New and looking for some help

[Bojacks2]

Hi I barely know where to start, but basically I'm having trouble getting a diagnosis and my doctors are useless they won't listen to me or even try thinking of what I might have. I'm a 19 year old male who is within normal BMI range, with a bad diet, and not much physical activity.

They just want to run tests and then after I've spent 3 grand and they find nothing they'll help me figure out what's wrong. So I'm wondering if anyone could help me by telling me if my experience sounds like typical Chron's or UC? Or maybe just unclassified IBS

I've already been to the doctor 3 or 4 times they were clueless. They took a CBC and all of my results were within normal ranges. Then I was referred to a GI specialist they did a DRE and sigmoidoscopy they couldn't find a reason for my bleeding/stomach woes.... the doc just assumed that the blood was from a fissure that healed up before I came in.

I've always had digestive problems, but I guess I'd call what I'm having right now a flare up. For the past 2.5 weeks I've been pretty miserable. I think it may have initially started from minor food poisoning, but I haven't felt like I've had a stomach bug since the first 2 days.

It's just non stop every day I've been having different problems. I started out with severe diarhhea+blood in the stool with stomach pain for 4 days. I woke up out of my sleep into a panic attack where my heart was racing and I felt like I wasn't breathing right which sent me to the hospital. After that I've had hard constipated stools for about 7-10 days accompanied with bloating, and stomach/gas pains that make me nauseous and keep me up at night.

My bout with constipation/blood in the stool is finally over, but now I've been having normal dark green stools with a foul odor for the past 5 days... I've looked up various reasons for having them but none of them fit. I don't have diarrhea, I'm not eating anything that would change my stools color, I'm not taking any suppliments, and I stopped taking laxatives/fiber suppliments 6 or 7 days ago.

And I've had constant bloodshot eyes that eye drops don't fix for the past week. They won't go away at any point during the day. I don't have any other problems with my eyes yet besides aesthetically, but I'd imagine that I will if they remain like this. I've been resting well and for 8+ hours a day so it's not because of fatigue.


Alternating Diarrhea/Constipation? Yes (Had diarrhea for awhile, then constipation for 10 days, and now I'm sort of normal)
Abdominal Pain? Yes mostly gas pains, but I had very very painful cramping early on that sent me to the hospital.
Bloating? Yes
mucus present? no
persistent diarrhea? No
loss of appetite? I can eat fine in the mornings, but I sometimes lose my appetite around dinner time from stomach pains.
rectal bleeding? Yes bright red blood in stool, but I had a CBC and I'm not anemic so it's a very small amount.
Fistulas? No
Fever? No
Malabsorption? Not sure
Weight loss? Nothing significant yet, maybe 3-5 pounds from lack of appetite.
Fatigue? Occasionally yes I've woken up with bloodshot eyes for the past 7 days they don't go away at any point in the day and I've been getting a good 8-9 hours of sleep.

 

[GoJohnnyGo]

Hello Bojacks,

I think a lot of folks here share your frustrations sorting out symptoms at a pre-diagnosis stage. Unfortunately, Crohn's isn't a one-size-fits-all disease. It manifests itself individually.

I hope you find relief soon. Your welcome to hang out here and keep firing questions.

 

[alexandros8]

Your symptoms are familiar, but as has been stated, its unfortunately not a black and white dx. Keep a positive attitude throughout it- it can take some time to get a proper dx. Have you been told to get a colonoscopy yet?

 

[Bojacks2]

It was suggested that I get a colonoscopy if my bleeding doesn't go away within 2 weeks of my sigmoidoscopy. But so far I haven't seen any further blood since my visit on Monday.
But I don't have health insurance so I really can't afford a colonoscopy anyway if all I have is an infection or acute/temporary problem.

Really my main question is if constant bloodshot eyes/green stool are common a symptom of IBD/IBS or maybe a complication of something else in the GI? Because I don't know if they're related to my previous symptoms that have gotten better as of late.

 

[Trysha]

hello Bojacks2

[Hello Bojacks
Your frustrations at lack of diagnosis sounds familiar and there are plenty of instances you will find on this forum.
It sounds as if your tests have been somewhat preliminary.
Don't give up.Keep complaining till you get answers.
Blood in stool is never normal and needs proper investigation.
You need a good gastroenterologist to cover a few more things possibly including a colonoscopy.,and someone to whom you can relate.
It depends where you live whether you can access places like the Ford centre in Detroit, or Mayo Clinic, Penn State Uni., Johns Hopkins etc.
Could also depend on your insurance plan how far you can go.
Crohn's can be an elusive diagnosis and can take time and many investigations to
achieve this.
annsplash

 

[Astra]

Hi bojacks
and welcome

I agree with everyone else, dont give up, and try to get a scope if you can, Crohns and UC is difficult to detect, I know, I was dx with IBS for years, til I found a gastroenterologist who found the Crohns.
As far as I'm aware, bleeding from the bottom does not happen with IBS, in fact, my gastro reckons it doen't exist (his opinion, not mine) that there's always an underlying reason for acute pain, D, V, C, bloat and bleeding, and should not be ignored.
Also, Crohns has a habit of manifesting itself in other areas of the body, the eyes and mouth being one of the most common, ie swelling eyes, mouth ulcers, so your eye problem may be/could be an indication?
hope you get some answers soon, any questions, just shoot
we are here to offer support and advice
good luck
Joan xx

 

[InkyStinky]

Hi Bojacks2!

I agree with all that has been said; I just want to add a note about paying for all this stuff. I don't have health insurance, either, and so far have not qualified for state aid. I had to have a colonoscopy last Sept, and my GI's clinic/hospital offer financial aid and payment plans for people without insurance. I got a big discount on my bill, and they put it on hold while my paperwork was being processed. I'd ask you clinic if they offer financial aid, and if they do get the paperwork started so you can be ready if you get into a situation where you have to have "big ticket" medical things done.

 

[Crohn's 35]

Hi Bo.. welcome to the forum! Everyone here has given you great advice, they how to help because we all have similar symptoms and pain. The test that shows the most is a Colonscopy, if you can get financial aid,, will show something, they take biopsies too. Many test are helpful but the Colonoscopy is the best in my opinion. Just from so many years of experiences. Red blood is usually UC or hemmies and anal area, the dark blood is form the intestinal area. Having D and C are contributing factors in Crohn's. Hope you get results somehow and get some treatment soon. Keep us posted.

 

[Bojacks2]

Hi Bojacks2!
I'd ask you clinic if they offer financial aid, and if they do get the paperwork started so you can be ready if you get into a situation where you have to have "big ticket" medical things done.

I'll have to look into it and see how that works. I'm currently unemployed, but I live alone so I guess I'm still a dependent and financial aid availability will be based off of how much my supporter makes?

It seems like I'm on the tail end of whatevers going on though it's been getting less painful for the past week... I've been reading about celiacs disease/food intolerance's being mixed up with IBD/IBS occasionally so I've been thinking of trying some diets to rule those problems out. Is this a normal thing to try or are the symptoms too different?

 

[Guest]

hi Bojacks, and welcome to the family

i also agree with what's been suggested already, in that Crohn's or in fact any IBD sometimes takes a lot of investigation before diagnosis is made... some of us have had to wait years. the trick is to not give up, listen to your body, and if you're convinced the docs have missed something, keep on at them.

just an additional thought for you to consider - if you had a particularly nasty strain of food poisoning or a bad stomach bug, which caused the recent upset, it's possible the effects are still lingering. i caught a horrid stomach virus which had hospital wards closed down a few years ago (was staying in hospital with my kid who'd had her appendix out)... we both got the bug, and were very poorly for weeks after coming home... i had green poo too! had to take a stool sample every day for 7 days to my doc.. only one sample of the 7 showed the bug still present.... it took ages to clear, about 8 weeks.. and even then i still had stomach cramps for a while..

 

[InkyStinky]

I'll have to look into it and see how that works. I'm currently unemployed, but I live alone so I guess I'm still a dependent and financial aid availability will be based off of how much my supporter makes?

I think so - the forms I had to fill out asked for total household income, monthly expenses, last year's tax info, outstanding medical bills, other stuff I'm forgetting right now, and a little essay section where I explained my health situation and the need for financial aid.

It seems like I'm on the tail end of whatevers going on though it's been getting less painful for the past week... I've been reading about celiacs disease/food intolerance's being mixed up with IBD/IBS occasionally so I've been thinking of trying some diets to rule those problems out. Is this a normal thing to try or are the symptoms too different?

I'm glad you're feeling a little better - I really hope that you don't have IBD! I've never had much success with nutritional plans (my symptoms seem to have no connection to anything I eat/don't eat) but I've heard a lot of people do. Good luck!

 

[Bojacks2]

I forgot to add one other thing that is sort of bothering me I've lost about 5-7 pounds in the past 10 days. Should I be worried or should I just assume it's from the diarrhea and then subsequent laxatives to solve my constipation problems? I didn't start weighing myself consistently until my problems started, but 2 weeks ago I saw between 204<->206 and today I'm at 199.

I was lacking an appetite for about 3 days.... I probably had around 1500 calories on those days but besides then I've been eating pretty normally. And I haven't exercised at all lately.

 

[Astra]

Bojacks
leave off the laxatives and high fibre for a kick off
because, say you're blocked? for example, something obstructing, or your bowel narrowing, then laxatives cause seeping thro and round the blockage, but not a normal BM, alternating D and C, more pain and cramps and so on. hope that makes sense?
If you have an IBD, then yes you probably will lose weight, it's usually one of the first signs.
Also, in my experience, not eating, gives me diarrhea, strange but true. Have a look around the forum for the low residue diet, and drink copious amounts of water, this will help with the C
hope you get sorted soon xxx

 

[Nicole]

Welcome Bojacks,

I'm sorry you're going through such a rough time. Quite understandably it will frustrate you until you get a solid diagnosis.

I'm glad you joined us as you can gain a wealth of knowledge on this forum and folks here are always willing to answer your questions.

It was more than 10yrs of symptoms and misdiagnosis before I found out what I was ill with. When the bloody stool and pain increased I changed my GP and insisted on a referral to see a GI and have a scope done. I got a dx of Crohns right away. Sometimes you've got to grab the bull by the horns to get result.

Hope you get some answers soon and get treated.

Good luck and stay in touch.

 

[Bojacks2]

Thanks for all the advice and support I wish there was a general knowledge post or something for FAQ's so I could stop bumping my thread.

I got brave and decided to try something spicy today since it seemed like my symptoms were letting up and the pain has been more of an annoyance instead of day-ruining....... and 2 hours later I'm having watery explosive problems and stomach cramps.

I've rarely had a problem with spicy or rich food in the past, but now anything oily/spicy just kills me. So simply my question is if I had IBD/IBS wouldn't I have always had trouble with these foods? Or do you become more susceptible to certain foods during flare ups?

I'd really like to get a colonoscopy to narrow down/solve my problems, but my GI recommended not to get one unless I see blood in my stool again. (even though he hasn't offered any suggestions as to what is causing my problems)

 

[Crohn's 35]

Hey Bojacks, IBD and IBS have the same symptoms, when you are in a flare it is best to avoid spicy and fatty foods. I avoid them anyways because I never know if my IBS is gonna start or my Crohns. Just have to weigh out the risks. During flares, I am most cautious. Drink Ensure helps during those times for bowel rest.

I am surprised your Gi only scopes unless you are bleeding. I have had Crohns 18years and I dont bleed. Although a month ago I did because I had a bug and my IBS was irritating the lining and taking mucous with it. In my opinion if anyone has IBD whether you have symptoms or not, should have a colonoscopy at the very least 2 years, I get one yearly because I am not always in severe pain.

 

[Bojacks2]

The doctor wasn't willing to go out on a limb for anything he didn't give me any suggestions as to what's wrong with me. Besides that he thought my constipation was causing me to have fissures+bright red blood. But I still don't have a clue as to why I've been having alternating bowel habits + gas/pain for the past month.
My GI's only advice last week was to come back for a colonoscopy in two weeks if the bleeding doesn't stop after taking Miralax.

I just called them up this morning and they suggested that I schedule a barium(?) enema and I'm pretty sure that I'm going to... but I'm curious if they don't find anything with the barium I'll still have to get a colonoscopy. Is there any reason to not skip the barium and just get a colonoscopy?

 

[Crohn's 35]

Oh Bo!
U might have to get both eventually! U stated that your whole GI tract is in pain. So better to check it all I guess !?
I think it is up to you. I have had numerous colonoscopies and barium, both were beneficial at the time.
You are in charge of your body and care, so u need to decide if it's worth it.
Personally, the peace of mind is worth it.

BC is right, couldn't of said it any better .

 

[Bojacks2]

I decided to skip the barium enema since it sounded very unpleasant and long compared to a colonoscopy. So I called to schedule a colonoscopy this morning.... they can't get me in for awhile so I'll be worrying in the mean time. The one last thing that I've been worried about is the blood in my stool.

It only appears when I'm constipated/struggling with hard/sharp stool or if I take a laxative I've seen some blood. But when the GI examined me he didn't find any hemorrhoids/fissures/tears.

What causes blood in the stool with Chrons/UC/Colon cancer? Is it ulcers/polyps in the colon that get blood on the stool as it passes/rubs up against them? I'm wondering if I had one of these three serious problems if I'd see blood in all kinds of stool instead of just when I'm constipated.

 

[MacJr]

Got a doc appointment this wednesday. I'm hoping and praying for answers!

 

[Jer's Girl]

welcome Bojacks2! I hope you get the help and answers you need soon. It looks like you got a lot of good advice on this forum already. I'm glad you joined!

 

[alexandros8]

Is the blood in your stool visible, as in on the outside or away from your stool? It could possibly be a fissure- which is another CD commonality. If its not, as in darker and a part of your stool its more so an intestinal problem. (See Jettalady's post above too) Either way, try and not worry about it. You will have answers soon enough.... worrying won't do you much good!

 

[Bojacks2]

It's bright red blood I normally see it a couple of times a month, but during this "session" it's been 3-4 days a week. It's visibly on the outside of the stool and on the toilet paper. While chron's/UC are also terrible diseases the possibility of colon cancer which is super rare at 19 still worries me the most for some reason.

 

[Astra]

Try not to worry Bojacks

in our experience, bright red blood on the tissue paper may indicate a small tear, piles, hemmos, and straining with C can cause that.
If the blood is dark, browny red, then it's coming from inside, your intestines. and a scope will find that.
Try to relax and not frighten yourself with thoughts of colon cancer, if this was the case, you would know about it, and be seriously ill with more than blood on your tissue.
Hopefully you'll have an answer and be put on the right meds
lotsa luv
Joan xx

 

[alexandros8]

Yeah I wouldn't worry either. I've had the same problem for over a year due to a recurring fissure. The doctors say its a normal symptom of Crohn's. I was prescribed a cream to apply which has helped. When I get home I'll get the name of it and update this post.

 

[InkyStinky]

It's bright red blood I normally see it a couple of times a month, but during this "session" it's been 3-4 days a week. It's visibly on the outside of the stool and on the toilet paper. While chron's/UC are also terrible diseases the possibility of colon cancer which is super rare at 19 still worries me the most for some reason.

When my Crohn's is flaring I have bright red blood on the tp, in the stool (or D, depending on how far things have gone), and when things are really bad in the water. My GI has never said anything about fissures/tears/etc - if I understood him correctly the blood was bright red because my worst area of inflammation is my descending colon (last part before the rectum).

I'm sorry you're worried about cancer - it is a scary thing. Glad you have a colonoscopy scheduled - I hope that gives you some answers!

 

[alexandros8]

Hey Bojacks, the cream I've been prescribed for my fissure is called Proctosol-HC. I can't confirm its effectiveness yet because I'm so new to it. But it might help you.

 

[Bojacks2]

So I managed to calm myself down for the past two weeks, but I still have a few weeks before I'm going in for a colonoscopy. I used a cream for fissures a couple of times that my GI gave me a sample of and it seemed to work(?) maybe.

But today I re-freaked myself out again since the blood in my stool came back for the first time in 2 weeks.
I manged to convince myself that the blood I was seeing was coming from fissures since the occurrence of blood in my stool only happened when I was constipated/had hard stools.

(slightly detailed info below)
But today I saw some bright red blood on the outer edges again it's always on the very last part before I'm finished going to the bathroom.....but it was normal stool that couldn't possibly cut/tear anything. Does this rule out fissures/tears as a cause for my blood? I also haven't had any burning or pain when having bowel movements that seem typical with fissures.

Or can they re-open up/fail to heal completely if your having GI problems/spasms/occasional diarhhea/ and occasional straining. I'm trying to not over think anything, but whenever I see blood I start getting nervous and trying to self diagnose.

 

[Mountaingem]

Hi Bojacks! I'm gonna ask a personal question-what color is the blood? In my experience if it's bright red-whether it's streaked,coated, or at the beginning/end, it's from rectal/anal area. If it's dark red, but is the same as above, then it's from small bowel/large intestine area. You can also have bloody mucous in or on the stool, which makes it appear to a someone unfamiliar with it that there's more blood than there actually is.
To answer your fissure/tear question, you usually have pain with them, but sometimes I've had them w/o alot of pain; fistulas, however hurt really bad, with low back pain as well. And yes, once you get the fissures, they can reopen pretty much whenever the disease isn't controlled, or when you're having diarrhea; but I've also had it happen when I've had too much fiber as well, and from riding in the car too long. Isn't Crohn's fun? lol
I know it's scary to see blood, but from what I've read in your posts it's a smaller amount than what most of us have passed; I think that's a good sign. It's also scary to have to wait for a test and a diagnosis, but these things can't be rushed so just try to take it one day at a time. I hope this helps and that you get answers and on the road to recovery soon!

 

[Bojacks2]

Thanks for the response, the blood was barely visible on the edges/sides but it's always been a fairly bright red.

I hate that I need to ask so many questions, but has anyone experienced uveitis/iritis or bloodshot eyes from Chron's? Today I woke up and I have what looks like a broken blood vessel surrounding 1/8th of my iris in my left eye to go along with both of my bloodshot eyes that I've had for 2.5 weeks now. Eye drops don't do anything to relieve the problem even temporarily.

The doctors didn't think my bloodshot eyes were related to my GI problems, but I've never had bloodshot eyes before in my life and I'm sleeping perfectly fine with no allergy or dry eye symptoms. My eye problems started a week after my major "flare up" started.

 

[Astra]

Hi Bojacks

I have bloodshot eyes on a regular basis now, they don't hurt, I don't put anything in them, I leave them alone, and they go,
I believe it's all part of being a Crohnie!
My gastro is not concerned and has seen it all before!
If, however, you are worried, mention it to your doc or optician
xxx