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Small bowel disease - experience anyone?

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Crohn's Disease
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Posted 1/5/2016 2:04 PM (GMT 0)
Hello everyone!

I am new to this forum, although I have been reading along for a while now. I decided to register to share my story in hopes that some of you might have a similar experience and/or any words of advice.

I'll try to keep it as short as possible:
My problems started 7.5 yrs ago with sharp pains in the lower right quadrant. Went to the doctor, bloodtests showed accute inflammation, was sent to the hospital on suspicion of appendicitus. That was not it. Pain continued, bloodtests kept showing inflammation. Had a colonoscopy: clean. Was told IBS and sent home.

Took ages for the pain to subside, went on a lactose free diet, which helped a bit. Decided to deal with it.

Fast forward to June 2015: after weeks of blood in stool I went to my doctor. Bloodtest done: again it showed inflammation. Referred to a GI. Sigmoidoscopy: clean. Many more bloodtests: persistent inflammation. Anemia. More elaborate bloodtests (esr, leukocytes atc): all numbers in red. Defecations: more than 5 times per day. Colonoscopy: clean. GI suspected small bowel disease and requested pill cam. Results took ages but showed ulcers throughout the small bowel. She told me Crohn's was now a 99% certainty. The crapty thing however (no pun intended) is that although my entire small bowel shows ulceration, the duodenum and terminal ileum are spared. GI needs to confirm with biopsy. Had a EGD; no ulcers reached. Random biopsies were inconclusive. I now get another colonoscopy in February hoping that they will be able to reach it from the bottom up. If that does not work i will get referred to a specialist hospital for a double balloon exam.

I am currently on budesonide (9mg), which is not doing anything for me yet. Two more weeks of trying and then they will take me off of it. They were able to rule out whipple's disease and celiac disease. I have not taken any NSAIDs in the past years.

I am having a hard time and it seems to take forever to get a definitive dx. Sorry for the long post, guess I just needed to vent. I am very curious about all your experiences. Any words of wisdom or encouragement are greatly appreciated. I am also very curious if any of you think it could still be something other than Crohn's?
Posted 1/5/2016 8:41 PM (GMT 0)
Were you symptom-free for the 7 years in between your first bout of symptoms and your current ones? Pity you didn't decide to try a gluten-free diet, as coeliac disease is much more likely to cause ulcers of the small bowel than lactose is.

I don't have any great advice or words of wisdom I'm afraid. Crohn's - with the exception of Crohn's colitis, which is confined to the colon - usually appears in the terminal ileum. I presume it can skip the terminal ileum, though: I just don't know how often it does that.

Entocort does usually work for Crohn's, but you could be in that minority of people who don't respond to steroids or who respond very slowly. A stronger steroid like prednisone might work or it might not. But personally, having tried one steroid I wouldn't be in any rush to try another: steroids are best taken as infrequently as possible.

Even though I have had a Crohn's diagnosis for years, I do understand the slowness of undergoing multiple testing. In that particular boat right now. It seems like it's taken them months to find out I have disease in my rectum; now I'm trying to find out what's going on in my small bowel. In the meantime I'm having pain and my surgeon doesn't want me to go on steroids until I've had an MRI scan (which will probably be in February).

All you can really do is manage the symptoms in the meantime. This can be done with other meds (painkillers, Imodium) or dietary changes. But yeah, it is extremely, extremely, extremely boring.
Posted 1/5/2016 9:42 PM (GMT 0)
Maybe ask for the Serology 7 blood test from Prometheus Labs. The blood testing is not foolproof but if that is positive along with the pill cam showing ulcers, you might be able to make the diagnosis without a biopsy.

Here's an article about the Serology 7 testing: http://www.prometheuslabs.com/resources/ibddiagnostic/ibd-sgi-monograph.pdf
Posted 1/6/2016 10:35 AM (GMT 0)
Thanks so much for your elaborate reply @NiceCupOfTea! To answer your questioms:

No, I have most definitely not been symptom free over the past years. I have had so many bouts of diarrhea, urgency where I barely made it to the bathroom in time (or not), canker sores that would not disappear, tons of gas, fatigue and pain. The pain never really went away, I guess I just got used to living with it. And sometimes (like now) it gets worse than others. I never went back to the hospital, because I hated the way I was treated the dirst time, it made me very insecure and it made me doubt myself and my sanity. Also my doctor would not have been so keen to refer me, because I already had the IBS 'diagnosis'.

The choice for a lactose free diet was made when I was seeing a dietitian for nutritional advise. Since nothing else seemed to help me with my stomach aches I figured I'd try this. Lactose was chosen by elimination. I was glutenfree for months, but it disn't help me at all.

I indeed understood that the terminal ileum is involved in the majority of cases, but my GI has stated that it does not have to be: it can still be small bowel Crohn's if the TI is not involved. I just don't seem to be able to find a lot of info on cases where the TI is not involved online...

I understand your perspective on the steroids: i agree that the less is the better in this case. I do however just really want to start feeling better. And since the entocort is not doing anything for me, I would be open to trying prednisone if the GI suggests it.

I am so sorry to hear that you are back in the testing boat, esprcially since you have had such a history with Crohn's already! Hope they will be able to schedule that MRI very soon!
Posted 1/6/2016 10:38 AM (GMT 0)
@Gumby44, thank you so much for your advise! I read the article and it sounds very interesting. Would be great if that meant the hunt for biopsies could be stopped:)
I will ask my GI about it when I speak to her on two weeks. I must say though that I cannot seem to find any information about it in The Netherlands (where I am from), but it is definitely worth asking!
Posted 1/6/2016 6:40 PM (GMT 0)
Hi,
Your story is similar to mine I am currently being treated with IBS although. I have had a bad Tummy for as long as I remember loose stools, gas, wind, mucus, night sweats a mass in my tummy etc. I finally went to the GP who made me have bloody tests and a stool sample, bloods fine stool sample had slight inflammation so I had to have a colonoscopy where they found 5 apthous ulcers, there was then suspicion of chrons. My biopsies got lost?! So frustrating do I never got a diagnosis ...so I also like you was put on a 3 month course of entocourt which also didn't help although I did have my very first normal bowel movement in what felt like years! I did start to feel slightly better... But then all the symptoms came back I had further tests MRI & ultra sound which came back normal. I decided to pay private because this just got me down so much.. I had another colonoscopy which showed a small erosion.. My consultant tells me he does not have enough evidence to diagnose as chrons so IBS is what I am being treated for! I truly believe there is something else going on in my tummy besides IBS. I feel like I have got no where and may request the pill cam! My advice is to stay persistent until they get to the bottom of it! I totally feel for you and understand how your feeling with not having the answers and still in the same pain! It's horrible! I was also put on a elimination diet but this didn't work infect it made my symptoms worse! The whole thing is a vicious circle and the anxiety that comes with it drives me mad! Keep asking for test after test maybe an MRI scan or a repeat colonoscopy. You could always ask for a second opinion and see a different GI! I hope this gets sorted for you! It drives me mad!!
Posted 1/6/2016 8:40 PM (GMT 0)
@Nikki - Ah okay. It really does sound like you were fobbed off with the IBS diagnosis, to be honest. The whole point about IBS is that it doesn't have any detectable markers - no raised inflammation, etc. However boring, I think you have to keep on pressing ahead with the tests until you get a proper diagnosis.

You might find this thread an interesting read.

www.crohnsforum.com/showthread.php?t=33497

Unfortunately doctors seem extremely reluctant to diagnose Crohn's in the presence of absent or negative biopsies, even if you have raised inflammatory markers, ulcers, etc. But it can be done.
Posted 1/7/2016 9:47 PM (GMT 0)
Hi @Babybison! Sorry to hear about your diagnosis journey. I think I would go completely nuts if they would lose my biopsies... I think there are indeed a lot of similarities between your story and mine. As I understood it, you actually have had ulcers found at the most common 'spot' for Crohn's? But your GI still thinks it is IBS? That sounds incredibly frustrating! I do consider myself lucky with my GI, who is absolutely convinced that it is Crohn's. She explained to me that she only needs the biopsies to make the diagnosis a formal one. I definitely intend to sit this story out to the end and I am fully willing to do whatever it takes. First step will indeed be a new colonoscopy, which has already been scheduled for the beginning of February. Fingers crossed that they are able to find what they need. If I were in your position, I would definitely request a pill cam. If that shows you have more ulcers in other parts of your small intestine they will soon give up on the IBS idea. At least I would hope so! Hang in there and sending you all my best!
Posted 1/7/2016 9:52 PM (GMT 0)
@NiceCupOfTea: thanks again for your response and the words of encouragement! I completely agree that the IBS diagnosis was utter nonsense. My family doctor never bought it and always explained that IBS could never affect my inflammatory markers. I am absolutely going for a diagnosis in this round and will continue the medical exams. Thanks also for including the link! I read all of the posts and it has definitely encouraged me to keep pursuing a diagnosis. Good to know that confirmation by biopsy is not always easy... and also that negative outcomes do not mean you do not have it.
Wishing you all the best and a speedy MRI!
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