Could anyone possibly shed some light?

[ben90]

Hi everyone! First post on these amazing forums!

As of yet I am undiagnosed. I've been through the normal story as far as tests and biopsies go, but as of yet havn't had any serious operations etc. My doctor has told me to 'not forget that cronhs is still a possibility' which in my mind makes me think hes sure thats what it is, but doesn't have the evidence to diagnose as of yet. The only clue is that I have a slight thickening of the wall somewhere in my intestines/bowel.

My main symptom is that about every 6-8 weeks I undergo a pretty painful experience which I can only describe as a sort of achy cramp in the lower right side of my abdomen. It starts off as a very light feeling and gradually grows and grows until it gets to a point where I can't stand straight. this lasts for around 12-16 hours and then just dissapears!
Im left with quite a tender pain at the same location for a couple days afterwards.

From what that docs have seem they have ruled out any possibility of appendicitus.

I was hoping that somebody may of had similar experiences or symptoms for those that are already diagnosed.

Thanks for any feedback, and I have to say I feel very lucky as some of the stories on this board really are pretty incredible!

 

[Nica]

That sounds kinda like the pain I get from a stricture, but more often than every 6 weeks...

 

[Rebecca85]

That sounds like the pains I used to get, from ulcers in my ileum. But yes, far more often! (every day or every other day before diagnosis/treatment)

 

[tummygirl]

I was having "attacks" every 6-8 weeks, almost always on a weekend. It would start off as slight discomfort.... then I would get bloated, more discomfort, more bloating, then diarrhea, vomitting and hours of severe pain. I went to the ER a few times when my husband was worried about me because I couldn't even keep water down.

On my third trip, the Drs were talking appendicitis (lower right abdomen pain), but then they did a cat scan and discovered it was a small bowel obstruction. Mine was due to significant narrowing from scar tissue from past inflammation combined with active inflammation.

It almost always was related to me being 'worked-up' (my word for stressed-out/nervous/excited/anxiety) and also to certain foods.

If I were you, I would start by keeping a food/mood vs. pain journal to bring to your doc next time; and maybe just adjust your diet so you aren't eating anything hard to digest (like lettuce/whole tomatoes/corn etc).

Hope you figure out what's going on.

 

[ben90]

Thanks for everyones replies, these strictures have definately got me thinking.

I was having "attacks" every 6-8 weeks, almost always on a weekend. It would start off as slight discomfort.... then I would get bloated, more discomfort, more bloating, then diarrhea, vomitting and hours of severe pain. I went to the ER a few times when my husband was worried about me because I couldn't even keep water down.

On my third trip, the Drs were talking appendicitis (lower right abdomen pain), but then they did a cat scan and discovered it was a small bowel obstruction. Mine was due to significant narrowing from scar tissue from past inflammation combined with active inflammation.

It almost always was related to me being 'worked-up' (my word for stressed-out/nervous/excited/anxiety) and also to certain foods.

If I were you, I would start by keeping a food/mood vs. pain journal to bring to your doc next time; and maybe just adjust your diet so you aren't eating anything hard to digest (like lettuce/whole tomatoes/corn etc).

Hope you figure out what's going on.

Wow thanks so much tummy girl! there are definately things I can relate to in your post.

My last attack which was a few days ago I was dosing off to sleep and my mum opened the door which made me jump. The result was a pretty big increase in pain for a few seconds afterwards. It got me thinking and I did actually realise that these episodes always came around times when I have been particularly stressed, nervous and anxious etc.
It would make sense, too, as they all release hormones which will flare up any inflammation.

Can I ask if you have anyway of stopping this from happening and/or what they did to help?

gracias!

 

[Silvermoon]

Yes, I would have to agree with strictures, but of course that is only something your health care professionals can diagnose for you .

IF it is a stricture - small, low firber/low residue meals/snacks more often. The low fiber/low residue (ie, no seeds, decrease protiens) prevents the intestine from having to "work too hard" to digest the material. The smaller meals more frequently is so your body won't try to push too much "food" at once through a narrow openning.

The other thing is, if it is a stricture, is that there is going to be decreased elasticity, as it is tough like scar tissue. Normally our intestine is fairly "stretchy", but where there is stricturing or scarring, is is not elastic or stretchy, so the body has a harder time passing stuff through the area.

Depending on where the stricture is, sometimes it can be "fixed" using a colonoscope, rather than having full-on surgery. But I would DEFINITELY get it checked out, and keep pestering until someone takes care of it, as if they are left too long they can cause LOTS of problems - like total blockages, or possible ruptures in the intesting.

Hope you find some relief soon.

 

[wolfem]

I was having symptoms like that for 5 years, but I stupid me, I just ignored it. The pain I experienced last only 2 minutes and would disappear. It happened about every 3 months but then started to become more frequent throughout the years. When it started becoming frequent, I finally went to the doctor but he didn't think I had crohn's until it got much worse and I mentioned it to him later.

 

[tummygirl]

Well, I think the only thing that will really help is to go to the Dr. to figure it out. It could be many other things!

They investigated my gall bladder, and checked me for other stuff, considered IBS, considered a bad GI infection, put me on Buscopan etc.

When they finally did the cat scan, it was because I was vomiting severely for over a day, and it was obviously stuff that was in my system for a long time and was poisoning me. They gave me a nasal gastric tube (which was, for me, the most traumatic medical experience of my life!) hooked up to a pump, and then admitted me and put me on Prednisone through my IV. Once everything in my stomach drained out of the nasal gastric tube, they removed it, and then a day later, removed my iv and gradually I ate clear liquids, then all liquids, then soft foods, and the low fibre diet. I was in the hospital for a week.

It happened again recently, because I thought my new medicine had fixed me I decided to eat a small side salad with my meal. Bad idea. I ended up with the same incredibly uncomfortable pain. It was intermittent, but had me moaning in agony! I have to avoid any food that remains as large pieces when it goes through my system.

 

[ben90]

The puzzling thing is that I eat a fairly high fibre diet, with plenty of veg every day (and protein for that matter due to weightlifting) and still the pains only come every 6-8 weeks. I am always pretty regular going once a day almost every day.

I would imagine then if I did have a stricture I hope it should atm be fairly small!

I will start cooking my veg very well and making sure I chew everything until my jaw falls off! haha.

I am due an MRI scan soon so possibly something will come up. I have already had a colonscopy and the doc said everything was normal, so I assume the problem lies deeper.

Thanks so much everyone really appreciated.

 

[DustyKat]

Hey ben,

My son that was diagnosed with CD last week had somewhat similar symptoms to you, in that he had pain in right iliac fossa. The difference was once his started it stayed but it never was as severe as yours, his was only a mild niggling pain.

Do you know where the thickening of your bowel is?

Dusty.

 

[ben90]

Hey ben,

My son that was diagnosed with CD last week had somewhat similar symptoms to you, in that he had pain in right iliac fossa. The difference was once his started it stayed but it never was as severe as yours, his was only a mild niggling pain.

Do you know where the thickening of your bowel is?

Dusty.

Hi Dusty!

Sorry to hear about your son, im happy to hear his symptoms aren't too severe and i'm sure he will be fine!

No, sorry, I can't actually recall the doc saying where abouts it was, just that there was a slight thickening. The pain is always in same place, around the Ileum, a little reading has led me to believe that this is also the most common place to develop Crohns, so I would make a guess that its around that area.

 

[DustyKat]

Perhaps you are right and you have small stricture. The area you describe your pain is where my son's is located and he has CD in the terminal ileum and it is the most common region for CD to be located. If they have ruled out a grumbling appendix then I think with the location of the pain and the thickening of the bowel it would be wise to keep CD on your radar.

Dusty.

 

[ben90]

I just got my MRI appointment through the post and its scheduled for the 30th Dec, so not too bad! The worst thing though is that I can only eat LIGHT SNACKS for 2 days beforehand! Ahhh! that is going to be the worst part for me! Haha.