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IBD ? Food intolerances ? IBS ?

A

AshRyzE

Hello all,

I'm a 20 yo male. Lot of GI issues, today it's mostly diarrhea with blood and mucus sometimes (recent onset, 5 times), and lower left quadrant pain (mostly, 80% of the pain with rectum and back around rectum) (some generalized pain but nothing as severe). On CT scan I have nothing except for a lung bronchiectasis. I have fever whenever the condition is "active".
My pain is dull / sharp / crampy pain. I also have diarrhea, constipation, soft stools, ragged edges stool, sometimes mucus mixed with stools.
Other symptoms are : fatigue, brain fog, low grade fever (100°F-37.7-37.9°C).

On blood tests : anemia (hematocrit range : 43-37), low magnesium, low bicarbonate blood, slight hyperkalemia, 0.4-1 mg/dL CRP, ESR 7-12 mm/hr, monocyte stuck at upper limit of normal, low cholesterol (LDL, HDL).
Sometimes the disease will stop or become less intense but whenever I eat / use / have one of the following I have symptoms :

Dairy. Any dairy.
Gluten.
NSAIDs. (ibuprofen, any -fen thing, aspirin)
Whole grains.
Expired food.
Greasy foods.
Stress.
Not enough sleep. (suspected)
Antibiotics.
Some processed foods.
caffeine.
Carbonated beverages.
When I eat a lot.
High INSOLUBLE fiber diet. Soluble fiber are fine. The worst being : Gluten / NSAIDs / Antibiotics / whole grains. (by far)

I made a symptom diary and made a graph with them [ATTACHED FILE]. I take no medication. (there is 104 graduations, two graduations a day) (this is not pain rating, this is quality of life rating, 20 stools a day will be a bad day here, even if the pain is tolerable) I wonder if this is coherent with IBD. (I know everybody is very different and that even if I have IBD, probably no one here will be able to relate).

I don't know what I may have. It seems IBD shouldn't exactly behave like this, but nor should IBS or the food intolerances I have.

If anyone can help or relate.

Thank you for all your answers.

As many of you are probably IBD-sufferers, I send you my wishes of good health. May your remissions be long.

AshRyzE
 

Attachments

ronroush7

ronroush7

It could very likely be IBD but I don't know. You should get diagnosed by a doctor. NSAids are known to cause bleeding. Especially if you are on antibiotics, ask your doctor about doing probiotics. Wish you the best. Let us know how you are.
 
A

AshRyzE

Thank you for your answer.

I never was on both NSAIDs and Antibiotics at the same time, but they both caused me symptoms.

I do probiotics, they actually work quite well.

Thank you. Wish the best for you too.
 
H

happy

Welcome to the forum AshRyzE.
First of all, if the lung condition you have is Bronchiectasis and not just Bronchitis, you need to find the cause of the lung condition as it can cause very serious problems that can shorten your life.
If you do have Bronchiectasis, then you should get tested for Cystic Fibrosis (CF) as cystic fibrosis can cause Bronchiectasis and CF has many gastrointestinal manifestations as well.
Cystic Fibrosis is usually diagnosed in childhood, but some people are not diagnosed until their early twenties. People who have Cystic Fibrosis tend to have difficultly keeping weight on as they lack certain digestive enzymes to digest food properly and they have frequent lung infections.

Good luck.
 
A

AshRyzE

Thank you for your answer.

My condition is indeed Bronchiectasis which is a enlargement of lung airways. I have chronic cough that produces mucus and I have bronchitis 1-3 times a year, but the condition is fairly well managed and my bronchiectasis is "not severe at all" according to the CT scan and doctors.

I heard bronchiectasis could be caused by IBD.

I never got tested for Cystic Fibrosis, I didn't even know what this condition was and I only knew the name. I'll discuss it with my GI and my family physician. Thank you for bringing this up.

I'm seeing Doctors, and I'll probably have more exams.
 
A

AshRyzE

5 days totally symptom-free. Yeah !

What's weird is that 2 doctors I've seen says IBD is likely (I never described them the symptoms diary though), 2 believe it's serious food allergies / intolerances, 1 IBS.

Do you think the symptom graph is coherent with IBD or not at all ? I don't think I've ever read someone with IBD having something like this. Not serious enough.
 
A

AshRyzE

Is there any explanation as to why IBD symptoms differ so much ? Actually I've read about some people with asymptomatic IBD while some have very penetrating IBD that require multiple surgeries, and patients having IBD in mouth, and stomach.
 
my little penguin

my little penguin

Moderator
Staff member
Different phenotypes have been found
In little kids it's believed to be more genetic based
Adults more perfect storm ( genes enviroment etc)
Crohns is an umbrella term and most feel it will divded into 3-5 main sub categories but tgat it years away
For now it's just important to know what crohns means to the individual you
 
D

dejavucandace

fatigue, brain fog, low grade fever. This was literally me for about 6 months. I used to go to the gym about 4 or 5 times a week. And suddenly I could barely get out of bed or function at work. And would be back in bed as soon as I got home. I discovered most days that I was walking around with a fever but its hard to explain this as my normal body temp is about a half degree below what is medically considered normal (probably due to the hypothyroidism) This condition can be very debilitating and seems most doctors just listen and push you out the door. It is a slow process getting diagnosed. I was told I have crohns a few months ago but now it seems they are saying maybe not and I have been scheduled for another colonoscopy just to make sure. All the symptoms are pointing that way for the last 4 years and still nothing confirmed. sigh...
 
A

AshRyzE

Oh and by the way, I'm sleeping a 12 hours 9 minutes average. I think that's a bit too much and I find it disabling. I have way less time to live than my relatives and others. Has any of you experienced that ?

Aged 15, 5 years ago, I was perfectly operationnal sleeping 6,5 (6h30) hours a day.
 
D

dejavucandace

On the weekends I sleep 12 hours most nights and then have a nap up to 4 hours. I am always tired and iron and thyroid levels are supposedly normal. uggh I feel your pain. and when I an awake I have no energy for anything!
 
A

AshRyzE

Well I guess it is IBD.
I just had a major flare, well I don't really know because it lasted only 2 days and nearly stopped but that's beyond what IBS And food intolerances cas cause I believe:

- I ate food (meat) that spent the night out of the fridge (at 30°), that's not very clever I know, but that was not supposed to nearly make me rush the ER.

After eating this, I began experiencing heavy reflux, indigestion, dyspepsia, feeling like when you want to throw up, dizziness, severe headaches and fatigue.
I slept 16 hours the two following days.
I also had some fever, and terrible diarrhea and pain. Mostly that. that started after the "digestion" issues.
I went to the toilet respectively 9 times and 24 times in the 2 days it lasted. I had mucus, blood and diarrhea (not liquid diarrhea), I felt like dehydrated, weak, I became paler than I'm already. But mostly I had severe pain, it would be worse before going to the toilet, but it was bad all the time. I had like extreme cramping that would even cause me to stop walking, and I had to repeatedly lay down (3 times) in the street because I just couldn't do anything else, the pain was probably 9/10, maybe shitting on myself would have relieved the pain but the pain when defecating is so intense and in the street, well I considered it, because I didn't know whether I could reach home. I took a long time to walk to my home because of this, each step was a small but great victory. The pain was crampy, sharp pain but something of the pain was like if my stomach was rotting, or being eaten by something that was growing inside, hard to describe. I had shivers of pain.
I also developed a pain in Lower right quadrant, dull pain, continuous, not sharp or intense, but enough to prevent my routine and prevent me from sitting for more than 10 minutes, that would worsen extremely upon pressure. The area was and is still very tender, pressuring it is just like a knife. I pressure it, I cry, really, I cry.
However after two days, except the Lower right quadrant pain that is still dull and severe upon pressure (but less, I'd say 7/10), most of my symptoms are gone. I still feel the urge to go to the toilet, about once every two hours, it's mud-like stool without blood. I'm extremely tired yet somehow I can't sleep.

What the hell is that ? Some infection my body is fighting and winning against but that nearly beaten me ? Some weird IBD ?
 
ronroush7

ronroush7

AshRyzE said:
Well I guess it is IBD.
I just had a major flare, well I don't really know because it lasted only 2 days and nearly stopped but that's beyond what IBS And food intolerances cas cause I believe:

- I ate food (meat) that spent the night out of the fridge (at 30°), that's not very clever I know, but that was not supposed to nearly make me rush the ER.

After eating this, I began experiencing heavy reflux, indigestion, dyspepsia, feeling like when you want to throw up, dizziness, severe headaches and fatigue.
I slept 16 hours the two following days.
I also had some fever, and terrible diarrhea and pain. Mostly that. that started after the "digestion" issues.
I went to the toilet respectively 9 times and 24 times in the 2 days it lasted. I had mucus, blood and diarrhea (not liquid diarrhea), I felt like dehydrated, weak, I became paler than I'm already. But mostly I had severe pain, it would be worse before going to the toilet, but it was bad all the time. I had like extreme cramping that would even cause me to stop walking, and I had to repeatedly lay down (3 times) in the street because I just couldn't do anything else, the pain was probably 9/10, maybe shitting on myself would have relieved the pain but the pain when defecating is so intense and in the street, well I considered it, because I didn't know whether I could reach home. I took a long time to walk to my home because of this, each step was a small but great victory. The pain was crampy, sharp pain but something of the pain was like if my stomach was rotting, or being eaten by something that was growing inside, hard to describe. I had shivers of pain.
I also developed a pain in Lower right quadrant, dull pain, continuous, not sharp or intense, but enough to prevent my routine and prevent me from sitting for more than 10 minutes, that would worsen extremely upon pressure. The area was and is still very tender, pressuring it is just like a knife. I pressure it, I cry, really, I cry.
However after two days, except the Lower right quadrant pain that is still dull and severe upon pressure (but less, I'd say 7/10), most of my symptoms are gone. I still feel the urge to go to the toilet, about once every two hours, it's mud-like stool without blood. I'm extremely tired yet somehow I can't sleep.

What the hell is that ? Some infection my body is fighting and winning against but that nearly beaten me ? Some weird IBD ?
Click to expand...
I hope you get as me kind of answer soon. Let us know.
 
A

AshRyzE

But, I just don't understand ! Now, right now when I post this message I have nearly no symptoms at all. No pain except when applying pressure, and only a discomfort feeling. It nearly appears over.

Crohn and UC or other organic disease don't last 1 to 3 days before decreasing exponentially right, I know it's different for everybody but Crohn is not only when you make a mistake in your diet and sometimes only for hours, that's too different from what I've seen here and anywhere else ?

But then again, I had a trigger, I ate some gluten and some expired food. For days, since the initial post, I had nearly nothing, I was fine. I do something that is "potentially bad" for me and it goes crazy, I'm unable to go any further than my bed !
 
A

AshRyzE

Symptoms are now fully over. No more abdominal tenderness. No more fever. No more fatigue. No pain at all. I'm at 0/10 at my symptoms level rating.

That's one of my worst flare in intensity but without a doubt the one that lasted the shorter. What the hell is that ?
 
A

AshRyzE

It's a different concern but I caught a common cold and now it worsened, I have sinusitis, 38,5°C fever and probably a bronchitis, with my bronchiectasis and asthma I worry it may worsens even more. I had 2 asthma attacks today and I must rest every 100 meters I walk. Hope that will go better from now on !
 
A

AshRyzE

Thank you. Have you (you or anyone else willing to help) ever heard about IBD - lung issues / allergies / sinusitis relationships ? I'm really interested by this as I might have IBD and I have a lot of "respiratory system" issues, especially allergies and lungs (asthma / bronchiectasis).
 
ronroush7

ronroush7

There is a section in this forum called Extra Intestinal Manifestations. I wonder if that might be helpful with these questions? Sending support
 
A

AshRyzE

I gave a look at the Extre Intestinal Manifestations sections. I learned a lot of things. I especially learned about something like 20 diseases I now fear I have. :( IBD is really bad. :(

My GI issues are still under control. My lung issues have improved with some medications and with an increase of my background regimen treatment. Even if I wouldn't call them "under control", I'm now able to "live" with them and they're getting a bit better each day.
 
ronroush7

ronroush7

AshRyzE said:
I gave a look at the Extre Intestinal Manifestations sections. I learned a lot of things. I especially learned about something like 20 diseases I now fear I have. :( IBD is really bad. :(

My GI issues are still under control. My lung issues have improved with some medications and with an increase of my background regimen treatment. Even if I wouldn't call them "under control", I'm now able to "live" with them and they're getting a bit better each day.
Click to expand...
Tell the doctor about your concerns. I wish you continued improvement.
 
A

AshRyzE

Well, l'm not fearing EIM enough to discuss it with my doctors, but it Will always be somewhere in my head.

Though I wondered, is colonoscopy with deep anesthesia (in my country we have the same Level of anesthesia as any open body surgery) safe with infectious bronchitis, uncontroled asthma and bronchiectasus ?
 
A

AshRyzE

Hi,

I've had few GI symptoms since last post. Bronchiectasis and bronchitis are way better. Not normal but "under control" with the increased treatment.

Though, I've had spine pain for a week.
 
A

AshRyzE

An update
No more spine pain
2 days of GI severe symptoms, caused by unwanted milk intake
Nothing else GI
Asthma and bronchiectasis are in remission (if we can use this Word for asthma)

However I sleep an average of 12 Hours a day lately
I feel like I m always rushing everything
 
A

AshRyzE

My GI issues are still fine.

My asthma is really REALLY bad though. I take the maximum meds dosage I can and it is still not under control. I'm now on oral steroids for asthma.
 
A

AshRyzE

Asthma s si bad I have not slept at all since last post. I feel wrecked and I m surviving.
I have an emergency appointment soon but I fear I will have to go to the ER before. First time ever asthma is so bad.

My belly started aching softly. Maybe lack of sleep.

Whenever I lie down I cannot breathe and cough enough to throw Up my lungs. Breath really short.
 
A

AshRyzE

Slept a bit. Interesting thing, I m 20 y o but i've Turned nearly white, that happened in 2 montes.

CAN anyone relate ?
 
A

AshRyzE

Update on my condition :

I have been pretty much symptom free for the last month. Asthma has been much less symptomatic since I started low dose oral prednisol and some other drugs.

I had pretty much no GI issues except one or two bouts of diarrhea. I've gained a bit weight (which is bad)



Those 2 last months have clearly been the best I've had in years ! By far. :)


Fatigue has been less severe. I often had to sleep from 12 to 15 hours to not feel too weak (which was terrible for my life) and lately I've been able to reduce that to roughly 9 hours a night while feeling better overall.

Most days would have a 0-1,5 rating on my graph.

Well, since I'm ok now, I've been a bit lost to follow-up but I'm considering to push for a colonoscopy since asthma and bronchiectasis are nearly under control.



Do you have any advices for me now ? Which is weird is that I'm really feeling fine but my history of issues is a bit scary.
 
GI Jane

GI Jane

OMG I love your graph! I so am going to steal that and add a similar one to my spreadsheets of Blood Work, Procedures, Medications, you rock. Dairy flares me for sure, found solace in Coconut Almond milks. Oils and much of the same things as you have and more. I did have a bone island in lung I believe was the terminology. I have a lot of calcification where it shouldn't be which if I remember wright is a problem with Crohn's Disease have to research again on this problem as I currently have more Calcified Uterine Fibroids, which can add to my constipation issues I'm currently having. When the body is off it does some odd things I've been finding out....I really should get an honorary medical degree eventually lol.
 
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