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AmandaMB

AmandaMB

Joined
Nov 3, 2012
Messages
32
Location
Cape Girardeau,
So I am kind of new to this whole Crohns thing and I have heard a lot of people talk about it affecting their bowels. For me, I suffer from horrible stomach pains and usually notice right when I eat something that it hurts very bad. I also get nausea, and anytime I have a blockage I start dry heaving. I have really bad fatigue as well. Here lately I have been dealing with depression and no energy or motivation what so ever (though this could be due to Remicade).

When people find out I have Crohn's they always say "oh so do you like poop a lot?" I really dont. I have mostly normal bowels with occasional diahrea.

A lot of you on here talk about bloody stools. Any reason why I am experiencing different symptoms???
 
Out of interest have your docs ever checked your vitamin levels - especially your B12? If not ask them to get this done. How is your tum at the moment?

Symptom wise I have never had blood in my bm's either and others have constipation so pooping a lot is not a definite with this disease. For me when flaring my normal issues are: pain, diarrhoea, mouth ulcers, fatigue and some joint pain.

AB
xx
 
Yes they check my levels and vitamins quite often....usually a lot of it is low, the vitamins and iron is at least. They try everytime to give me supplements to take but doesnt seem to work much so they just say hopefully when we get the crohns under control then everything else will fall into place. Of course I havent told them yet about the horrible fatigue and depression and being unmotivated.

As for my stomach now....I have my good and bad days. I usually feel pretty good for 2-3 days then feel horrible for 3-4. Its like a continuous cycle.
 
Crohn's Disease can have different effects on different people because it can occur anywhere in your digestive system. There is a rather large list of possible symptoms and some people may only experience a few while others experience more. Don't worry too much about it :ybiggrin:

Personally, my symptoms include nausea, bad stomach cramping, dizziness (from being anemic), diarrhea, as well as others.

Hope this helps!
 
When are you next due to see your GI? Are you able to contact him and or an IBD nurse to let them know you arestill having problems? What specific supplementation are you getting?
 
My next appointment is sometime in December. I have contacted them recently so they started me on the Hycoscyamine. Im not recieving any supplements right now other than vitamin D3
 
Amanda,
My daughter(age 14) has Crohns Colitis. She does not have diarrhea, she has cramping and bleeding. She was extremely anemic and now that is under control. She has gone from severe to mild in 8 months, but still continues to bleed and has cramping. another friend I met on this site who has Crohns in the same location continues to bleed and cramp as well. I am not sure how to stop these symptoms completely. The remicade (5 treatments) has helped and removing lactose from her diet made a difference too.....

Please keep us informed how you are doing.

take care:rosette2:

Julie
 
I would look into getting your levels checked again, you B12 especially as mentioned above and ask them for the specific level.
 
I have moderate to severe crohn's colitis and my major symptoms during a flare are cramping, bleeding and heavy mucous, diarrhea/urgency, fevers, lower back pain, loss of appetite, fatigue.
 
Fatigue is a constant in my life, also. I've noticed that certain things set off my stomach either right away or in a few minutes; chocolate, lime, soda (pretty much anything carbonated, even just water), corn.

Those are the super big nonos for me, but since I also have other concerns (including blood in stool, etc), the "no list" is a bit bigger than that, but I haven't had a stomach ache in a very long time.

If you end up discovering what removes your fatigue, I'd love to know.

Anyway, I hope that helps a bit, and good luck!
 
AmandaMB said:
Yes they check my levels and vitamins quite often....usually a lot of it is low, the vitamins and iron is at least...Of course I havent told them yet about the horrible fatigue and depression and being unmotivated.
Click to expand...

I would absolutely get your B12 levels checked. Especially if you are already dealing with low iron as B12 deficiency is another form of anemia that most people don't know about but is common in crohn's patients because the terminal ileum is not absorbing the vitamin well enough when your food is being digested. I found out a month ago that I was near b12 deficient. I had to ask my doc to give me the blood test after researching and talking to people here on the forum. Turns out I was low and need to take b12 injections as supplement. It has only been a month since I started but I think it is doing something to help. I'm sure it will help more with time and additional injections.

My b12 level was 329 and came with a warning to the doc on my lab results about having such a low number.

The norm I believe is between 200 - 1100. The lower the number, the more risk you are at for complications including nerve damage, mood disorders, fatigue and other things.

Read over this for info on b12 deficiency symptoms and treatment options
http://www.crohnsforum.com/wiki/Vitamin-B12
 
My main symptom is fatigue. I have stomach pain in various locations, diarrhea, and nausea.

Just wondering, is the hyoscyamine helping your pain?
 
SarahBear said:
My main symptom is fatigue. I have stomach pain in various locations, diarrhea, and nausea.

Just wondering, is the hyoscyamine helping your pain?
Click to expand...

I have only been on it for about a week now but so far it seems to be helping. Its just a pill that dissolves under the toungue. i take it 3 times a day before eating. I have only had a little aching since i have been on it. Well one day I actually had pretty severe pain to where I couldnt stand up, this happened after I ate, I took it then too (not sure what happened with that) I had family in from out of town that evening so I had to deal with it while we all went bowling :yfrown: not so much fun! For any of you attempting to bowl while you are in pain, I dont suggest it! I went home that night barely able to breathe, slept it off and woke up the next day feeling mostly better.
 
With the vitamins if any are low then you start supplementing and have them retested a month later. If they are still low the supplements need to e increased and then retest again in a month. If certain ones like Iron and B12 for example are still low (even with the slow release tabs or the ones that go under your tongue) then you need to talk to your doctor about getting a B12 shot or an Iron infusion (there are probably others that are an infusion, I believe potassium is one). I get B12 shots now since trying multiple kinds (including the ones that go under your tongue) yet my B12 was still low.

I've had mild to severe flares over the years. A minor flare for me will bring abdominal pain, joint pain, diarrhea, fatigue and mucus. A severe flare for me bring the same symptoms as the mild yet all are much more severe along with nausea, vomiting, flu like symptoms (body aches and fever), and blood in my stool.
 
AmandaMB said:
I have only been on it for about a week now but so far it seems to be helping. Its just a pill that dissolves under the toungue. i take it 3 times a day before eating. I have only had a little aching since i have been on it. Well one day I actually had pretty severe pain to where I couldnt stand up, this happened after I ate, I took it then too (not sure what happened with that) I had family in from out of town that evening so I had to deal with it while we all went bowling :yfrown: not so much fun! For any of you attempting to bowl while you are in pain, I dont suggest it! I went home that night barely able to breathe, slept it off and woke up the next day feeling mostly better.
Click to expand...

You take it regularly, rather than just taking it when you feel pain?

It was prescribed to me, but it didn't do anything but make me tired. I took it as needed for a while, saw no difference, and tried it regularly. Still no difference. I'm glad you're having better luck with it. :)
 
SarahBear said:
You take it regularly, rather than just taking it when you feel pain?

It was prescribed to me, but it didn't do anything but make me tired. I took it as needed for a while, saw no difference, and tried it regularly. Still no difference. I'm glad you're having better luck with it. :)
Click to expand...

yea I take it regularly. It does have a lot of warnings about drowsiness....and I notice it but I am tired all the time anyways so I guess it doesnt make it much worse.
Im sorry it doesnt work for you :(
 
Hi Amanda,

Your symptoms sound exactly like mine. When I'm having a bad day, I have really debilitating pain, extreme fatigue, lack of focus, and just an overall feeling of being really unwell. It seems to be concentrated around eating for me as well -- within 10 min of eating anything, even liquids, the symptoms become the worst and remain constant for about 2-2.5 hrs. It makes working all but impossible, and of course, it seems to happen most while I'm at work! My BMs also are mostly normal with occasional pain & mucus, no blood.

I've started entocort recently and that's seemed to help a bit, but I'm still having bad days. Going to talk to my GI today about what the next step may be.

Keep us updated how things go for you.

Mo
 
Has anyone with Crohn's noticed problems where sometimes it feels like it gets really hard to breathe?? Or maybe from the Remicade? Also a bloody nose? Is this normal??
 
I was 19 when diagnosed. I first noticed nasty mouth ulcers and more frequent trips to the loo. Every time I went to the loo it was always bad D. A few members of my family thought I had an eating disorder as not long after these symptoms i was chucking up after every meal, so this resulted in a dramatic weight loss from 9 and a half stone down to a worrying 5.12. Other symptoms at the time of my 'flare' (now in remission as from Jan this year) are Loss of appetite, Fatigue, shakes, always feeling cold, always thirsty,weakness and My periods stopped. (Only just started again after 2 years of not having them I've now had regular ones for 3 months YAY!)

After a depressing, upsetting little journey I am now on better medicine and haven't felt this good in a very long time!

I hope you all the best and I hope your symptoms improve and that you have as much of a success story as i do. Crohns I strongly thought had ruined my life and I never thought id get out of that dark tunnel and where I am today.Everyone would say " it gets easier" at the time you just nod and smile and think to your self 'yeah right' but trust me it will get better!.

SOME USEFUL ADVISE THAT I FOUND HELPED
1. If symptoms change, if you feel worse than talk to your doctor there are rather a few different medicines out there, you just have to fight for them to find the one that works for you.
2. Write a food diary on everything you eat. I also used to put how many BMs i'd had and how i was feeling that day for my doctor to see and record.
3. Take all medicine properly and keep up with it unless your doctor tells you different this includes the dose. ( Many times i'd try cheat steroids and reduce my intake and i'd be back to square one)
4. Surround yourself with positive, amazing people who make you happy and make sure you appreciate all the little things in life ( I went on holiday and sat on the beach and took in every detail) you really do appreciate things more when you have had a bad time!

All the best xx
 
I am new to crohns aswell, i guess i have had symptoms of bloating constipation and irregular stool types plus stomach ache for a lomg time but for the past 5 weeks i have been bleeding regularly, cramping, stomach growling, fatigue, weight loss, thirsty, cold and it really sucks.. I just want the bleeding to stop most of all but nothing has seemed to work as of yet:(

orally salofalk 500 mg, aminosalicylic acid 500mg
suppository salofalk
antibiotic metronidazole 500mg 4 times a day for a week
 
I was diagnosed with Crohn's colitis. My symptoms were lots and lots of diarrhea (very little bleeding), perianal fistula, abscess and a fissure (that bled sometimes). I could handle the diarrhea, it was the other three that caused me the most pain and discomfort. I rarely had any stomach pains. When I did I think it was from the antibiotics more than anything. As others have said, lots and lots of symptoms and unique to each individual. That was what was most frustrating to me. Hearing that others had success on a certain medication. I would try those same medications and would have no luck. Hope you get things sorted.
 
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