Sudden onset blockage pain with out stricture?

[vanilla_chai]

Hi all, I just got some good but confusing news from the nurse at the GI office. After getting a blockage a week after Remicade (it may have been partial, they didn't use contrast on the ER CT scan and after 1.5 days @ 6mg of solumedral every 8 hrs, the second CT showed a thin stream of contrast entering the cecum) several drs suggested a stricture might be my problem. To see where things stand, I had an MRE this week. I got a call yesterday saying there was no sign of stricture, just some inflammation.

I'm thrilled to not be facing surgery, but now I'm worried about what this means...
I have a dr apt in 3 weeks but thought I'd ask if anyone had encountered this... my big concern is I've had these pains off and on over the years. Until this time they'd always cleared within 18 hours and while they're really unpleasant, I wasn't all that worried about them since I just had to wait them out. Unfortunately, they've gotten worse over the years. Last year it did clear after 18 hrs but was the worst it had been. So this year the puking started from the beginning though was not constant and after 30 hours, I went to the ER and ended up in the hospital for 5 days

so, stricture or not my fear is still the same. I'm afraid to travel far or make long term plans for fear I'll end up sick, esp sick away from home and with new Drs. They have almost always happened out of the blue wo warning. I'd been feeling nauseous leading up to remicade last time but the remicade had made me feel so much better, and then, bam! I'm in the hospital...

I don't see the dr for 3 weeks so I'm guessing he's going to want to see if the 10mg/kg of remicade works (I had been on 5 up until this last time). I hate waiting...

In the mean time, has anyone seen blockages appear out of the blue without a stricture? Anyone get a solution so its not a constant concern?

 

[mikeyarmo]

Hi vanilla_chai,

I am not certain, but perhaps what the doctors found was that instead of a stricture existing that had to be removed in order to allow food to pass through it at all, they instead found only some inflammation. This might make it more difficult or painful for food to pass through than if the intesntine was totally healthy, but that they did not see surgery as being a necessary option at this point.

This could be why you are still suffering pain even though a total blockage/stricture does not exist. The inflammation may be causing things to get stuck in your intestine as a partial blockage or just move through the intestine more slowly.

When I was in a similar place as you are now, I did my best to eat foods I knew were safe for me (which for me were mostly liquids like clear chicken soup, very light and flaky fish and mushy boiled vegetables) and did my best to reduce stress. In terms of eating make sure you are eating slowly and thouroughly chewing your food before swallowing to make digestion as easy as possible on your body.

Stress can not help your body in any way which is why I recommend finding any ways you can to remove it. This can be done whatever way you know from past experience works best for you (a warm tea, meditation, calming music, naps, etc.).

Do your best also not to stress over waiting either if you can help it at all as once again it will not help you feel any better. When I am in a similar place, I do my best to try and recognize that the appointment exists and in the meantime all I can do is focus on my self and my own health. I get impatient and frustrated also, but we have to recognize that we just can not control how much time exists until the next appointment and we have to control our response so that we can be a bit more stress-free in the mean time.

Good luck over the next 3 weeks and I hope you know you can always come to us if you are feeling stressed or concerned about your condition.

 

[vanilla_chai]

thanks

thanks for the reply

I do eat minimal solids at this point and what produce I eat goes through the juicer. Today I juiced an apple, 2 carrots and 2 cups of kale for breakfast, had 2oz of chicken breast and a piece of gf toast for lunch and I just blended a banana, 1 scoop of protein powder and 2 tbsp of peanut butter. That's pretty normal, some days when I'm feeling better I'll eat gf noodles cooked in broth with chicken breast and add some cheese. (gluten bothers me, dairy doesn't)

but I guess what's whats weird is in the past I've had some crazy pain - hurts to walk, hurts to sit - and my sed and crp were high (22sed and 30.2crp). Now I have occasional mild pain and my sed was something like 2 and crp 0.7 - based on before and after I'd guess I don't have much inflammation going on. I would swear I was in remission if I didn't have all the problems with appetite/nausea/exhaustion.

I can usually point to something I ate weird or a stress before the blockage pain, but what really worries me is the suddenness of it all. I would have told you before both the recent bad times that I felt great.

I guess the only thing to do is wait to see what the dr thinks. I really hope I can move past this stage. I am really happy to not need surgery, just really fearful that it won't get better, and even more scared to get pregnant and have another blockage....

thanks again, its nice to be able to talk it out, hopefully it will make me a more coherent patient when I do get to see the dr.

 

[EricM]

Sounds familier

The bulk of my symptoms are exactly what you explained. Whenever I have a "flair up" it is because everything stops and it comes on without much warning. I can feel it coming on and within 2-3 hours I'll be rolling on the floor. I have gone to the ER a few times when it gets really bad for pain meds and fluids and CT scans or x-ray's show no stricture but a lot of backup. About a year ago I was admitted to the hospital for 4 days. Other than that it all goes down every couple of months and I just have to wait it out like you said. Almost all of the times this happens it's 3-5 days after my Remicaid infusion. I asked my Dr. about this and he suggested that the Remicaid relieves the inflammation and anything that has backed up starts flowing and causes the tension or blockage.

After my last hospitalization I started taking Mirilax at least once a week. If I have something with a lot of fiber or a steak or something I take Mirilax right after and every day for the next couple of days. If I feel a blockage coming on I take Mirilax right away, something to brace myself for the pain (depending on what my gut says I take extra strength tylonol or percocet), and a gas-x. The gas-x was a recent discovery that has helped a lot. I get really burpy since the gas can't go the other way... Also I don't eat anything until I can tell things are clearing up then stay on clear liquids until I feel the tension die down--sometimes for a couple of days. This regimen has been pretty effective in keeping me out of the hospital/ER and in minimizing the pain.

If your Dr. bumps your Remicaid up I'd be interested to know if that helps. I have been debating if that is the right thing to do. Right now I'm getting 5mg/kg every 6 weeks and am not too thrilled at the idea of upping it.

 

[vanilla_chai]

I am at 10mg/kg every 8 weeks as off my last dose. That is crazy it happens for you pretty consistently after remicade. I saw my dr last week and the MRE wasn't exactly clear - just inconclusive, story of my life... much of the signs looked better - free fluid had cleared up and the bowel was only slightly malrotated if I understand correctly. He said if my illeum had totally opened up the radiologist wouldn't have been hedging but if i was really scarred they'd expect to see ballooning before the stricture. He said normally he would just wait and see how it goes but since I'm looking to get pregnant he's going to have me do a pill cam to be sure.

My last GI had offered to bump my remicade the last few doses before the hospital bc I'd had mild blockage pains the week or 2 before my infusions that I'd dealt with by not eating till it went away. I hadn't wanted to go up either, mainly bc once you're up you're staying there. Its always such a hard call. good luck with that decision

a similar but totally different set of symptoms, I've had what I'm guessing is something like a stool blockage periodically over the years, way before I had any other symptoms. it seems that I get constipated and then my body decides to rapidly move the stuff I'd just eaten but it can't because nothing is moving. I get so painfully gurgly and have often felt like I was going to pass out. Just recently I've found that when I notice that starting I just need to park my self in the bathroom for an hour or so. That's always great when I'm at work... but I know ignoring it will just make things so much worse

I'll try to post back if anything changes. I just worked a crazy week and didn't get my typical day of sleep last weekend and my body didn't misbehave too badly, even with all the caffeine and energy drinks. that's always encouraging