"Bubble Guts" ribbon shaped stool, extreme exhaustion, blood in stool what gives!

[89deuce]

Quick edit** I have great iron levels I am told but don't know what other tests they test my blood for every 6 months.... Last test came back perfectly normal.

So I have had Crohns for about 4 years now and was on Pentasa with some good side effects but it made it harder to poo because of my "ribbon" shaped stools that the doc says is "nothing to worry about." At least thats my opinion.

So as of late I was only taking 2p twice a day. I stopped taking them recently because it seemed like it was making me really tired. And honestly I really don't get back on them until I know a flare up is coming on. I like to think I have light crohns and my doc said I was in remission or whatever and said I could get off and on them anyways...

BUT, as of late while taking them or not I have the same syptoms. I have bloody stool that is bright red so I'm guessing it would be coming way towards the end?? I don't have any cramping or pain. I have ribbon shaped stools. When I wake up I have a really upset stomach it seems with A LOT of gas and what I call bubble guts. And the biggest crohns side effect seems to be extreme exhaustion as of late. hmmm other than the occasional having to go INSTANTLY or well within 5 minutes or risk a fun time driving home from work lol.

Anyways does this sound like anything to anyone that is a more serious symptom of crohns?? I'm just a little worried as I have never felt like this before... I have a appointment on Thursday next week and hope that I can get some answers. My doc's husband has crohns so usually she is on it but I know everyone has different symptoms so who knows if that actually helps lol

 

[gibby]

Hey 89deuce, welcome to the forum!

The symptoms you describe seem like a moderate flare up, the ribbon shaped stool is because of swelling in your large intestine, and the bleeding means you have open ulcers along the way, or tissue breakdown....the more urgent you get for going to the loo is probably a sign of worsening flare, so i would def recommend getting checked out at your appt.

I would recommend taking your pentasa as regular as you can remember (or horse pills as i fondly call them ) as i used to have a cycle like that when i was younger, would only take them if i felt a flare coming on, and 9 times out of 10 it stopped the flare up getting worse, but that 1 time it didnt, and i got a pretty nasty flare. My disease was progressively getting worse anyway so cant entirely blame it on not taking the pentasa regularly but that was the beginning of it so with me that was the case, and started the whole prednisone/flare up cycle.

it may not be the case for you and you may continue to have mild symptoms that will be fine but because i have been bitten i am twice shy! keep taking the meds and see what your GI says...and let us know how you get on!

big hugs x

 

[gibby]

and i love the 'bubble guts' term....i am gonna steal that and use that in the future...in fact i have 'bubble guts' right now! ooh i like it!

 

[89deuce]

HAHAHA yeah bubble guts is the only way I can describe waking up by the noise of your insides rumbling around lol. Your right I think I will deffinately take the higher dose of 8p a day like I was taking when I first got crohns... When I did that it did seam to stop the symptoms for the most part and didnt take that long really...

Ill let ya know what the GI says on Thursday. Now I am going back to bed as I have a major head cold and a fever wooohooooooo what a great Friday lol

 

[Walt]

bubbles and ribbons

Sorry for your suffering 89deuce.
Ya, everyone has different symptoms and at different times.
Crohn's disease comes in a lot of ouchy flavours!

I think the loud belly racket is something most of us get, sooner or later.
I read someone saying to think of it as internal gas.
Makes sense, but I prefer to think of it as a violent bowel storm.

There is a technical term for it, Borborygmus:
(I'm too new to this forum, so my wikipedia link is not yet allowed)
But, bubble guts sounds pretty good too!

I have had bright red toilet bleeding for years. sigh
When I get ribbon stools I know that I am very sick.

Hope you feel better,
let us know how it goes with the doc,
hang in there,
Walt

 

[89deuce]

Sorry for your suffering 89deuce.
Ya, everyone has different symptoms and at different times.
Crohn's disease comes in a lot of ouchy flavours!

I think the loud belly racket is something most of us get, sooner or later.
I read someone saying to think of it as internal gas.
Makes sense, but I prefer to think of it as a violent bowel storm.

There is a technical term for it, Borborygmus:
(I'm too new to this forum, so my wikipedia link is not yet allowed)
But, bubble guts sounds pretty good too!

I have had bright red toilet bleeding for years. sigh
When I get ribbon stools I know that I am very sick.

Hope you feel better,
let us know how it goes with the doc,
hang in there,
Walt

Its funny to hear that when you get ribbon stools you know your very sick lol my doc just kept telling me it was normal pretty much but ever since a couple months of me having been diag'd with it I have had them and I guess I have just been dealing with the fatigue and everything else just living like it was a normal part of my day I guess...

Anyways yep excited to finally go to the dr tomorrow which usually people aren't excited about lol. But you get what I mean.

I just remember the time when I would work 12 hours in a wharehouse and be physically fatigues but never mentally fatigued or like I feel now... I can't wait to get back to that point. My moms friend who has crohns also said she has the same tiredness that you can't even explain to someone who doesnt have it and have them truely understand. BUT, it was nice to hear that she recently got off the transfusion thing uhhh can't remember the name of it and was put on humera (dont know the spelling) and said the TIREDNESS IS COMPLETELY GONE!! Edit** Just looked it up wierd its for arthritis butt hey I guess thats inflamation too. Odd I suppose. Then again I don't know much about it. OHHHHH looks like you probably have to be on remicade first but really right now I could care less what they put me on as long as its not prednisone because I refuse to take that crap... Too many people that I know of have had bad experiences that outweigh the crohns symptoms

So wish me luck I can't effin wait lol If I had the energy back that I used to I'm not sure what the hell I would do with myself lol

 

[Crohn's 35]

Good luck with your doctor appt, I hope he can help you get back to normal. What ever your normal is! Keep us posted on what the outcome is. Hang in there!

 

[Dexky]

Good luck today Deuce!! Keep us posted.

 

[89deuce]

welllll went to the doc and had 5 vials of blood drawn lol Guess they want to check for everything under the sun which I suppose is good. I was put on, what is basically pentasa suppositories until I can have my colonoscopy on the 3rd of August! Which holy hell is really soon. Its been a couple of years and my GI says she wants to make sure nothing is wrong before she just throws me on remecade or something other than Pentasa. Hopefully the suppositories will tide me over. Seriously an awkward feeling when its going in and feels like its coming out LOL. Just had to share that little tidbit lol

 

[Crohn's 35]

HA, thanks for sharing that little tidbit lol. You have a good doctor and is looking after your best interest and not wanting to over medicate. Why use firehose to put out a candle? I have never did suppositories,only glycerin, and it is suppose to come out..sooner or later .

Aug 3rd....do you know what prep you have to take? Hope it is Pico Salax, best darn stuff lol. Keep us posted ok?

 

[89deuce]

Not sure about the prep because I accidently left my dr's note or prep note in the dr's bathroom when I was trying to give a stool sample. Oh yeah forgot about that part too. Too bad I was too worried about poopin myself on the way over so I made sure everything was completely out and nothing would come out int he dr's office lol.

Yeah and I don't want to be over medicated but its really hard to function currently so I am really hoping the suppositories at least help enough to make me a lil more awake during work.

 

[89deuce]

oh yeah time to take another Canasa 1000mg thats the suppository lol. Thennnn I get to do the business in a bucket and put it into some vials for the dr on saturday so some guy with a microscope can look at it lmao I don't envy his job lol. Sorry I have to make light of the situation and I have a slightly sick sense of humor lol

But I don't feel too bad about my colonoscopy any more since I asked my manager for a couple days off for it and he said he has one every year because he has a family history of colon cancer and has to have one every year... Would rather have crohns that the BIG C I suppose. Gotta look on the brighter side I suppose.

Sounds wierd too but I can't wait until my colonoscopy so I can get some stronger drugs. This fatigue is killer!!! And the horrible part is no one can really understand or doesn't seem to really think I am telling the truth about it. I tell them hey, you can't imagine the fatigue I get until you have experiennced it, its that bad. They are like ohhh come on deal with it or it can't be that bad.... Its VERY frustrating at this point and I just want to be like I used to idk sorry to vent a little I am just extremely frustrated right now with not wanting to or being really able to do much on the weekend. Its just very annoying and disheartening I guess you could say.

Ryan

 

[Rebecca85]

I have told people that the fatigue is because your immune system is fighting something and using all your energy- just like having the flu. Most people will have had the flu so can relate to that. Also it changes it in their minds from 'tiredness' to 'illness'.

 

[89deuce]

I have told people that the fatigue is because your immune system is fighting something and using all your energy- just like having the flu. Most people will have had the flu so can relate to that. Also it changes it in their minds from 'tiredness' to 'illness'.

Very good idea I kind of thought of that but never explained it that way... And in reality thats essentially how its being played out in our bodies

 

[89deuce]

Well went and had my colonoscopy and got the results of the blood workup... My white count was a little elevated but nothing crazy and that was it.

Got the colonoscopy done and they printed out all the inflamation they saw which was in about meh 15 spots but they werent all that bad I guess and they said the worse was right at the end which would explain the ribbon stools.

So all in all my doc much to my dismay kind of forced me to go on 40mg of prednisone a day for 1 month and then at that point I go for a checkup and will most likely be put on remicade. I think that sounds about right and I know the doc is lookin out for me but I am curious of your opinions as well. I have JUST started the prednisone today this morning and I swear my hips and lower area aches like I ran a marathon... Hope that goes away but other than that I had a TON I mean a TON more energy today and I only got 5 hours sleep because I couldnt sleep all that well last night... Amazing I hope for temporarily this works wonders