants (cymbalta) to alter the neurotransmitters telling my stomach to be sick and happy days. I was told it is definitely not crohns.

Three days later, after a horrid side affect of cynbalta which I will never touch again and warn anyone else not to - my doctor called me. “So stick to the current plan but...”
Turns out the biopsies showed inflammation throughout my colon.
My doctor says no, but the doctors report from the biopsies suggests “early inflammatory bowel disease”

Now since this day about 6 weeks ago - I’ve moved interstate, left my support network and doctors, moved into a new place and started a new very demanding job.
And today? I’m in bed sick - I’ve spent about 3 days out of every 7 for the past 3 or 5 weeks sick.
I’m losing my mind. I’m losing everything.
And to make matters worse the medical system in this state is terrible. 5 month wait to see a gastroenterologist despite having been seeing my regular one monthly.
I did manage to fight and eventually got an appointment for 15 March.

But seriously what the feck is wrong with me!

I hope you get answers real quick.

 

[cmack]

We are still interested. That sounds like a lot going on right now, make sure to get rest. Sorry to hear of the troubles, you aren't alone regarding frustrations with delays. Best wishes with everything.

 

[DeeDee :)]

hi!
In the meantime, while you maybe get some other opinions from doctors (not all doctors are good doctors, of course, so you can always get another opinion) about your condition, think about this.

I feel that you may be not paying enough attention to the level of stress you experience in your life. I know that people mostly think that stress is a must, but if you stress too much and never release your mind, your body is too concentrated to produce a stress reaction in the body that after a while turns into bigger physical problems. Think about stressful times in life, and how maybe sometimes you ate too much, or couldn't eat at all. That's your stressed brain directly affecting your gut.
I can't tell you how because you know best what stresses you, but try to make time in the day to relax, get a chill hobby, literally whatever relaxes your mind. Maybe try to be more patient with yourself, not set the bar too high because it seems to only hurt you (I'm referring to you saying you're a perfectionist). Be gentle to yourself. Maybe read some books about digestion (I recommend "The microbiome solution" by Robynne Chutkan) to understand more about what goes on in the body because then you will know more about how to help it heal.
I encourage you to change your diet habits, if you haven't, too. You have to be careful to eat something that would be easy on both the digestive and urinary system, but I think that leaves a lot of awesome, healthy food. Maybe talk to a nutritionist doctor.

If you feel you're already fed with the life situation you're in, it means it's time for a change, it will come with time and not suddenly, but let yourself be open to changing everything that causes you anxiety in life, even if it is yourself telling you that you're a perfectionist and with that, giving yourself no room for making a mistake (it sounds stricter than a strict parent..).

Good luck and may you find peace

 

[cmack]

I agree regarding stress. Any activities you can do that would lower your stress level would certainly help.