Unclassified IBD after 40 years :0)

[Rev Rog]

Quick intro and history. Had my first endoscopy at 9 years of age to try and find out why I experienced such pain and reflux/vomiting after food. 40 years later and still unclassified. Had an 'open' Nissen Fundoplication in 1995, but just got worse after surgery. Got to my lowest in 2013 and just stopped eating, as I was needing up to 45 Loperamide per day as well as other meds. None of the countless A&E hospital stays for blocked/dialated/hernia/stricture episodes and dozen or more endoscopies and biopsies (over last 40 years) have revealed any diagnosis other than 'the worse case of IBS' that two gastro specialists had ever seen, and in their own words 'there is nothing more medical science can do for you'. In a last attempt, my private doctor agreed to trial me on 65mg daily Prednisone (July 2014). In three days all my symptoms stopped, and for the first time in my memory, I was pain free. The same two specialists have changed their 'diagnosis' from IBS to IBD - partly because of the possitive reaction to Prednisone. However, when I reduce Prednisone below 20 mg, all symptoms return. My Specialist says he has never seen a condition like mine ( and two of my children who have it too) and because it is unclassified IBD, he is prevented from prescribing other safer maintenance medication. I've been on Prednisone for over 6 months, and while still symptom free (30 mg presently, dropping 1 mg per 5 days) and having pretty bad side effects. Thing is, I dont want to stop Prednisone because it removes all the pain, cramps, nausia, boils, diahrohea, weight loss, dysphagia, fatigue and colic. That's a brief outline of my story so far :0)

 

[POTTYTIME!]

Hey rev:

Sorry u have been dealing with this for so long. The prednisone has done nothing for me except the side effects. My wife laughs at me cause I have a "pie face". The prednisone is not good to be on for an extended period of time. I hear of people having all these symptoms and no DX. all 3 of my test came out positive for CD. I would keep on the doctors. Dont give up.

 

[David]

Thanks for joining the community and sharing your story. I'm so sorry to hear of all your struggles. I can't imagine how hard that has been.

I understand your desire to stay on the prednisone. Obviously the long term side effects concern me though. Have your doctors given any suggestions on ways you might be able to alleviate those risks with supplements and such?

 

[Rev Rog]

Cheers, for the welcoming replies :0). I am waiting to have a Pill Cam of small intestine, as my last MRI was sub-optimal (I kept moving), and endoscopy and colonoscopy can't access much of the small bowel. My calprotectin levels are not too high, normally around 150. It's just so frustrating that I have been so ill for the last 20 years but with no DX, which is why my specialists think I have some undiscovered IBD condition. Had terrible sleep last night, with insomnia from the Pred. Don't get Moon Face, just a great appetite and mood swings. On Amytript, Losec, Quetipine too. Took 3 Zopiclone, but pulse of 100 BPM allowed only around 3 hours sleep :0)

 

[David]

Please let us know what they find with the pill cam!

 

[David]

Out of curiosity, have they ever put you on total enteral nutrition to see what happens with that?

 

[Rev Rog]

Out of curiosity, have they ever put you on total enteral nutrition to see what happens with that?

This was going to be an option, before I started Pred. With the amazing improvement with Pred, the GI Specialists are taking me more seriously now, and no longer DXing IBS, which I have been saying it isn't for literally decades. Apparently Pred has little or no affect on IBS? I am not discounting, deminishing or trivializing how horrible IBS can be for people with that condition, but I knew it was not what I had/have. I suspect TEN might be a future option, but it's like my DX and treatment plan is back at 'square one' since the improvement on Pred :0(

 

[Rev Rog]

Out of curiosity, have they ever put you on total enteral nutrition to see what happens with that?

This was going to be an option, before I started Pred. With the amazing improvement with Pred, the GI Specialists are taking me more seriously now, and no longer DXing IBS, which I have been saying it isn't for literally decades. Apparently Pred has little or no affect on IBS? I am not discounting, deminishing or trivializing how horrible IBS can be for people with that condition, but I knew it was not what I had/have. I suspect TEN might be a future option, but it's like my DX and treatment plan is back at 'square one' since the improvement on Pred :0)

 

[ezgoindude]

dude! we have matching calprotectins..... yea it was all iB.S. until I started loosing weight, that's when they jumped into the idea of cancer. Out of curiousity did they do any other imaging? CT scan or colonoscopy? Not saying to would solve your problem but maybe it would settle in their heads that you could handle a "healthier" med than pred onces they see what's going on.

 

[Rev Rog]

dude! we have matching calprotectins..... yea it was all iB.S. until I started loosing weight, that's when they jumped into the idea of cancer. Out of curiousity did they do any other imaging? CT scan or colonoscopy? Not saying to would solve your problem but maybe it would settle in their heads that you could handle a "healthier" med than pred onces they see what's going on.

Yeah, had CT same time as MRI, 7 colonoscopies, similar endoscopies, Barium swallows x around 4, xrays and imaging dyes. Yep, u r right. The plan is to find some biological evidence through biopsies. In NZ, alternative maintenance meds can normally only be prescribed after a biopsy had revealed inflammation, howeve my GI specialist has indicated he will give permission even if no evidence of typical IBD can be found/seen. I trialed one of the common alternatives, but reacted terribly after 4 hours, so had to stop and go back on Pred. It has been a mirical drug for me. Absolutely incredible after been in chronic flare for last 20 years and was reduced to skin and bones at 62kg, now at 78kg and entirely symptom free. Am taking vitamins and daily exercise to try and limit side effects. To be honest, I would rather be symptom free and cope with side effects, than live the hell of last 20 years again, even if the Pred reduces my life span :0)

 

[David]

I'm glad to hear you're supplementing and exercising at least.

I hope they get to the bottom of things for you soon though so you can get on a more targeted treatment regimen.

 

[Rev Rog]

I'm glad to hear you're supplementing and exercising at least.

I hope they get to the bottom of things for you soon though so you can get on a more targeted treatment regimen.

Thanx for the responses and encouragement. I hope to be able to remain on this support group for a long time, and get to know, encourage and walk the journey that is unique to those with IBD and/or its symptoms. I tried to join a different site/group while in hospital a couple of years ago, but some guy got quite upset because I said I was hoping to be diagnosed with IBD, and he took offence at that, and I just couldn't be bothered with any stress at that time :0)

 

[Rev Rog]

Just uploaded Avitar/photo of myself and lovely wife. Our 30th wedding anniversary tomorrow. Photo was 5 months ago, after being on Pred for around 4 weeks and putting on a good amount of weight, and feeling well for first time in decades :0)

 

[UnXmas]

Hi. Besides Crohn's, I have another illness that took over a decade to diagnose. It turned out it's a genetic disease, but not in the sense that it runs in my family, I just have a genetic mutation. There are recognised illnesses related to it, but my subtype(? I'm not sure what you'd call it) is unprecedented.

So, I guess I'm just saying I relate.

As for prednisone, I couldn't stand the insomnia and restlessness, but, after trying many other things, my doctor prescribed me amitriptyline and somehow that was just the perfect med for me; the insomnia and restlessness disappeared, and I began feeling the antidepressant effects as well. It's one of my miracle treatments. And I think in one of your posts you said you're already on it. What dose are you on? A high dose (up to 300mg) should knock most people out. But if amitriptyline isn't helping with the prednisone side effects, I think, if I were in your position, I'd continue hunting for meds (and anything else) that could treat the prednisone side effects, because there are a lot of options out there if you have doctors willing to let you try some. But you also have to consider that staying on prednisone isn't just about the side effects you feel now; it can be doing silent damage to your bones, your eyes and other things. I'm sure you've read it all and your doctors have warned you about it. But if you do stay on prednisone, put just as much effort into monitoring and preventing and treating these potential, long-term, silent conditions as you do into the ones that are causing you discomfort now.

I tried to join a different site/group while in hospital a couple of years ago, but some guy got quite upset because I said I was hoping to be diagnosed with IBD, and he took offence at that, and I just couldn't be bothered with any stress at that time :0)

Anyone who's gone a while with no diagnosis, or (perhaps even more so) anyone who has been told they have IBS, will understand the desire to have a real, concrete diagnosis that doctors will take seriously and try to treat. When you have terrible symptoms that show no signs of abating, having doctors and others say there's nothing wrong and expecting you to be glad about it is just miserable.

I hope you get a diagnosis and find successful treatment. And post on this forum if you need to talk to people who do understand why you would want to be diagnosed with IBD.

 

[StarGirrrrl]

I don't have anything useful to add, I just wanted to say how much I admire you for carrying on for such a long time.

I am 9 years in trying to get a diagnosis (Pred didn't work a few years ago on me but things have changed since then, who knows what would happen now) and have really had enough.

My life is on hold until I get diagnosed and treated, can't imagine being undiagnosed for 40 years. I honestly do not think I have the strength to carry on many more years of being sick, single, stuck living with my mother, little hope of things changing in the future.

I admire you so much and hope things are moving in the right direction for you.

 

[UnXmas]

Happy anniversary btw. :heart:

 

[UnXmas]

I don't have anything useful to add, I just wanted to say how much I admire you for carrying on for such a long time.

I am 9 years in trying to get a diagnosis (Pred didn't work a few years ago on me but things have changed since then, who knows what would happen now) and have really had enough.

My life is on hold until I get diagnosed and treated, can't imagine being undiagnosed for 40 years. I honestly do not think I have the strength to carry on many more years of being sick, single, stuck living with my mother, little hope of things changing in the future.

I admire you so much and hope things are moving in the right direction for you.

Keep going, StarGirrrl. :hug: