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05-02-2015, 09:01 PM   #1
sweetiepoo
 
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Does this sound like Crohn's?


Hi everyone!

Here is my story. Be warned, some of this may be TMI! I want to apologize in advance, but I feel like the details give more of an idea of whats going on. Sorry this story is so long!

I was diagnosed with IBS when I was 15. It began with severe constipation, bloating up and looking several months pregnant, sharp pains in my sides, hemorrhoids, anal fissures, severe headaches, getting sick all the time with colds and fevers, ear infections, stye infections, UTIs, generally run down immune system, extreme fatigue no matter how much I slept, etc. I had to start wearing baggy big shirts to hide my swollen belly and still do to this day.

The GI doc refused to give me a colonoscopy, told me I had chronic constipation/IBS and sent me home with amitiza which made me even more light headed so I stopped taking it. After trying several stool softners and laxatives that didn't work, and drinking oceans of water on a daily basis, I gave coffee enemas a try and stuck with those for 5 years. They worked great while it lasted and helped greatly with the fatigue. (I tried fiber, but found it felt like pouring cement into my intestines. Just bloated up even more with lovely stabbing pain in my sides.)

At 18 years old, the enemas slowly stopped working. The coffee that went in would barely come out, but I still didn't want laxatives because they made me nauseous and hardly ever worked even with a triple or quadrupled dose. One day, I had a BM and the entire toilet bowl was filled with bright red blood. I was scared and didn't have health insurance. (No parental support either.) All I could do was pray for it to get better. Fortunately, it was about a year before it happened again.

At 20 years old the symptoms continued to worsen. Skin rashes appeared all over my back, neck, and chest that looked like pimples. They would itch, bleed, and scab over. Fatigue increased. No amount of sleep was ever enough. My hair was thinning and falling out in small bundles. I became so forgetful I had difficulty remembering the names of my coworkers whom I saw on a daily basis. My roommate at the time suggested a gluten intolerance may be to blame. I religiously started following a gluten free diet after much careful consideration and research. The enemas still continued to be less and less effective, although I felt slightly less constipated and sleepy after beginning the diet.

I finally decided to see a naturopath Dr. and saved as much money as a 20 year old could scrap up. At this point, I had lost my faith in western medicine. The Dr. made me do a blood lab for vitamin deficiencies and food allergies, as well as my thyroid. I had a whopping 15 food allergies, was B-12, magnesium, and vitamin D deficient. Oddly enough, my thyroid was fine according to the test. Taking the right supplements and going off the irritating foods resulted in dramatic improvement. I was able to stop enemas, but still needed laxatives. (The laxatives no longer made me nauseous. Not sure why.) I could not afford to continue seeing the Dr. anymore, but I got really far on what little help I received.

Last year I saw an acupuncturist. Under his care, I was able to reintroduce the offensive foods back into my diet without aggravating my symptoms. I never got over the bowel problems, but foods ceased to aggravate them. I still have continued to have blood in my stools about every 6 months give or take. Of course, I could not afford more than a few sessions since I was paying out of pocket and the insurance I have now won't pay for him.

Over the last 4 months or so, I have felt myself slowly relapsing into old symptoms. My fatigue is back and so are the rashes, pain in my addomen, and headaches. Now instead of just constipation, I alternate between constipation and diarrhea. I wake up each morning, not knowing what kind of day it will be. Sometimes I wake up in the middle of the night sick to my stomach and feel the need to use the bathroom, but when I go barely anything comes out. I can be up all night running back and forth between bed and the toilet. Those nights make me give up on sleep.

I've hardly eaten anything but small handfuls of solid food and have been drinking nice veggie filled organic smoothies for the last 3 days. I can't handle eating much right now. What goes in doesn't want to come out or if it does, its a stampede. At least doing mostly liquids has reduced the pain in my abdomen, back, and the headaches have let up whereas before they were literally 24 hours a day and taking 3 ibuprofen was a joke. (I also was just diagnosed a few days ago with possibly the worst UTI in my life, and I have had several.)

I recently did a blood lab wherein I was tested for several different issues. My Dr. thinks I might have Crohn's because my blood test results have come back with slightly higher than normal igg and iga levels. I have an appointment with a GI Dr. at the end of the month. I am going to beg for an endoscopy. I just need to know what's wrong with me.
So what do you all think? Sound like Crohn's or something entirely different? I feel like my symptoms are atypical to Crohn's because I tend towards constipation or just mild diarrhea, (7-10 BMs on a bad day). Just wish I knew what was going on. I've been in and out of urgent care and Dr.'s offices for the last 10 years!

Thanks for reading this really long story! Your support is appreciated.
05-03-2015, 03:45 AM   #2
POTTYTIME!
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Sweetie,

My opinion, if my GI would not do what I ask for I would find another doctor. On your bathroom troubles, walmart sales a natural stool softner. It is gentle enough for a Crohn's belly. "Senokot" is the name. Might be a good idea to be checked for a blockage.

Sorry I dont know what to tell you about the pain due to I have severe crohn's. My best friend is a heating pad on my belly.

Hope things get better for ya.
05-03-2015, 05:43 AM   #3
UnXmas
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I don't think anyone here can tell you more than you already know: you could have Crohn's but it would be atypical. The only way you'll find out is by going through tests, and more tests than an endoscopy may be necessary, just as there are many things besides Crohn's that could be causing your symptoms. To find out what's wrong, you really need to find a good doctor (a conventional doctor - I know it's hard to find a good one but they do exist) who will keep trying until you get some answers and some treatment.
05-03-2015, 06:58 AM   #4
JameyLynn
 
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Hello Sweetiepoo,

Very sorry to hear about all of your troubles. I think we can all relate to your symptoms at some level or another, and whether you have or haven't been diagnosed with an IBD you are not alone in this. I do have Crohn's, but keep in mind that this disease is not the same for everyone. What works well for me may not do a hoot for someone else. I can give you my two cents, and in doing so I hope that some things do work for you and you get some relief.

I am a 100% believer in that diet is the key to maintaining a balance. You absolutely may need medical intervention, but from a patient perspective what you put in your mouth may help or hinder. It sounds like the the naturopath you had diagnosed your food allergies, and when those items were removed from your diet there was a positive result. I think that after a time period, you said you reintroduced those foods again and it seemed that you were OK? In my experience, some foods cause immediate reactions and some foods take time to aggravate your guts. What I would like to know now is what is your current diet? Besides the veggie smoothies, what are you eating for solid foods?

This is what works for me when I have a flare which sounds to be what you are experiencing (bloating/pain/diarrhea/constipation/discomfort/sleepless nights/general lethargic feeling), again take it with a grain of salt:

1. Stop eating all foods until the B.M's stop or slow-down completely to give your guts a rest. Do keep drinking plenty of water, and if you absolutely need to eat something only eat a small amount of plain yogurt (organic if you can afford it) or drink kefir.
2. Yogurt, yogurt, yogurt (plain and natural, no fruity sugar-added stuff). This works miracles for me. My guts have proven to me that I lack the proper balance of good bacteria to keep my BM's to a manageable level, and to reduce bloating and further aggravation. I continue to eat only yogurt until I have small "solid" stools. (you will need to determine what solid is for you, some of us never attain solid).
3. Say goodbye to wheat and grains, maybe for good. Say goodbye to sugar while you're at it! Oh, and processed foods are the enemy. These are common triggers for a lot of people. Ever hear of "wheat-belly"? It's real.
4. Start to re-introduce natural unprocessed foods slowly again, don't overload with raw veggies and fruits right away as the high-fiber may cause you more problems. Eat eggs, yogurt, nuts, meats, hard cheeses (no creamy cheeses) veggies and fruits. Doesn't sound like a lot but you can eat a nice omelet, fruit salad, spinach/strawberry/walnut salad, have a steak and potato every now and then, fish and steamed veggies are yummy too, and make your smoothies with yogurt, experiment with nut flours for breads and muffins.

I know I've given you a lot of my opinions, and this isn't easy to follow but I would encourage you to try and see what happens. I have been medication free for 7-years since my last surgery partly because of how my Crohn's works and partly because I follow this routine every time I have flares. This may give you some relief, and you should continue to seek medical advice and treatment. My heart goes out to you, because I know living with this absolutely sucks some days.
05-03-2015, 07:52 AM   #5
sweetiepoo
 
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Thank you everyone for your encouraging and sympathetic replies. It is nice to not be taken seriously for a change.

I saw that first GI Dr. when I was 15 years old at the time. I wish I had begged my mom to see someone else rather than continuing to suffer for the last 10 years because it is clear I have not been properly diagnosed and IBS is a gross understatement of what I go through on a daily basis. I am older and wiser now and have found a wonderful Dr. who is compassionate and has really pulled out the stops to make sure I am getting sent where I need to go for further medical testing. (I am so thankful my job has started providing medical insurance!) I am glad this Dr. really listens to me. I will be getting 3 different ultrasounds next week all in the same sitting, checking for things like endometriosis, renal stones, or other abnormalities in my abdominal and pelvic region. My Dr. also told me to bring my blood lab results to the GI Dr. so he will be more willing to give me further testing.

JameyLynn, thank you for your advice. I am certain my diet and stress has much to do with the problems I am having now. Before this semester of college started, I was eating a couple servings of veggies on a daily basis, minimally processed foods, shopped organic, no red meat, no sodas or really sugary stuff, etc. , but since I have been under excessive amounts of stress I have not been doing a good job avoiding things like sugary carbs and microwavable foods. (I go to school full-time and work part time. It gets overwhelming.) I still never ever drink sugary sodas and never ever ever eat fast foods whatsoever and I am still eating organic. I also am in great shape physically since I do lots of yoga and work out 5 days a week. I am passionate about living the healthy organic lifestyle. Even my beauty products are organic! I just haven't been balancing my diet as well as I should. I have cut dairy out of my diet just in case, since I have read it can aggravate an irritated gut for some people, but I know everyone is an individual and this isn't true of everyone as you have been able to eat yogurt and improve. I am not sure if cutting dairy has helped me one way or another, but I am willing to try anything at this point. I take high quality probiotic capsules every day to get my fair share of live cultures in.

As for the bit on grains, processed foods, sugar, etc., I completely agree with you and I am considering cutting out the grains again or doing some kind of elimination diet or anti inflammatory diet. You are what you eat and I know first hand that the wrong foods can trigger a flare up. High fiber foods are terrible for me. I just get more crampy, gassy, and bloated whenever I eat them so I always check nutrition labels before I buy anything.

Pottytime, that is funny you mentioned senkonot since that is exactly what I take for constipation! Most other laxatives make me feel really nauseous.

Last edited by sweetiepoo; 05-03-2015 at 09:53 AM.
05-03-2015, 11:24 AM   #6
JameyLynn
 
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Glad you're keeping your spirits high Sweetie, don't give up. It will get better!

Again, my opinion - probiotic capsules are great for people that have balanced guts or have taken antibiotics recently and need to replenish. Not so for me. I consume mega yogurt when I'm in-flare, and I honestly do feel a difference quickly (within 24-48 hours). When I have pain and symptoms, I can eat a large container of yogurt before I go to bed, and wake up feeling better. On an average day, I eat a small bowl of yogurt plain in the morning with some fresh fruit, and I make sauces and dips with it as well. I use yogurt cheese (yogurt strained through cheese cloth) for a lot of recipes as well because it replaces cream cheese/ricotta in recipes. Many dairy products don't do well with my guts because of the lactose, hence the hard/firm cheeses and the yogurt. You mentioned UTI's, and with the meds that come with gut issues some are also hard on our female flora. Eating yogurt helps with this as well, and though your capsules have many millions or trillions of bacteria I honestly don't get the same relief relative to my symptoms.

It is hard to eat healthy some days or weeks, it takes time and effort and we all take a short-cut now and then. I would recommend that you think of trying yogurt to see if you feel any different and if you're feeling bloated give it a try. Some commercial yogurts don't work the same as the stuff I make myself at home (you can purchase a starter at a health food store). I have found that Liberte yogurt is the best commercial brand for me.

Anyways, enough ranting for me...outside I go to get some Vitamin-D!
05-03-2015, 03:37 PM   #7
Beach bum
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Hiya, I have crohns and have always been a once a day person, with occasional bouts of constipation. So there is not standard that says you have to have diarrhea all the time or anything.To be honest 7-10 BMs doesn't sound very mild to me.
I was also told that waking up to go to the loo is a big indication that something is not right.
I would echo the others saying to try a probiotic. I always take one and am currently looking into goats milk kefir as well. There seems to be alot of studies at the moment showing unhealthy gut bacteria has a link to lots of illnesses , so it really cant hurt to keep it healthy.
I would also recommend that you stop taking ibuprofen it is not good for delicate tums. And finally ,it might be worth looking into juicing rather than smoothies as this takes out all of the possibly troublesome fiber.

Good luck with your appointment.
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Crohn's Diagnosed : 12/07/12
Been on : Budesonide (some relief but not enough).
Switching to : Azathioprine and started Infliximab 14/08/12
Juicing every morning.
Taking vitamin D spray
Multi vits & iron
And Probio 7 probiotic.
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Being given a "drugs rest" from Aza - 17/9/14
05-03-2015, 06:28 PM   #8
sweetiepoo
 
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I will give the yogurt a try and see how it goes. Like I said, I am pretty willing to try anything at this point. I am currently taking macrobid for the UTI. I am taking twice as many probiotic capsules as I usually do because taking antibiotics definitely is not fun for the female system to say the least.

Enjoy the sunshine JameyLynn! I plan on doing the same thing pretty soon!

Hi Beach Bum!I wish I knew of another alternative to the ibuprofen. I really dislike taking it because I know how harsh it is on the liver and stomach, but sometimes the headaches make me so dizzy and I have no other choice. Maybe its another topic I could research for a more holistic alternative. Could be there is some kind of herb or oil out there that would help?

I am certain that whatever I am dealing with is more than a simple case of IBS. It is just hard having to wait around for testing. Wish I knew what was going on, but won't know until all the tests have been done. I am surprised my blood test results came back negative for things like: SIBO, parasites, celiac, etc. I was literally tested for 15 different illnesses and the only lead we have so far are the slightly high IGG and IGA levels that were in the blood test and that I am vitamin D deficient.

That's interesting about the fiber in smoothies. I had no clue that juicing could reduce the fiber. Sounds like a fabulous idea!

I will update you all on how the future tests and the yogurt goes for sure!

Last edited by sweetiepoo; 05-03-2015 at 06:51 PM.
05-04-2015, 01:02 AM   #9
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JameyLynn - I eat a lot of yoghurt, including the brand you mention and it's never done me much good. It's definitely not a bad or "trigger" food for me - all kinds of liquid/semi-liquid dairy like yoghurt, ice cream, custard, or just plain milk or milkshake etc. goes down easily which is why I eat a lot of them, but I certainly don't feel any worse when I don't eat yoghurt. Sorry for the negativity, I just can't see it being very likely to be such a super-food for many other people as it seems to be for you. When there are so many people online recommending all kinds of different treatments, you kind of have to be selective about the ones you try, otherwise you'd be continuously trying one thing after another or getting confused about contradictory advice (e.g. eat yoghurt vs avoid all dairy), and eating lots of yoghurt in an attempt to help bowel problems - especially for something serious like Crohn's - seems kind of a long shot to me. Do you know other people who have been helped so much by it?

Last edited by UnXmas; 05-04-2015 at 01:41 AM.
05-04-2015, 01:29 AM   #10
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I will give the yogurt a try and see how it goes. Like I said, I am pretty willing to try anything at this point. I am currently taking macrobid for the UTI. I am taking twice as many probiotic capsules as I usually do because taking antibiotics definitely is not fun for the female system to say the least.

Enjoy the sunshine JameyLynn! I plan on doing the same thing pretty soon!

Hi Beach Bum!I wish I knew of another alternative to the ibuprofen. I really dislike taking it because I know how harsh it is on the liver and stomach, but sometimes the headaches make me so dizzy and I have no other choice. Maybe its another topic I could research for a more holistic alternative. Could be there is some kind of herb or oil out there that would help?

I am certain that whatever I am dealing with is more than a simple case of IBS. It is just hard having to wait around for testing. Wish I knew what was going on, but won't know until all the tests have been done. I am surprised my blood test results came back negative for things like: SIBO, parasites, celiac, etc. I was literally tested for 15 different illnesses and the only lead we have so far are the slightly high IGG and IGA levels that were in the blood test and that I am vitamin D deficient.

That's interesting about the fiber in smoothies. I had no clue that juicing could reduce the fiber. Sounds like a fabulous idea!

I will update you all on how the future tests and the yogurt goes for sure!
Negative test results despite severe symptoms is not uncommon; there is an awful lot that tests can miss (that goes for many kinds of tests besides blood tests too), which is unfortunate since negative tests are no use to someone who's ill. When you know something is wrong negative tests are not reassuring. I don't think blood tests rule out SIBO though? At one point my doctors thought I may have it, and they said the test was so specialised they'd need to send me to a different hospital (in the end it became clear something else was wrong so I never got as far as having the test). Don't take negative test results as a sign that nothing is wrong.

As for painkillers, paracetamol and codeine will not upset your stomach like Ibuprofen can. Personally I don't find paracetamol any use at all, though I don't find Ibuprofen any use either. Codeine works a bit too well for me as it's very addictive, so you have to use it only occasionally in order for it to maintain its effectiveness for you.

Juicing will reduce fibre, and any fruit juice you buy (as long as it's without "bits") will be without fibre too. Avoiding fibre helps a lot of people with digestive problems (I couldn't eat much at all until my last surgery). However, as I said in my post above about yoghurt: you can't try every suggestion you come across, especially if you're at a point where you will "try anything". You have to be careful and figure out what's worth devoting your time/effort/money to. Though yoghurt is cheap, easy and harmless, it's more the "try anything" mentality in general, even when there's not much evidence something can help, that I'd be cautious about. There's quite a lot of evidence that a low fibre diet can be helpful - in certain situations. Just make sure you don't try and change too many aspects of your diet at once or it could become unhealthily restricted.
05-05-2015, 10:57 PM   #11
sweetiepoo
 
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I took quite a few tests/labs so I might be getting it mixed up as far as which test was the one for SIBO. I am hoping the ultrasound and any other tests the GI will have me do will reveal whatever is going on. I wish I could fast forward to see the results. Its easier to know what you have than be left wandering what exactly is the cause for the symptoms, even if its an incurable disease.

Although I can't try everything, I do want to try different things to find out what works. Its a matter of trial and error when it comes to having a grumpy gut. You are right, though, that caution is needed as what works for one person may not work for the other. You just have to figure out what works for yourself and that's what I am trying to do.
05-19-2015, 11:52 AM   #12
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Hi everyone! Just wanted to post an update. I received my ultrasound results and they didn't find anything out of the ordinary. Its a little disconcerting, but I just have to let this play out. I am going to see a GI this Friday which I expect from what my primary care physician told me, they will want to run even more tests.
05-19-2015, 12:24 PM   #13
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I understand the frustration of negative results. Do you know what tests they're planning next? I think you said you were hoping for an endoscopy?
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