GI roulette

Last Saturday, my gut did one of its every so often tantrums where anything I put into it resulted in agonizing cramps.  I spent a lot of quality time with the toilet Saturday.  Meds?  Well, I think I took triple my usual dosage on the Levsin and it did eventually quiet down.  Then Wednesday night it was in an uproar again.  And then last night.  Last night was pretty bad.  It’s rare that my gut will continue with a tantrum if I have managed to fall asleep, but last night that is exactly what it did.  I was up and down all night.  It was a strange experience which seemed to combine the worst of the two classes of bad GI behaviors I’ve experienced in my life.  Pattern 1:  When I was younger, I used to have these episodes about 4 times a year.  They were very isolated and usually in the evening, after eating something that didn’t agree with my gut (too much lactose, for example).  Pattern 2:  Since 2004, the pattern became having cramps, spasms, urgency, and frequency after anything I ate.  I managed to whittle that down to just eating in the morning.  If I didn’t eat in the AM, it’s like I could let my gut wake up, I could pre-medicate and then eat starting in early afternoon through dinner without too much of a problem.  I was able to put back on the 20 plus pounds I had lost in short order and generally, as long as I don’t eat too early, I have been able to manage for a few years now without needing to medicate prior to eating.  And now we have pattern 3, which has manifested three times in one week.   This new twist is that I can eat during the day (starting late, as dictated by pattern 2), but then something happens in the evening and blam – it’s going full tilt into my old pattern 1 episodes but more frequent that a few times a year.  And as with the pattern 2 (and unlike pattern 1), with this new pattern, medication is not going to stop it once it starts, sleep is not going to stop it. What’s going to stop it is, it feels like, for my gut to basically purge most of whatever was in it.

Last night, around 4 AM when I was up for the 6th?  7th? time, I started cataloging precipitating factors.  Not blood sugar, I’ve checked in during these three recent episodes and it’s fine.  High 80s to low 110s.  It got low last weekend after several hours of being up and avoiding food on account of the upset gut, but I think that the cause of the sugar was the gut induced fasting through a time when I would normally have eaten, not the other way around.

I did eat a lot yesterday, a lot for me.  What did I eat?  What else?  Did I take anything?  Did I experience anything that was common also to last Saturday and Wednesday?  Here’s what I’ve come up with.

  • A new snack my husband and I have been eating for about 2 weeks is whole wheat english muffins with butter and jelly.  My preference is for blueberry jelly.  I had several of them last weekend, several this weekend, and may have had some Tuesday night (didn’t have any Wednesday but I know my gut well enough to know that the cause needn’t be all that proximal).  I know I cannot eat oatmeal anymore without triggering gut wrenching guts, maybe I need to avoid whole wheat items too?  Maybe it was the butter?  The jelly?  All of the above?
  • Cider.  I’ve been drinking a lot of hot apple cider for a while now.  I drink it in the evenings.  I didn’t have it last Saturday AM but certainly had it Friday night.  Didn’t have it Wednesday night because I was already sick by the time I got home, but had it Tuesday.  And I had quite a bit last night.
  • Advil.  I had PT Tuesday.  I was in pain Wednesday.  I took Advil several times throughout the day and specifically remember taking one and a 325 MG Tylenol a few hours before Wednesday night’s gut episode.  Yesterday, I pulled something showering in the evening and took two Advil a few hours prior to the gut stuff starting.
  • Then there’s another interesting possibility.  I took Advil for a reason.  That reason was pelvic, sacral, and hip pain.  It feels very connective tissue-y.  It’s positional, quick or poorly executed movements set it off and exacerbate it.  So I really don’t think it’s GI, or GYN caused pain.  So let’s say it’s skeleto-muscular pain.  Is it possible that whatever I am doing skeletomuscularly, which is causing pelvic girdle pain, is also causing bowel spams?

Could be any of these.  Could be all of these. Could be none of these.  I can’t stop the skeletomuscular pain, and in fact I’ve had that pain without having gut issues in the past so I’m going to tentatively rule that out.  I do not always medicate for the pelvic/hip/sacral pain though, so possibly the Advil.  My primary mentioned something about this in a recent appointment.  “Do you think it could be the ibuprofen?”  “No, well I don’t know…why would it be?”  “Are you sensitive to aspirin?” “Oh god, I don’t know.  I haven’t taken it in so long because of the gastritis….”  “You should get tested for that”.  He even wrote it on a list of things he wanted me to ask about next time I was feeling up for some more allergy testing.  Ok, so possibly Advil.  I will avoid it for a few weeks, tylenol instead.  The english muffin, butter, and jelly combo and the cider are also easy enough to avoid.  So we will see if I can figure this out.  I want very much to.  This can’t be a new thing that my body’s going to do several times a week.  It’s debilitating, I was so late for work on Thursday since I was up super late with the gut Wednesday night.  My last minute christmas errands for today have taken a back seat to the new plan of sitting quietly at home trying to rehydrate and largely fasting until the late afternoon since I can tell if I put anything more substantial than liquid in my gut right now, it’ll be back to the potty for me.  If I’m feeling spry, I may try to make some chicken soup.

Wish me luck in figuring this out.

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  1. Medical Mojave

     /  December 25, 2012

    Start with the wheat, at least I would. That stuff is a problem for a lot of people. It is, however, difficult to completely route it. Hope you feel better. (Irony: I’m eating cookies as I type this hoping to trigger the wheat symptoms for a doc visit.)

  2. My daughter has been mentioning sudden “crippling” bowel symptoms. It happened again this week during a trip to Montreal – she was sitting and whispering to me about it – she was secretly hoping it would pass before anyone would notice. Her question was “what did I just do to make this happen?”. Reading your posts helps me with “what can be expected” as she is very quiet about her daily “disturbances”. On the way to the City, she went to a public bathroom and after waiting for her for an usual length of time, I got worried and went in to see if she had collapsed or lost consciousness. But no, she had been trying to go to the bathroom but was unable to crouch. When I asked her how long that had been going on for, she said “for at least 6 months now”. I really wish she would speak up to see how we can help her. Her hips pop really loud and she is in a considerable amount of pain.

  3. Not much use for the public restrooms, but when I’m at home, I found a step for my feet is helpful for when I need to be on the toilet for a length of time. I discovered this when living at my last residence. The toilet was ridiculously (for me anyhow) high. I got one of those four legged step things (the ones with the long waist high handles) and keep it in the bathroom now. It helps to put my feet up on it so I don’t hurt my legs when I’m on the toilet. A stack of books would work in a pinch, that’s what I was doing before I finally broke down and bought the step thing. The step thing isn’t cheap but a good investment for when I’m having a lot of hip pain and need help getting in and out of the shower. I’ve still yet to find a GI doc who is knowledgeable about the implications of connective tissue disease for bowel function. Granted, I haven’t been looking long but so far, the response from my soon to be ex GI doc was not encouraging. I’m really malnourished, my hair is falling out. Delightful! But not a one of my GI docs over the last 8 years has considered dietary supplements, which sucks because I could use some help with finding one that is non-dairy.

    I can understand your daughter not mentioning it. It’s tough that she keeps it to herself but it’s embarrassing. It’s only been in the last ten years that I’ve been ok talking about it. You sort of have to stop being shy about it at a certain point. But at her age, oof, I would have rather died. The meds can help, not all of them but maybe she can try the levsin if it’s not contraindicated for her. Do you guys have a decent doc you can talk to about this? I had a friend in grad school with IBD and he and I used to swap ’em. We’d lurk outside each other’s labs like we were planning a drug deal. “Dude, you got any levsin SL?” LOL. Even he was shy talking about the details though. I’ve been considering starting a support group on my campus for kids who have these sorts of medical problems, the grinding, eroding, life stealing, invisible ones. I remember how tough it was in college…I feel like there are some kids who would benefit from sharing experiences, tips, ideas, feelings. I’ll have to approach the counseling folks to see what they think but I think it would be helpful.

  4. About a doctor, I found the diagnosis myself and our family doctor nearly hugged me. Now, she’s (Geneviève) been referred to the (apparently only one) connective tissue disorder clinic in Canada which (luckily) is in Halifax. It is managed by a cardiologist with an amazing reputation in the field. Her name is Gabrielle Horne. She should be seeing my daughter in the near future. I am very hopeful. Last week, we had our first appointment with a physiotherapist who was brilliant. Before receiving us, she made sure she knew of the condition and what she was suppose to do. It was simply amazing. She spent an hour talking with my daughter, checking the blue mottling of the skin of her legs and waiting for the right time to make her stand. She only evaluated her at a physical level for a few minutes – saying it would be inconclusive to go any further because of the blood pressure problem and the pain. She gave her very gentle and useful tricks to raise the blood pressure as a start to help her stand. She said it would be a very slow process, adapted to get Genevieve’s need and to help her gain the ability to move again. My daughter has been lying down for too long now…

    On another note, I totally agree with the shame or embarrassment that comes with such a condition especially in young teenage girls. So, I like you I have thought of starting some sort of support group or site for kids with the illness. I’ve asked my daughter if she wanted to get involved and that would be really cool. I don’t know how many parent’s I’ve crossed over the year with children who were always feeling out of energy and ill, who at the same time had white milky skin and hyper elastic joints… I see them all around. This is not as rare as it is thought to be. We need to raise awareness and end a taxing part of the suffering caused by ignorance.

    Thank you for your useful comments. 🙂


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