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UC, Chron's, IBS or something else?

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Crohn's Disease
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Posted 2/1/2021 7:59 AM (GMT -7)
Hi Everyone, First time poster here but desperate need of some opinions and outside help. I will try to make this as short as possible but the back story is necessary.

I am 28, female with stomach issues my entire life. When I was in HS I was told my stomach was cause of anxiety, then In my early 20's I was told I had IBS with no hope of what to do. I have seen multiple Gasto dr's and truly lost hope in them years ago for their lack of concern and assistance. In the past my issues were bloating and constipation. I would go days without using the bathroom and go up in pant sizes from bloating but always suffered from terrible gas.

In the beginning of 2020, I went to a naturopath for help with losing my hair. At this point I had lost hope in "tradition medicine and Drs". I would say this was June time, The naturopath started me on supplements and ordered for blood tests to see why this was happening. by august I was on a few different supplements, nothing crazy, vitamin D, C, a multivitamin, omega etc. My stomach went out of control, I started to have diarrhea for weeks straight, basically unable to hold it and everything started to bother me.

Now, Feb 1st of 2021 I am worse than I was still incredibly struggling. My naturopath got tons of tests, turns out I have Chron's so she believes. I am sensitive to Wheat, Soy, Yeast and dairy. We also checked for parasites and there is nothing. I now have limited my supplements to the necessities. I take activated charcoal, a digestive enzyme, my fish oil, a probiotic, oil of oregano magnesium and some others I cannot remember. I have not stopped having flare ups they're turning into a monthly occurrence, basically 1x a month I have a flare up for 2 weeks if not more.

This week I am going on maybe three weeks. i am so uncomfortable from pain basically everywhere and bloating. Diarrhea is horrible and happening between 4-6 a day. I eat and immediately have to go to the bathroom. It's like my body is purging everything as quickly as possible. I am constantly starving, wanted huge hearty meals because I have nothing in my body, I am nauseous, I can't sleep because the stomach pains are just uncomfortable. I am really feeling hopeless, I don't know If i am focusing on my wrong things, I would really like some opinions from others. I am at a loss, nothing is helping. Please ask any questions, I will try to answer as best as possible and of course please be kind and respectful.


I made some paragraphs in your post to make it esier to read.

Post Edited By Moderator (straydog) : 2/1/2021 8:39:02 AM (GMT-7)

Posted 2/1/2021 9:08 AM (GMT -7)
Hi Curlymom, first let me say neither crohns disease or UC is diagnosed based on a lab test, it's not that simple. I know you are disgusted with medical drs, but your naturpath is incorrect. The symptoms you have described are typical for IBS. Although you were tested for parasites, a complete stool panel should be done to rule out infections & other pathogens.

The gold standard for testing is upper & lower scopes with biopsy's taken which can be done at the same time. I don't know if you have ever had these done but this is where to start. Look for an IBD specialty group in your area. More than likely your insurance will require a referral from a gp to see a gi dr.

My DIL suffered for years with IBS. Like you she suffered a lot & had episodes of constipation or diarrhea. She always paid a lot of attention to her diet. She had both scopes done & was cleared of IBD's. She finally kept a food diary & found what foods were her triggers. Yes, it was a slog, however, she was able to pin down what foods to avoid. She also consulted with a nutritionist that was helpful & found an IBS friendly diet on the net. It took a lot of time & effort on her part but it paid off. We have to keep in mind when drs go to medical school they are taught about diseases, conditions & medications used to treat. They are not taught about diets.

As long as you have been having issues it would be reasonable to ask for a referral to a gi & ask for scopes.

Take care.
Posted 2/1/2021 10:34 AM (GMT -7)
Thanks for your input, I have had complete stool panel and ruled out infections, pathogens, and parasites. I am thinking I need a colonoscopy.. I reached out to a GI as well.
Posted 2/1/2021 5:38 PM (GMT -7)
Hi Curlymom, and welcome to HW.

You are roughly my Daughters age, and even have similar symptoms. As @straydog mentioned you really are in need of the standard tests for Crohn's, which are upper and lowers scopes with biopsies. That's the only way to confirm/rule out Crohn's and UC.

If you do end up with a confirmed diagnosis, you'll really need to be on medication to get things under control, and then a transition to a maintenance med.

It's of utmost importance too that you get a really good GI that you have confidence in, and can trust. Without that, you will feel like you're getting a constant runaround. Try to emphasis this to your family Dr. so that your referral will be to a good one.

You certainly may not have IBD. There are numerous medical issues that mimic the very same symptoms as IBD. You might want to have a gluten sensitivity test to rule out Celiac. Food allergy test are a bit painstaking, but you could persue that as well. It could very well be IBS as mentioned.

If you do get a confirmed diagnosis. There's nothing wrong with persueing the holisitic approach, but I think most will tell you that it's just not enough.

Good luck going forward. Please keeps us updated. There is a lot of experience on this board. Keep asking questions. Hope you're feeling better soon.
Posted 2/1/2021 8:33 PM (GMT -7)
Start with stool tests for "occult blood" and "fecal calprotectin." A gastroenterologist will know those tests. If either is positive, a colonoscopy is appropriate.

You should also get blood tests done, the standard workup and include "crp" and "esr." Those will tell if there is inflammation going on somewhere in your body. They're often positive in Crohn's and negative if you don't have Crohn's (but not always, so they're only a piece of the puzzle and not a final answer).

An MRI of the small bowel might also be appropriate, depending on what the stool tests and colonoscopy findings are.

How did the doctors years ago diagnose you with IBS without doing a colonoscopy? IBS is generally diagnosed by ruling out all other causes. Without a colonoscopy, other causes couldn't have been ruled out.

As for the naturopath diagnosing you with wheat, soy, yeast, and dairy sensitivities, those tests can be and often are very misleading. False positives are VERY common. Don't feel like you have to remove those foods unless you find they truly bother you.
Posted 2/2/2021 7:19 AM (GMT -7)
Thank You, That is actually one of the reasons I stopped seeing the GI years ago honestly. I truly felt they were not taking me seriously and that saying i had IBS was just a way to get me out of their hair.
Posted 2/2/2021 7:22 AM (GMT -7)
Does anyone have any suggestions for what to do in the meantime to help relieve this pain and discomfort. I have tried everything I can think of heating pads, peppermint tea, bathes, IBgard, soup, taking a shower etc. My stomach is so extended and I am so uncomfortable right now.
Posted 2/2/2021 10:30 AM (GMT -7)
Do you keep a food journal? I do have clinically diagnosed Crohn's, along with a few bowel surgeries and my disease is NOT currently active and in full clinical remission.

I often have the same symptoms as you. And they are the WORST. Sorry it's happening to you. I also have IBS. I do keep a food journal and write down how I feel everyday. I did start noticing patterns of new food sensitivities. For instance, proteins. I'm an athlete and generally like to consume large amounts of protein and supplement with protein shakes. I had to stop. I just can't seem to breakdown the proteins anymore. I swell up like a balloon.

I've always benefited from the AIP or Auto Immune Protocol diet, to reset and figure out what I'm sensitive too. These things continue to change for me, particularly as I get older. I'm 45.

Just a thought!
Posted 2/2/2021 10:32 AM (GMT -7)
Some of those supplements are probably aggravating things more than they're helping. And I say that with all due respect to supplements and natural/Eastern treatments. My uncle is a doctor of Chinese medicine and an acupuncturist.

You might want to look into the Simple Carbohydrate Diet. It's had success for some people with IBD.
Posted 2/2/2021 10:55 AM (GMT -7)
Thank you, I do try to write down what I eat but it's so defeating because someone that is okay today will both me tomorrow and bounce back and forth. I did stop the supplements because I just could not fathom taking supplements while feeling so poor. I will look into the simple carb diet and Auto immune protocol.

I Should add too my main issue right now is I get so insanely hungry I feel nauseous, dizzy and light headed. Once I eat I feel better from those symptoms but my stomach obviously starts to hurt and I get bloated, then diarrhea.
Posted 2/2/2021 5:35 PM (GMT -7)
I would recommend that you try a low residue diet at this point. It's a very common dietary approach for those awaiting a diagnosis. It's not a very healthy approach to eating, but it's mainly to help calm things down until you get on a treatment plan.
Posted 2/3/2021 7:04 AM (GMT -7)
I feel you. I can eat diary one day at one meal, but not more than one and not two days in a row. It's super frustrating. But if you keep at it and keep recording it, you will find a pattern. I would avoid eating out, while you figure it out, so you know everything going in to your food. I eat red meat and if I cook my steak at home, no issue. If I eat a steak out... I'm RUNNING to the toilet (I cook in grass fed butter or coconut oil only and try to stick with only salt and pepper). It sucks, but if you can stay with it and figure it out, it won't be forever. And those diets aren't meant to be forever. Often, they are there to help you learn how to eat for your body. YOUR body, it's different for everyone, disease or not.
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