Crohn's Disease Forum » Your Story » Frustrated with non-typical symptoms and complications


05-16-2014, 09:04 PM   #1
Nancye50
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Frustrated with non-typical symptoms and complications

Ugh! I was diagnosed in early feb. I'm 38. I don't have much diarrhea and I'm slightly overweight.
I had a perforation, abscesses that healed and now a fistula to appendix. I have general pain, esp lower right.
I'm sticking to a mostly low-residue diet, definitely no salads or raw produce (have been juicing), have seemed to be fine with beer and soda, have taken it easy on exercise but have been supremely stressed.
I've been on Imuran for about 6 weeks & am switching to Humira now that the fistula has been discovered.
Here's the thing, I can't figure out which foods or circumstances trigger pain or increased problems. I think it's mostly stress (traveling across the country to find a new house, twice, selling a house, etc).
Does this sound familiar to anyone else?
I know I'm new to this but it seems like so many of you have a better handle on reading your body's response to meds and foods.
I was keeping a journal but it was making me crazy (esp while still on pred so I was already crazy).
Any advice?
05-16-2014, 09:20 PM   #2
theOcean
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It definitely sounds familiar to me. I have a peri-anal fistula that's finally starting to close after all this time. It may have been that you just weren't on the right medication for you, that you didn't get to treating things fast enough...

Figuring out how your body reacts to things definitely takes time. A lot of people recommend going on the FODMAP diet and then trying to reintroduce things and see how your body reacts, or just doing elimination diet. Most of the common things seem to be lactose, gluten, and high fibre foods (during flare). I'm even sensitive to red meat and can't really eat that anymore.

It's also difficult to keep a diary of things unless you know how quickly your body processes things, too. I know it takes two days for things to get through my system, so I can directly see how what I eat has impacted how my body behaves. That's kind of difficult to track unless you're eating a lot of insoluble fibre, though.

Just try cutting out certain categories of food for a week or two at a time, maybe, and then reintroducing them. If you find you're feeling worse when you do, that's a food to eliminate.

You could also maybe keep a food diary on here in the forum, if that would somehow make you feel less crazy about it. I know it's nice to report somewhere, and then you can present it to other people and not just have everything bouncing around in your head.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-16-2014, 10:13 PM   #3
Nancye50
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Thanks theOcean. I really appreciate all of your support during g my especially needy week.
Curious as to why you suggested the FODMAP diet over SCD. My doc said "no drastic diets, no drastic weight loss" in the beginning but he doesn't seem too concerned now.
Seems like I hear more about SCD in relation to Crohn's & associate FODMAP with IBS.

I'm really embarrassed to admit this but I really want to be able to drink alcohol over the next few weeks before we leave. People are planning parties and inviting us to all kinds of things. Like I said, I think I do okay with beer but that seems very counter intuitive so I worry that I'm just not being honest with myself!
05-17-2014, 02:25 AM   #4
theOcean
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Honestly, I never did any specific diet myself. I just avoided fibre when I was in flare, and avoided foods that I recognized as specific "trigger foods". I also realized I was lactose-intolerant sometime after being diagnosed, and cut out lactose. I definitely wouldn't do any dieting to lose weight -- Crohn's has seen I don't need much help with that. FODMAP strikes me more as being a diet to eliminate things which could potentially trigger someone with Crohn's, but seems a bit too drastic (at least in terms of cutting out gluten, because I love gluten and it personally doesn't bother me).

I've spoken to nutritionists and dietitians, and even my own GI -- and no one really believes in SCD that I've spoken to, and mostly what I've been told is that the diet for Crohn's is "consistently inconsistent" and that you basically can eat whatever you can handle that day, depending on how your body is doing.

And you really do need to be honest with yourself! When I was sick I couldn't tolerate alcohol at all -- I would feel it the moment it hit my stomach and I would have to run to the washroom, it was terrible. So: just try to do what your body is okay with. Don't push it, it will probably not be worth it.
05-17-2014, 03:11 AM   #5
Daisy123
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The only diet that has ever helped me is the low residue diet, which sucks because it is horribly unhealthy. But, I only use this when I have strictures because it stops me having obstructions. I have been to a dietician but it didn't help. My GI is a nutrional specialist but specific diets have not been mentioned. I can eat anything when not in a flare, and for me it is stress that triggers the illness. My best advice would be to try and relax. I had acupuncture which was good.
05-17-2014, 07:32 AM   #6
Nancye50
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I think stress is my worst trigger and I don't know how to decrease that right now with moving. I haven't gone to yoga in a while. I felt like it was too much bending and twisting & would have a yoga hangover the next day

Maybe acupuncture?
05-17-2014, 07:37 AM   #7
Daisy123
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Acupuncture is well a try. I had eight sessions and honestly believe it helped. I sometimes take Valium but not often.
05-17-2014, 11:18 AM   #8
theOcean
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I tried acupuncture for a bit... all it really did was drain me of money. It didn't help at all.
05-19-2014, 08:37 PM   #9
Nancye50
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I think I've found at least one pattern. Seems like I have an awful-awful day before my period starts. Today was that day and most other symptoms have subsided and left me with menstrual cramps.
It makes me wonder what my options are. I don't think I would tolerate ablation right now but would getting an iud be okay at this point? I'll prob call and ask my GI tomorrow. I've had one before and mistakenly had it taken out because I thought it was giving me migraines.
Any thoughts on IUD placement during an uncontrolled flare?
05-19-2014, 10:06 PM   #10
theOcean
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A number of people say that their IBD gets worse around the time they're menstruating, so that doesn't surprise me.

IUD I hear you can get really bad cramps from at first after it initially gets put in, but otherwise I hear people swear by them.

I'm on depo-provera and have been for over a year with no problems, and stopped getting my period completely because of it. No cramps, either! It's lovely, especially since I just get it as an injection once every three months.
05-19-2014, 11:38 PM   #11
Nancye50
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Thanks @theOcean. Once again!
So now I need to decide if I call the GI now to see what he says and try to get in with an OB/GYN or wait basically till fall after we have moved.
This is all so crazy to me! More than anything at this point, I'm sad that this is how I'm spending my last month here.
05-20-2014, 01:14 PM   #12
dhelman
 
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Stress is definitely the primary trigger for me, as well as certain foods. If you don't mind people touching you, I would recommend a massage. That always help me relax and de-stress which in turns helps with Crohn's. Also, I know it is really hard to force yourself to do it, especially when you are stressed and your willpower is drained, but I think that exercise really does help. If there is anyway you could force yourself to workout a bit, and then get a massage, that would be ideal in my opinion.
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