Diagnosed, re-diagnosed; still in denial :-)

[LondonFoy73]

Hello...

I'm Peter, 39, live in London.

I was first diagnosed with Crohn's around 7 years ago. Prior to this, everything was okay with my digestion. The leadup was a terrible cold/flu type of illness that I couldn't shake for about 3 weeks, so I went to my GP and was given a strong course of Ciprofloxacin to clear it up. About 4 or so days into the Cipro, I started vomiting and diarrhea, so went back to GP and was told to stop the Cipro....however, the vomiting and diarrhea continued. Over time they lessened, but I never regained what I would call 'normal' bowel functions, so ended up going back to the gp many times and getting referred to the Gastro specialists at my local hospital. After many test which included the Barium milkshake (yum), colonoscopy etc, the results were still 'inconclusive', but 'probably' crohns.... so I was put on a high dose of Pentasa, the 5 asa stuff.... it did nothing... so I was then put on 6mp (azathriopine), which didn't do anything to the vomiting and diarrhea, but made me feel absolutely awful and pick up every cough, cold and anything else hanging around that was going...SO..... I jacked all the medications in and concentrated on my own diagnosis....:yrolleyes:

I am a firm believer of 'you are what you eat' , so months of research on crohns, ibs, ibd and the form and function of the intestinal tract and it's various elements led me to a change in diet to less processed foods, ensuring meat was properly cooked, reduced the raw vegetables / salad, stopped eating other people's bbq's, etc... I then introduced a very high probiotic and prebiotic course into my system to rebalance the internal flora/fauna.... over time, this worked....yay says me...

However, I would still get the occasional vomit/diarrhea...usually because of a slip in the diet or eating 'old food' that had been in the fridge to long... I just chalked it up to having a sensitive intestinal tract...but, when I read everybody else's symptoms of pain and suffering, I'm not sure that I'm having the same things.... my troubles would mostly occur when I didn't eat food as opposed to when I did eat food. I would sufffer from a pain in the middle of the chest, just under the V of the rib cage, not to left or right sides... Yes, there would be very painful diarrhea... and at that time cramping, but that's normal for diarrhea....isn't it?

....So, about 6 -9 months ago, I noticed that I was getting a lot of acid reflux troubles and feeling very full when eating, so much so that it affected my portion sizes and left a painful heavy feeling in that centre spot again... the reflux got worse and would be anytime of the day or night, then vomiting would start after having a meal...not even a big meal... but probably an hour or so afterwards, I'd bring up some or all of what I'd just ingested...hmmmm says I.....

Living on imodium and antacids... I held things together and tracked back to the GP... had a helio bacteria stool test which came back negative... got referred to the gastro guys again.... had a top down endoscopy which showed mild inflamation and irratation down by the illeocaceal valve, then got an MRI which showed perfectly normal small bowel as the gastro thought there could be blockages or strictures formed.... nope.... and then this Monday had my 2nd colonoscopy...it was here that they started to see troubles.... from the larger intestine, the illeocaceal valve is inflamed and narrowed, so much that they couldn't get the endoscope in to take a look, there is a little erythema around that area, and then back down in the rectum/anus area there is a patch of serpiginous ulcers... the consultant then re-diagnosed and said definite symptoms / signs of crohns... but I'm not sure I believe him.... Yeah, I know.... I'm in denial.....but.... here this...

As part of my last 6 months regime, I got put on Omeprazole, the proton pump inhibitor to reduce acid production.... hey, that's almost a wonder, miracle drug.... as soon as I got on that, my symptoms dissapeared.. and I mean 110% dissapeared almost immiediately... I know that it's directly linked as I forgot to take the meds one day and I was straight away back to square one... so once I restarted, 24 hours later and everythings cushty again.... stool consistency back to almost normal, no more vomiting, no more diarrhea, no more any troubles....

Over the years, the only other signs/symptoms I've had are 2 peri-anal abscesses which needed draining, one with a seton.... and then a 3rd really annoying subcutaneous abscess right in the middle of the left butt cheek:ymad:

After Monday's colonoscopy, I've been put on a high dose of prednisolone 30mg tapering... 25mg mercaptapurine, 20mg calcium supplement and continue the omeprozole....but I still am not sure about it all... I just don't think It's crohns.... I know looking at the colonoscopy report that there are areas of inflammation and ulceration.... that's a given.... but how can reducing the acid production have such a profound efffect on the symptoms??


So.... Not quite sure what I'm asking you guys, but I have an urgent followup in 2 weeks with the consultant and want to give him a hard time to make sure that the diagnosis is accurate and that the meds are also accurate....

Any thoughts, suggestions, help, sympathies...etc... all greatly welcome..

Thanks....

...The End !!

 

[lizbeth]

Hello Peter, welcome to the forum

I can understand why you feel the way you do as it is a very complex condition that we have. I didn't think I had Crohns cos I thought everyone with it was really slim where-as I'm definitely not!! lol and I didn't have diarrhea which I thought everyone had, now I know better Everyone experiences Crohns differently and we all react differently to medication and foods etc, I'm still learning what works for me as I'm relatively new to the disease, just 6 months.

I did experience the pain you describe just under my rib-cage and was put on Omeprazole 40mg daily and it really helped too, the pain I had there is what took me into casualty in the first place. It turns out I have a hiatus hernia and inflammation and there had been a query of Barrats Esophagus but thankfully it's not . My colonoscopy showed some inflammation and ulceration around the terminal ileum which corresponds with where I have daily pain.

You asked about how reducing acid production helps symptoms, well, I don't know for sure so please don't take this as gospel, but I have a friend who has an ileostomy bag, at the minute they are having a lot of trouble around the stoma because the waste that is passing into the bag is very acidic and burns the skin around it. My friend is now going onto a very bland diet to try and reduce the acidity of the waste as this was how it had been helped before. As I say I don't know if this is correct but it helps my friend, I'm sure there will be others on here that will know more than me.

I'm sorry I can't offer any real pearls of wisdom but I do hope that you find some peace of mind and maybe acceptance of the situation? You will be in my thoughts, take care and big hugs to you. :ghug::ghug:

 

[mccindy]

Hi Peter. I can't say I'm envious of your diagnosis because it definitely sucks to have Crohn's, but I am a little.... since I am still waiting for a diagnosis. I was told once I had Crohn's but my internal doc doesn't think that's what it is because I haven't had any flares for 18 years (til now) and blood tests and scans have been negative. Sounds like your testing was pretty conclusive. At least the meds are giving you some pretty extensive relief, that's gotta be pretty nice. As long as the results are positive, I'd go along with the diagnosis and meds. If nothing was working, then I could see you questioning it.

 

[staloffn]

I was finally diagnosed because of a fistula/abscess. they looked at it and said,"oh i bet you have crohn's, we'll do a colonoscopy to confirm but i have no doubt" and there it was, no diagnosis for 5yrs and then instant certainty. it did take a long time to get to the correct doctors but i felt like my symptoms were pretty text book.

 

[LondonFoy73]

Well, I'm 6ft tall and slim/medium build, so potential body type for crohn's. What I found interesting while reading on here, is there's a blood test that screens against a defective gene thats been mapped as a predictive indicator for crohns, but nobody seems to offer this, plus there's some classic histology signs when biopsies are taken, also not normally offered or discussed when professionals.....mayeb they think we are too stupid to understand the outcomes?? I know that crohn's can be an illusive disease to pin down, but it seems to me that there are some definite indicators that can be used to definitively diagnose.....

My main question, is that on various medications I get worse not better or there's no improvement (5 asa), but just through the introduction of omeprazole, my entire system calms down and starts getting back in shape....sounds a little too coindical too me, which is why I'm questioning the original diagnosis...

 

[strawberrys78]

Hello Peter!

I completely understand where you are coming from. My doctor refers to my condition as "Crohn's" but was at first in denial that I had Crohn's, (she thought I had IBS). I was never truly 100% diagnosed with Crohn's. It is very frustrating to not be getting answers. I know how disappointing it can be. Sometimes I do not think my doctors have any idea what they are talking about.

I also find it difficult keeping up a certain diet. I never know what to eat because some "healthy" foods trigger me, or trigger others, it is so confusing!!

A lot of your symptoms in fact sound like Crohn's. It can cause inflammation in many places, not only the bowel (which I am sure you already know with your research)!

I do not really know what advice to give as I am just figuring this all out for myself. But I hope you feel better soon and get the answers you are hoping for!! It is definitely a long and frustrating road. We are all here for you!