Wondering what is normal with crohn's(?)

[Adam1971]

wondering what is normal with crohn's(?)

Hi everyone. I am still pretty new to the forum, and to my dx of crohn's (2 eeks ago). I just wanted to describe where I am at with symptoms, treatment, and some of my questions because I know there is a bunch of experience here. I kind of have the feeling that the general answer to all my q's is "yeah-totally normal-hang in there", but I want to ask anyway.

So, 2 weeks ago the GI doc said "yes-you have crohn's" on the basis of a colonoscopy and biopsy that revealed a stricture in my terminal ileum, and lots of inflammation, redness, swelling, etc. He also said I have a small internal fistula. Later that week, I started entecort. The symptoms I was having included lots of cramping right after eating, lots of tenderness in my lower right abdomen (assumed to be the inflamed ileum), and very inconsisten bowel movements-from constipation to diarhea. After starting the entcort, the pain in my abdomen went away. I have also completely changed my diet- just liquids, scrambled egg (to take the entecort), and crackers/soup. No whole grains, no veggies, no spice, etc. The digestion has calmed down a lot, so I am sticking with the liquids for a while I think. However, after less than a week of reduced inflammation in my lower right abdomen, I have the pain and tenderness back almost to what it was before seeking help. On top of all this, I started humira on Wednesday, which went pretty well. I have not had diarhea since starting the entecort. On the contrary, I am more constipated than anything else.

My biggest question has to do the pain in the area of the terminal ileum. I am kind of afraid of the stricture becoming a blockage, and surgery, etc. I would love any advice on what to watch for and what not to worry about.

I love this forum and read it all the time now. You all are great!

Adam

 

[Leebie3]

Hi Adam!

Welcome! I'm new too

I can't really help but just wanted you to know I'm here and can relate..

xoxo

 

[carolhew]

Adam, I was prescribed entocort when I was diagnosed last June and was pain free for only 2 weeks. Pentasa was added and later increased, but my pain continued to increase. I developed a stricture that was found on a CT scan. The entocort was obviously not working. I have been on prednisone for over 2 months and have been tapering for 2 weeks, it has worked well, no pain. It has horrible side effects! I also just took my second dose of Humira a week ago. I am finally starting to feel better! Good luck!

 

[Sailorluna]

Hi Adam,
In the leadup to my blockage I had horrible gurgle sounds. Literally sounded like a coffee pot peculating.

After a few months of that the pain started ramping up. The main sign when it was blocking was the vomiting. In the beginning only when I ate red meat and later no matter what I ate.

I hope this helps a little. The best advice I can give you is to tell your GI if your symptoms change and never discount vomiting.

Good Luck!

-Barbara

 

[Artificial]

Hi Adam,

I had the exact same symptoms! Unfortunately my stricture is bad enough that Im now waiting for surgery. My main symptom of it getting worse was nausea and vomiting. I started being sick every now and then until it got to the point I was puking up everything i had. Also I had really bad gurgling sounds to and I have this kind of lump I can feel on my lower right side that tends to be a bit bulgy when things are getting stuck.

Hope that helps and I hope you get some relief with Humira x

 

[Adam1971]

Thanks for all the thoughts and experience. I guess I ill have to wait to see what I will need. Over the past 2 days, I have only been able to go once with the help of colace. And now I feel bloated and yucky, despite very little food today. When the stricture is slowing things down, is constipation normal? Just curious.

Thanks again.

Adam

 

[Irene3]

Hi Adam. I agree- major gurgling before blockages, and also, I had the pain generally in the right side, where the stricturing was, then when I started obstructing (though I wasn't diagnosed and had no idea at the time), id get this horrible pain behind/just above my belly button. After a few obstructions, I knew as soon as the cramping started there, that I'd most likely be throwing up, or at least doubled over with pain within an hour, so I'd try to get whatever done- tidy up, ect, knowing I wouldn't be doing much more then laying on the floor later. It's because the food you eat with major stricturing, needs to push itself back up into the stomach, and out. It's our bodies way of helping the bowel not need to digest, but you'll know by the pain that somethings really wrong with your bowels. And the nausea is horrid, not like a stomach flu, but full obstruction is imdescribable. Hope you don't have any !!!
Constipation...some on here say they have it. I guess if your large bowel is working fine, then without grains and fiber, it would be inevitable. I have had constant diarrhea for years, so I can't relate to that one, but you get constipated past the ileum (which I had recsected, so it wouldn't be your stricter. Usually stricturing comes with so much inflammation surrounding the area, that your large bowels are inflamed and have very loose stools. But ask your GI for a 'luquid' or 'powder' form of fiber maybe, to help your large bowel cope with the low residue. Hope it helps. Best wishes.

 

[archie]

Hi Adam when I had the inflammation at the TI I was on pentasa and pred as the inflammation got worse my symptoms of general malaise, tiredness, pain, fever and weight loss all got progressively worse however it was a subtle progression and you soon forget what normal is! I took a sudden downturn with extreme dizziness and I mean extreme, nausea and more constant pain and that's when I had the abscess and perforation (but didn't know - I was still refusing to go to hosp lol). At this stage I fdidnt have any constipation just diarrhea to normal but pencil thin poo ( sorry of tmi). What I'm really trying to say is don't get complacent about 'normal' if it doesn't feel right it generally isn't so go get it checked... I should take a leaf outta my own book good luck and hope you get better soon

 

[Adam1971]

scared again

So now, after I start feeling a bit better-less abdominal pain, a little more energy, and a virtually all liquid diet, the cramping and weird diarrhea has returned.

I am very curious if others have seen this with diarrhea: after having enough diarrhea to be emptied out, I still have the cramps and the need to go, and when I do, I have this strange stuff comes out that is blobby, somewhat clear, and this time, has lots of little balls of blood in it. Is this "normal", should blood ever be considered ok? Is this just what its like to have a flaring state of Crohn's?

Thanks for your help. I am still just trying to catch my balance.

Adam

 

[Adam1971]

one more update

I know there is little chance of "too much info" on this IBD stuff, but I am still a little shy. So here goes...

I have been having urgent diarrhea today that always ends in involuntary, painful straining as if there is something left to pass. Nothing really comes out, and it hurts like burning hell. Has anyone else experienced this? Just curious.

I am going to the GI tomorrow, which is some comfort.

Adam

 

[SomethingIsMissing]

Hello,
I think sometimes when someone mentions 'normal' with CD they mean it is not uncommon to have it happen but it really is not normal.
The burning could be bile/ acidic fluid. It is often what is left when everything is pretty much out. (sometimes happens with 'the clean out kit for a scope too').
Before a blockage occurs sometimes a sound like a dripping leaky pipe can be heard, over and over in the same spot. kinda weird..A way to kinda know when a blockage is happening is with the 'waves' like a rhythm of pains. It is the bowel trying to push things through the narrowing. Eventually what can not go through comes back up. The pain is seriously different and intense, more so then any other pain and should be easy to tell. A fever is not always present.
Nutrition is very important. Ask your Dr. about liquid meal supplements like ensure, boost and generic brands. Malnutrition can often only add to difficulties. Sometimes as a stricture progresses even liquids become difficult and not tolorated.
Sorry for all you are going through. Good to hear you have a appointment.

Take care, my best to you!

 

[Adam1971]

Thanks for the advice and wishes. I will learn what that doc thinks tomorrow. I have not experienced anything as intense as described by everyone here, though the gurgling waterworks and pains seem like a dress rehearsal for serious restrictions in there. We'll hope for the best!

 

[SarahAnne]

The "blobby" stuff is probably mucus, I tend to get it a lot with diarrhea or sometimes just by itself. If I haven't eaten much and my gut starts to spasm, I will feel urgency and strain only to pass mucus. If you have inflammation it could be causing the mucus-y stools.

All of the symptoms you are describing are very common for inflammation/stricturing in the terminal ileum area. I have had two surgeries there, and I understand the pain you're going through.

Wishing you lots of luck, hope the meds start to help but don't be too worried if surgery is you're only option. I feel so much better after having surgery to remove my painful stricture.

 

[Adam1971]

Hi SarahAnne-

I actually just came from the doctor and he thought the same thing. He said he could feel where the stricture is and that its probably causing some blockage and a lot of discomfort. He still has hopes that humira will help open this up a bit. He also wants me to eat more, or to eat solid food, not just liquid forms of sustenance. He doesn't have to deal with consequences! Its good to hear that surgery is not 4 letter word, and may in fact be of great benefit.

Thanks for the information!

Adam

 

[archie]

Yes I agree surgery can give u great relief it's defo not the worst option. Hope you don't need it though. Blood is never 'normAl' what the doc say?

 

[xray]

I just read this, and it scares me a bit. I am undiagnosed, I suspect if it is Crohns it has been there for 16 years misdiagnosed as anxiety
(If so I was more or less in remission twice, for periods of about 7-8 years each time)

And this fits like a glove:

"Gurgling sounds coming from one spot"
"pencil thin stools"
"nausea"

I have a LOT of symptoms that fit with Crohns, if not all of them.

Amongst them:

Mouth ulcers
Shifting between constipation/gas and diarrhea
Nose sores that do not heal/heal incredibly slowly
Joint pains in hip, iliosacral joins, lower spine, neck.
Neuropathy symptoms
Stomach cramps
Hemorroids, but to the point when they happend, that the entire anus feels swollen, cracked and sore.
Blood and mucus in stool.
Eye ulcers and frequent infections (about 15-20) the last 10 years

btw; Antibiotics help my joint pains, my stomach and neuropathy symptoms, despite being prescribed for other issues...where others complain that antibiotics mess up their stomach I always feel its such a relief to be on one...

Now the gurgling sound that comes from a specific spot, i can actually feel things slipping through that spot now and then. But it's not in the ileum area (right side if I understand correctly) it's more a bit to the left of my center, a little below my ribs.

Anyone that can guess if it can be a stricture, and what warning signs do I need to be on the look out for?

(I should mention I have had a colonoscopy ordered, finally after all these years, I should have an appointment in a few weeks)

 

[Dazzafarr]

Hey,
I'm still undiagnosed so I'm not really going to suggest anything really. All I know is a gluten fee diet helps with my stomach. I was violently throwing up when I ate normal. "crap basically" I changed my diet completely and it suppressed my symptoms. Some foods even upset my bones. Some gluten free foods still hurt like soy sauce etc. with crohns everyone has different symptoms, different intolerances so there is no real diet for crohns.
I hope the best for you and hope your pain subsides.

 

[Dazzafarr]

X-ray,

Sorry to hear you have been dealing with a lot of symptoms. I sometimes get pencil thin stools too. I think the doctor told me that it was constipation. I have never gotten ulcers in the nose but get regular ulcers in the mouth.

Just keeping getting tests and try be as calm as possible as its a long process. I'm undiagnosed myself and there isn't much more you can do than keep searching. Hope you get a result from your colonoscopy to end the anxiety.
Goodluck and keep us updated

 

[tots]

Adam1971-

With my original diagnosis I had a stricture- very painful! I was on a liquid diet for 6 months. Clear liqids- then full liquids. By the time I could eat again solid food did not even appeal to me!!

My Entocort seems to be working but- I ate a Hot Pocket last Wed and have been sick ever since. I dont know how long remission takes or is expected to take. All I know is it looks like a liquid diet again for awhile!

:voodoo::ybatty: