Update and some questions!

[JDTM]

Howdy folks,

Been a while since I've contributed anything substantial here, but this is kind of an interesting set of circumstances and I thought the story was worth telling!

My case is fairly "mild," from what I've been told -- but things didn't feel so mild this past Friday when I was dealing with crazy waves of excruciating pain. I finally took myself to the ER late in the evening, and after a long wait, told them that I was experiencing pain and had Crohn's, and they promptly took some blood for testing, did a cat scan, and gave me some meds for the pain. Little did I know that they were going to discover a blockage and they were going to admit me!

First off, let's talk about nasogastric tubes:

They're the worst.

That aside, they inserted it after I was told about the blockage in order to pump air/liquid/whatever out of my stomach, because it apparently had nowhere else to go. Having one of those things down your throat is pretty terrible, but it definitely helped to alleviate some of the pressure and pain, and I was told that it was also being done in order to help the blockage relieve itself. I also had an MRI done a bit later on.

So that leads me to some questions. The tube was kept in for around 48 hours, after which I was deemed well enough for them to take it out and start on liquids, then soft solids, and then I was finally discharged on my third day. The blockage was somewhere in the middle of my small bowel, but that's NOT the site of my Crohn's (at least not currently), which is located at the terminal ileum. According to my blood reports, there wasn't significant inflammation (one of the markers was high, but it was generally agreed that I wasn't in a "flare," and the consensus was that corticosteroids weren't going to help because inflammation didn't seem to be the cause), and sure enough, the blockage has continued to alleviate and improve after I got out of the hospital. I'm going in for a follow-up with my GI next week.

Has anyone else ever experienced anything like this? I'm happy to have avoided surgery (at least for now), but I don't know if this was something IBD related, or just a fluke.

Hope everyone is doing alright out there!

 

[littlemissh]

Having normal blood markers does not mean you aren't in a flare. I would wait and see what your GI says. It may be you had active disease where the blockage is but it is now scar and not active disease, or you may have active disease there. They may want an MRI enterography which looks at he small bowel in more detail.

 

[JDTM]

I did have the MRI enterography while I was in the hospital, so perhaps my GI can tell me more about what they saw when they get back to me. It sounds like it was resolving by the time they put me in the MRI. Hmmmm...

 

[ronroush7]

I think I agree with littlemissh.

 

[Jabee]

My obstructions occur when my crohn's is active; CT scans show the inflammation and also the narrowing in my terminal ileum. My CRP goes up but not my ESR. Did they give you any idea what was causing the obstruction if you aren't in a flare?

 

[JDTM]

Not yet. Ironically, I was trying to eat healthier a few days beforehand -- eating much less food, high fiber stuff (apples in particular), so that was my initial suspicion. However, the GI in the hospital wasn't so sure that was the cause, because it didn't seem like active inflammation, and the obstruction happened in a spot in the middle of the small bowel -- not the place where I originally had inflammation (and presumably, some residual scarring/narrowing). It seems strange...

(Important to note that I still feel just fine today. This is a far cry from how I felt when I was flaring. I'm sure I could have some simmering inflammation, but...)

 

[Cat-a-Tonic]

I haven't had an obstruction (yet, knock on wood) so I can't answer to that. But I wanted to say that yes, I agree, NG tubes are really awful. A few years back, I had to have an NG tube in for 24 hours to do a pH impedance test to check the severity of my GERD, and it was an absolutely miserable 24 hours. I'm sorry you had to have one in for twice that long, I'm sure that was extremely not fun.

Do you think LDN is still working well for you? It sounds like you're probably not in an active flare, but that is worrying that you had an obstruction for unknown reasons. I hope the scan results are enlightening and that the cause is found. I actually just had an MRE myself last week Friday (we're scan buddies!) to see if I'm still flaring or what's going on with me. So I hope we both get some worthwhile MRE results back soon.

 

[JDTM]

Hey scan buddy!

I'm guessing that the LDN is still doing its thing... I certainly am not controlling this thing with diet, that's for sure. Which begs the question, are you on a pretty restricted diet, or are you eating whatever you like? Hopefully you can still enjoy the occasional cheese curd.

 

[Cat-a-Tonic]

Well, I have been in a flare that started in July - my grandpa died in May and I think the stress and grief of that and of having to put my grandma into a home due to her Alzheimer's is what set the flare off. Then in August I was hospitalized for 5 days because at that point I just couldn't digest anything, even a banana was sending me running to the bathroom 10+ times, and I had lost 17 lbs in a month. During my hospitalization they put me on EEN (Vivonex) which I stayed on for 2 weeks, and after that I slowly transitioned over to the low-FODMAP diet, and fortunately that helped a lot. I'm still doing low-FODMAP with a few cheats (I refuse to give up avocado and it doesn't seem to cause me any symptoms anyway). I am lactose intolerant, but goat cheese is allowed on low-FODMAP and it doesn't give me any symptoms the way that cow dairy does, and I've found a local grocery store that carries goat cheese curds, so no worries - I can still get my curd fix!

 

[littlemissh]

What on earth are cheese curds…they sound revolting!

 

[Cat-a-Tonic]

Cheese curds are delicious! They're little pieces of cheese that sort of squeak as you chew them. I live in Wisconsin, the dairy state, and cheese curds are extremely popular here. Sometimes in the summer we go to the farmer's market and buy fresh cheese curds, they're so good. I can only eat a few without upsetting my stomach, but it's worth it.

https://en.wikipedia.org/wiki/Cheese_curd

 

[Lam123]

Hi! I have had a blockage and have crohns in the same area as you. I was also not in a flare, my GI said it must of been something I ate. At that time, I didn't know there was foods I needed to be careful with. So, there are a few foods that I can never have, and then another few that I only have once in awhile.
How did you sleep with that tube down your throat? They never did that with me. But, the blockage was so terribly painful, worse than child labor!