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New participant, advice welcome

New here, and still awaiting results of the Prometheus test, but GI doc suspects Crohn's based on result of a biopsy he took during a colonoscopy a few weeks ago.

My story really started years ago, I've suffered from diarrhea for at least fifteen years, varying from as much as two or three days in a given week to none at all. I never really brought it up to a doctor as I basically just dealt with it.

About two and a half years ago I had my gall bladder removed after having stomach, back, and chest pains for months, sometimes quite intense. That seemed to help, but just over a year ago, I found myself making a trip to the ER with back pain, middle/lower back. While it was diagnosed as a spasm, treated with muscle relaxers and I was released, I suspect this was the beginning of a rough year.

About six weeks later My wife found me curled up in our bathroom with severe - I say an 8/10 - abdominal pain. Wound up spending four days in the hospital with a small bowel obstruction diagnosed via CT scan, treated with IV fluids, zofran, dilaudid, morphine, and an NG tube to rest the bowel. All sorts of tests followed after my hospital release, including an endoscopy and colonoscopy, small bowel follow thru, and more and more. All normal. It was dismissed as a paralytic ileus and a one time event, as there was no bivouac mechanical obstruction.

This happened again a few months later, and the surgeon determined I had an umbilical hernia, and that was repaired along with a complete laproscopic exploration of the small intestine, finding nothing out of the ordinary. The surgeon suggested that the hernia probably caused the SBO's.

That made sense until I had another SBO and hospital stay in February, on my birthday as it happens. I like to joke that my wife had made reservations at a very nice restaurant, but instead I had barium for dinner. Once again that cleared without surgical intervention, and a gastroenterologist got involved more deeply in my case.

Around this time, occasionally I would notice blood in my stool. I've had some incidences in the past where, after a particularly bad bout of diarrhea I would have some bright red blood, but my PCP attributed that to tearing/fissure due to straining. This time it was different, red but less bright, and sort of 'marbled' into the stool, if that makes sense.

More tests, and lots of medication changes, including something called Librax, which seems to help the diarrhea but I combine now with Colace to help keep things moving. Another hospital stay in April, but this time no obstruction was present, but I was apparently quite constipated and vomiting whenever i tried to eat anything, even liquids, and dehydrated. I was treated for the pain, nausea, and with laxatives (miralax and magnesium citrate). Once things starts moving again, I felt much better, and was again released under the care of the GI.

More blood in the stool led to a second colonoscopy. This time GI found some sort of lesion that was bleeding, which he cauterized. He also took some biopsies, but no polyps. I found myself spending that evening in the hospital again, as after coming back to consciousness following the scope I was again in severe pain. Hospital Radiologist said he saw "appendagitis" which I'd never heard of, but apparently shares many of the symptoms I've described.

GI, when I followed up with him the next week, dismissed that diagnosis, saying he didn't see that on the CT Scan. Instead he said the biopsy results were positive and indicative of Crohn's, and sent me off for the Prometheus test.

Generally speaking I continue to have diarrhea and an urgent need to evacuate a few times per week. I have had abdominal pain for about the past year, probably about seventy percent of the time. Sometimes it's relatively mild, around a 3/10. Sometimes it's more severe, say 5-6/10. On those days I have started taking Percocet, usually one or two doses gets me past the severe pain and back to a tolerable level. Anything worse than that and I would probably be making an ER trip, but that hasn't happened yet.

Anyway, the tentative diagnosis was about ten days ago, and I have a follow-up with the GI next week. So I'm awaiting the results. On the one hand, it's a frightening diagnosis. On the other, it will at least be a comfort to know what it is and start treatments. But what if the Prometheus results are negative? Does that override the biopsy and symptoms?

I'm curious though if this diagnosis makes sense? I suspected maybe Crohn's based on the symptoms alone, but the radiologist that did the small bowel follow thru said no sign of it last July. Could that simply be because he was looking at the junction between the small and large intestine for the telltale signs, and I've got a different variation?

I get the impression that Crohn's is a very personal disease,and effects different people in different ways, is that true? And if so, could my presentation - recurring diarrhea, abdominal pain, cramping, obstructions that occur and clear basically n their own - be an example of this?
 
Hello Ribo and welcome to the forum :)

I'm sorry you've had such a time of it getting to the stage of a diagnosis, it's quite a rocky road you've traveled. I'm sorry this has happened to you but at least, though small consolation, you can now get a treatment plan that will help you manage your symptoms and hopefully get you into remission.

You are quite right about Crohns being a very individual disease, from our symptoms, foods we can and can't eat and how we tolerate medications so no two people are the same but we will have similar troubles and will understand what you are are going through. I think I have recently been having difficulty with obstructions that have cleared at home and I also experience all the symptoms you describe too.

Regarding you query about the prometheus test results over-riding the other results, I don't imagine it would given that your biopsies came back as definite Crohns, but I wouldn't know for sure? I'm waiting on result from a small bowel series at the minute and am a little apprehensive as to what that will bring.....you mentioned yours was last July with no sign then of Crohns , I'm not sure why that would have been, could be a question to ask your GI next week?

I'm sorry if this is not particularly helpful, I'm sure there will be others on here that can give you more info than I can, really just wanted to welcome you to the forum.
 

afidz

Super Moderator
In my opinion, if your biopsy results were positive for Crohn's, then you probably have it. Prometheus is still a new test and can be unreliable, whereas a biopsy is almost always accurate.
Crohn's is different for everybody. How they feel, pain tolerance, what they can and can't eat or what signs and symptoms they present, how easily they do (or do not) retain remission, how often they go to the bathroom. Everything is different. But the good thing about this community is that its so big that someone on here has been through the same thing on you and can offer you advice or support.
Let us know about your official diagnosis and what your plans for treatment are. I hope you feel better soon
 
Thanks so much for the replies.

Lizbeth, while I'm not 100% sure, I suspect the reason the small bowel follow through was deemed negative for Crohn's is they were looking primarily for the junction from small to large bowel (the illium, I think?) and that may not always be where Crohn's manifests itself. At least, that's my understanding, from what I've been able to read so far.

I do have a follow-up, question. I know Crohn's can cause obstructions, but as I understand it these are usually mechanical obstructions caused by a significant narrowing of areas of the small bowel. Every time I've had an obstruction, they have apparently cleared simply by resting the bowel (in other words, NG tube and NPR plus IV fluids combined with medication to he with nausea/ vomiting and pain). I'm under the impression that when the bowel narrowing occurs (is that what's referred to as strictures?) it often requires surgical intervention.

Mine has always been described as a paralytic ileus, in other words non-mechanical in nature. The GI has speculated that I often have SBOs that appear to be spontaneously resolving, which I haven't heard or read about anywhere in my research. He is making this speculation based on the way I describe my pain and how it comes and goes. Has anyone heard of this sort of manifestation of Crohn's?

Thanks in advance!
 
Hi Ribo,

Recently I have had a few episodes that I described to a friend and she thought it might have been partial blockages, I still don't know if if have strictures or inflammation but I do know that a narrowing showed up on my CT, it would be nice to know what's going on inside me, my GI is considering surgery and that's why the SBS was ordered.

From what I understand surgery is for when the narrowing is caused by scarring that treatment won't make go away, if it's inflammation then drug treatment would be a preferred option. I'm sure that someone with more knowledge than me we be able to provide a better answer though as I'm not completely sure.
 
Hi Ribo,

Recently I have had a few episodes that I described to a friend and she thought it might have been partial blockages, I still don't know if if have strictures or inflammation but I do know that a narrowing showed up on my CT, it would be nice to know what's going on inside me, my GI is considering surgery and that's why the SBS was ordered.

From what I understand surgery is for when the narrowing is caused by scarring that treatment won't make go away, if it's inflammation then drug treatment would be a preferred option. I'm sure that someone with more knowledge than me we be able to provide a better answer though as I'm not completely sure.
I believe the scarring is referred to as adhesions. The surgeon ruled that out last November when they did the exploratory laproscope. I know obstructions can and do happen with Crohn's specifically and IBD in general, I just wasn't sure if they spontaneously happen and then resolve?

In any case, I saw my GI this week. He said the Prometheus test was actually negative but given my symptoms combined with the biopsy and colonoscopy results he's still thinking CD.

The plan he laid out was to start me on Budesonide, and a planned course of three months, watching the results closely. He also wants to do another endoscopy and a capsule endoscopy to determine the extent of the damage to the small intestine. He raised a risk with the capsule endoscopy combined with my history of obstructions that the capsule could get stuck. If that happened it would have to be removed surgically. My thought on that was if it got stuck, they'd know pretty definitively where the damaged area of the small bowel was.

So anyway, now I'm researching the new medication, which I started on Thursday. I see the GI again in two weeks to check on progress and plan what happens next, including any procedures.

I actually feel better simply because we actually have a tentative diagnosis and a plan. That alone gives me hope that I can get things under control and back to semi-normal someday.

Thanks to everyone for the responses. It's a tremendous help to know you're not alone and not imagining some if the symptoms that just seem so crazy, other folks just can't seem to understand.
 
I definitely think once we know what the a problem is we can then deal with it both physically and emotionally, I just got mri results which said no detectable abnormalities, yet I have daily pain, it's frustrating and demoralizing.

Regarding your blockage question, it does appear that they can happen and then pass but I think it takes a bit of work on our part by changing diet and eating patteren and taking lots of fluids, you should check out this support group cos there is some good info and chat there about it. http://www.crohnsforum.com/showthread.php?t=29625

I was told the same thing about a capsule endoscopy of the risk of it getting stuck I hope the SBS willl show enough that I won't need it cos I really do not fancy some emergency surgery thank you very much ! :) How did the start of your new meds go, what is it?
 
The new medication I just started last week is Budesonide, which is a corticosteroid that (from what I've read) has less negative effects when compared to Prednisone.

I was told the same thing about a capsule endoscopy of the risk of it getting stuck I hope the SBS willl show enough that I won't need it cos I really do not fancy some emergency surgery thank you very much !
While I agree I'd rather not have to undergo emergency surgery, I've maintained for some time now that, if they could identify the foot, feet, yards of intestine that had to be removed and it would resolve the pain, I'd probably be open to it. I'm sure others that have had to undergo resections think I'm nuts, and that's probably true. I guess I just meant, if they could figure out what was going on, I'd prefer that to the not knowing.

I definitely think once we know what the a problem is we can then deal with it both physically and emotionally, I just got mri results which said no detectable abnormalities, yet I have daily pain, it's frustrating and demoralizing.

You're 100% correct, there's some comfort in knowing, and now at least having a plan. I hope you can get to that point soon! What you're describing is pretty much where I've been for maybe four or five months, no where near what others have gone through, so from that perspective I've been lucky.

It's funny - I guess funny? - how you can learn to live with some stuff. I currently live with level 4-ish pain in my abdomen, probably around 70% of the time. It moves around and sometimes it spikes, but so long as I'm able to manage the pain and stay below say a 6 out of 10 scale, I can deal with it. (Admittedly over that for long and I'm heading to the ER where they can help get ahead of the pain curve.)

My wife has to remind me from time to time that this really isn't a normal way to live. I just tend to try to deal with it and stay upbeat as much as possible. To quote one of my buddies when I had my last barium workup, "This too shall pass." :smile: I'm confident eventually a treatment will work. I just try to be patient while working with the docs to try and figure out what that treatment will be.
 
Hi there,

I've been quite lucky this week (I think) had a dietetic appointment yesterday and was able to see my GI instead of waiting for months, my SBS was described as "iffy" and recommended capsule endoscopy, so my dr said he would try and do it quickly for me, well I got a call today to go in on Thursday for it, I'm just glad to be doing something about it.

I'm like you in that I would happily go for planned surgery if there was the potential to ease daily pain of around 5 on the pain scale which can spike to 10!! I think we do have to learn to live with it and do become more tolerable to pain because really what's the alternative? I reckon I would go a bit insane if I didn't accept and manage the pain.

I was on budesonide for 6 weeks but it wasn't enough at that time so I was changed to prednisolone, I think my diabetes complicates the issues and it was really rough being on steroids for 10 weeks, I would now view steroids as a last resort. Good luck with the new meds, really hope it does the trick. :ghug:
 
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