Vomiting and diarrhea for no reason... adhesions? obstructions?

[littlemama1]

hi all,

this is my first post here. It's been a loooong time since I've posted in an IBD forum. I was diagnosed with severe UC in 2001 at 17, had a colectomy within the year, and had a sucky j-pouch that I quickly decided wasn't worth it. I am now 30 and have been living with an ostomy for 11 years. I am lucky to have had a pretty normal life since then with only a few digestive issues here and there.

For the last six months or so, I've been having these "episodes" of excessive ostomy output + vomiting once or twice a month. I sometimes have crampy pain, but it's mild to moderate. It goes on for 4-8 hours then stops and I'm OK the next day. I can't pinpoint an obvious reason for them happening- no unusual food, my husband doesn't get sick, etc. At the beginning of the month I had my worst episode yet, I puked for 6 hours until I couldn't stand up without nearly passing out and capitulated and went to ER. They just treated me for dehydration and did not run any tests. My only theory for why this is happening is that perhaps it was a partial obstruction or kink in my intestine from adhesions from my 5 major operations.

I made an appointment with a GI for the first time in a decade... he only treats IBD patients and is at a top 10 academic hospital. He said he definitely did not think it was partial obstructions or adhesions, and said he thinks I have abdominal migraines. I really don't get it... the hallmark symptom of abdominal migraines is severe pain, with a few people experiencing nausea or diarrhea... I am having a hard time buying that because I don't have severe pain. Maybe this guy just has no idea what my problem is and just thought I'd feel better if I could give it a name :/ He said he will prescribe migraine medicine and I'll give it a shot when he does, but as of now I'm unconvinced.

He ordered a small bowel follow though, which I had this morning and the radiology resident told me the preliminary results were that I was fine. I have an ileoscopy next week.

If you made it through all that... first, thank you for reading. Has anyone had anything like this happen? Do you have any other ideas of what it could be or what I could do? At this point I kind of feel like a freak of nature- I'm not sure I fit in with IBD forums because I don't have active disease anymore, but I don't feel like I fit in with the UOAA forum because it seemed to be mostly newbie ostomates and cancer survivors.

thanks again

 

[Jennifer]

Hi littlemama1 and welcome to the forum!

Thankfully your GI is at least running tests to see what's really going on. If neither test shows anything then ask your GI about doing a CT scan or an MRI. I'm surprised that the ER doctors didn't do any tests at all. I'm sorry you had to deal with their incompetence.

I've never heard of abdominal migraines before but based off your past history it may very well be a stricture somewhere so going through a battery of tests is the first step. If it is a stricture then eating smaller meals more often may help. As for what to eat in general, that I'm not too sure about since you have a stoma but generally soft foods that are easy to digest are the way to go with strictures. If you start getting nauseous again then you may want to switch to a liquid diet. If you can't even hold down liquids then it's time to call the doctor again if not go to the ER.

We have a stoma subforum here: http://www.crohnsforum.com/forumdisplay.php?f=46
While we do have new ostomy members in there, we also have a fair share of vets as well so it's a great place for more information. In case your issue is related to your stoma I'm going to tag Nyx, annawato, Absentminded, PsychoJane and Pointy_ears. Any help is appreciated guys.

 

[Absentminded]

Hi,

I don't really have any advice or input as this isn't something I've experienced or know about. You've had a Stoma a lot longer than I had mine so could probably teach me a lot!
I do have a friend off of the forum who has had her ileostomy for over 15 years so I might ask her opinion if that's ok?

The only idea that I have is as Jennifer suggested, that you may have some structuring going on. Any larger bits of food get backed up causing the cramping and vomiting and the more liquid output gets through around it. Eventually the larger bits pass and the symptoms go away. Does that sound possible??

An MRI or CT would show up any narrowings, so maybe request one of them.

Sorry I haven't been much use! I wish you the very best with it all.

 

[littlemama1]

thank you for the replies. I really thought it was a stricture or adhesions, but they called with my small bowel follow-though results today and I am officially normal. Is it possible that something like a stricture would be missed on a small bowel follow-though but show up on a CT or MRI? I'm having an ileoscopy next week, but I don't expect that to show anything. I believe he ordered that just to check for Crohn's since I haven't been to a GI doctor in so long, but neither of us felt my symptoms matched a new Crohn's diagnosis.

I just don't know what else to think. I will try to adjust my diet, or at least try to make note of what I've eaten before it happens. I am trying to wrap my head around the possibility that they won't find what is causing it and I just have to live with it.

 

[Jennifer]

It is possible for a stricture to not show up in a small bowel follow through. I had one that showed nothing, everything was normal. Less than 2 months later I was hospitalized for an obstruction which was found with a CT scan. About 3 months after the obstruction I had an MRE (Magnetic Resonance Enterography similar to an MRI but more sensative) done and it didn't show anything, it didn't even pick up the scar tissue from my previous resection.

Scars shrink over time so if you've had surgery already, the scars could cause problems later on. Inflammation around the surrounding scar tissue will make things worse but the scar tissue alone is enough to cause problems in the future. If it is scarring that's causing the problem, talk to your doctor about the possibility of balloon dilation or a strictureplasty rather than doing another resection if it's needed.

 

[UnXmas]

What kind of stoma do you have? The symptoms sound quite like mine are when my ileostomy becomes partially blocked. The blockages I had resolved on their own (though I did see a doctor during one episode who confirmed that's what was happening), so I guess it's possible that you're having partial blockages that are resolving themselves. What is you diet like, have you changed it recently? Or do you eat foods that could cause blockages that perhaps for some reason you used to be able to tolerate but now can't?

I'm really wary about self-diagnosing though (or in this case me diagnosing you ). I think it's difficult to speculate on something like this - and I think your GI is guilty of doing that also. I have heard of abdominal migraines, and they seem along the lines of an IBS diagnosis - they cover a load of vague symptoms and are kind of a cop-out doctors use. It's a good sign that your doctor is ordering more tests though, and I hope he'll be willing to revise his first opinion if necessary. It seems odd to suggest the diagnosis of migraine based which is based on symptoms, not tests, when you're not even having the typical symptoms of that condition!

As for managing symptoms, there are foods that slow ostomy output down (let me know if you'd like a list of suggestions) and meds like loperamide and codeine can slow it down also, but it's not wise to take them until you're sure of the cause, as they'll make a blockage or obstruction worse (and I suspect that includes if you do have a stricture).

What makes you think it's a stricture or adhesions?

 

[littlemama1]

Thank you for your reply UnXmas! You managed to put into words better than I could why I'm hesitant about the abdominal migraine diagnosis.

I have an ileostomy. I did have a period about 9 or 10 years ago where I had a stricture in my stoma and had many stoma obstructions, so I know what that feels like. My symptoms with that were intense and worsening crampy pain at the stoma and profuse liquid output around the obstruction (I guess I never had a complete obstruction). I had it explained to me once by a medical professional that sometimes the body deals with an obstruction by drawing fluid into the gut in an attempt to flush it out, which kinda goes against most of the information on them that says you will have reduced or no output.

My theory that it is adhesions/partial obstructions is total conjecture, but I just don't know what else to think. I have a dear friend who is a fellow ileostomate and a doctor (internal medicine) who endured partial obstructions and very slow transit time and nausea caused by excessive adhesions and she also suggested that it could be what is causing this. I know I don't fit all the symptoms of partial obstructions though (I don't have severe localized pain).

I really eat a pretty boring, repetitive diet these days as my husband works 80+ hours a week these days and I spend all my evenings hanging out with my toddler who goes to bed at 7. Almost all our food is prepared at home. The first few times it happened I passed it off as gastroenteritis, but when it kept happening with neither my husband or my daughter becoming sick, I felt like it had to be something else.

I guess there's the possibility that I'm just really unlucky with GI bugs. Or that I'm just a freak of nature and no cause will be found.

 

[MicheleM]

The ileoscopy will let the doctor see if there is any scar tissue or inflammation, in the portion of bowel he can get to. My doctor saw about 2 feet of bowel in my latest ileoscopy. (Kind of happy I have an ileostomy so he could get a look!) I had my stoma surgery over 30 years ago due to an UC diagnosis. After 14 years, I had a blockage episode. They thought is was adhesions, so did a resection, removed adhesions and gave me a new stoma. I have had intermittent partial blockages (1 or 2 a year) for several years. I now have an official diagnosis of Crohn's, especially once the doctor was able to do the scope and see the inside of my intestine. Xrays, MRI and CT were not definitive. They say it was probably Crohn's all along, not UC. I hope the docs will come to a conclusive diagnosis for you. Keep us posted!

As for food, when in a pain-diarrhea crisis, I'd recommend staying on liquids with an eye to staying hydrated. Chicken and beef broth, Ensure, gatorade. Boring, but when you're sick, you don't feel like eating much more. Take care.