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diverticulitis misdiagnosed as Chron's disease

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Crohn's Disease
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Posted 2/20/2013 8:45 PM (GMT 0)
hi everyone,
I am 31 yrs old i was diagnosed with chrons when i was 21, it has never been controlled no matter what medicine i took, the only thing that kept it at bay was when they put me on steroids.
I was recently taken to hospital and taken for a CT Scan, the results of that was I had diverticulitis, which one of the pouches had perforated, i was very lucky as my body contained it, so after 4 days in the hospital with alot of iv antibiotics i am now home still taking very strong antibiotics..
My question is do you think i have been misdiagnosed all these yrs with the wrong disease? in reality from what i have been reading I do not fit the criteria as diverticular disease usually affects people over 60.
I have never felt that i had chrons disease.
if anyone has any info that would be great would love to hear others opinions.
Posted 2/20/2013 9:12 PM (GMT 0)
Can you let us know, how you were diagnosed and your symptoms? both at time of diagnosis and now?

I can tell you that steroids often is the med of Crohn's , and not as far as I know not for diverticulitis. So given steroids worked that is some clue it is Crohn's.

As for over sixty, I would forget that. Just cause it is average does not mean anything about an individual. Also, there is great success with controlling diverticulitis with a high fiber diet. Did you try that? Did it help?

I hope you do not have Crohn's but diverticulitis, but I can not give an opinion from the info given
Dave
Posted 2/20/2013 10:27 PM (GMT 0)
well when i was first diagnosed they did a colonscopy, first it was decided i had colitis than it went to cealic disease (sorry if i spelt that wrong). than chrons, my disease has never been control with all the meds i have always been sick the steroids slowed it down enough for me to get well but it has never been into remission.

back in 2004 - i found a ct scan that stated i had thickness of the sigmoid colon with promimence vessels correct me if i am wrong but that indicts diverticular disease doesnt it?
also i have always been told i dont have classic chrons, my bowel is good the only thing that is bad is the last bit of my bowel to my anus ... i believe they said the last around 15cm is scarred..

If you can of help that would be great
Posted 2/24/2013 4:46 PM (GMT 0)
princess, I had a "somewhat" similar experience. But, I don't understand why your diagnosis kept changing. I think once a biopsy showed crohn's, that should be definitive. Now, if you get celiac or diverticulitis on top of it, that's another story. I wonder if that is the case.

For my story. For years I had these horrible episodes of crippling left side pain, with diarrhea and then it would go away. Well, I was too scared to get a colonoscopy, so it wasn't until it got so bad that one day I went to the ER and the CT scan showed thickening and inflammation in my sigmoid colon. They did a colonoscopy and said it was negative..... told me it was IBS and sent me home on fiber. Well, I continuted to get those episodes and so one day in 2008 I ended back up in the Er and this time the CT scan showed diverticulitis. Went to a GI and when they couldn't get results with antibiotics, I went to Mayo clinic where they scoped me and said I had a rare form of a colitis called diverticular colitis. They tried meds for 2 years, I suffered terribly and finally they ok'd me for surgery after I begged for it in 2010. I've been fine until now. I was on the board today b/c my stomach is back to similar problems but at least the pain isn't bad... I was up all night with GERD, needed to go to the bathroom but didn't have a good one. I need to get a refill on my VSL #3 and hope that will get me back on track. I've had to use a lot of antibiotics the past year or so for UTI's caused by lack of hormones. I think (hope) my tummy is just out of good bacteria. I think that was a huge problem with me before. Once I had a test done that said I had 0 good bacteria in my stool sample. That is not good.

Do you have confidence in your GI doc?? You can always go for a 2nd opinion. And, I think general inflammation can cause thickening in the intestines. I believe I asked that a while back and that's the answer that I got. I do not think it is specific for any type of inflammation.

One thing I do know is that all these chronic GI problems are horrible for those of us who've had them. It causes so much distress, hopelessness and anxiety. And, I had a relatively mild case compared to others. I haven't been on the board much since my surgery but I can say for the 2 years that I was on here, it sure was a life saver for me. Good bunch of folks.

Good luck to you!!!
Posted 2/24/2013 8:49 PM (GMT 0)
Intestines and bowel are two different words for the same organs.

The digestive tract starts at the mouth, descends via the esophagus to the stomach and from the stomach across the body to the beginning of the small intestine from thence to the colon, the rectum and the anus.

The first part of the small intestine (bowel) is referred to as the duodenum, the second part is called the jejunem which then proceeds to the third part of the small bowel (intestine) called the ileum which is the longest part of the small intestine (bowel).
The distal (far) end 3 feet of the small intestine (bowel) is referred to as the terminal ileum.

The terminal ileum passes thru the ileocecal valve into the cecum which is the beginning of the large intestine (bowel) which is called the colon. The appendix drops off the cecum. The cecum runs into the ascending colon which runs up the right side of our body then turns across the body in what is often referred to as the transverse colon to the left side of our body where it turns downard and is then referred to as the descending colon which then turns back towards the center of our body in a section referred to as the sigmoid colon which then turns downward in the center of our body as the rectum which runs into the anus or anal opening where our feces are expelled.

So - in via the mouth, esophagus, stomach, duodenum, jejunem, ileum, ileocecal valve, cecum, ascending colon, transcending colon, descending colon, sigmoid colon, rectum, anus and out.

Ulcerative colitis is found only in the colon and can be cured by surgery. UC affects only the inner linings of the colon and spreads evenly.

Crohn's disease can strike anywhere in the digestive tract from mouth to anus. It can work its way thru the entire wall of the intestine (bowel) and perforate. Crohn's disease usually spreads unevenly, skips and jumps, leaving healthy intestine between areas of disease activity. The most common area for Crohn's disease to strike is the terminal ileum near the ileocecal valve.

I can think of "funner" things to have than Ulcerative colitis or Crohn's disease. *sigh*
Posted 4/10/2013 5:14 AM (GMT 0)
Hi everyone I finally got my results of colonoscopy I will give you a run down on what it says, any opinions would b great.

Sigmoid colon
Rigid lead pipe
Deep fissuring ulceration.

Stricture at recto-sigmoid
Musoca of transverse colon - more normal
Ascending colon - more normal.

Ileocaecal valve retracted but it patent.
Terminal ileum normal.

They believe I have chrons what do u think?
Posted 4/10/2013 7:02 PM (GMT 0)
We are not pathologists, but deep ulcerating fissures sounds like Crohn's. Crohn's affects deeper tissues than does ulcerative colitis.

In the end, though, your sigmoid colon sounds badly damaged. What is the plan to get you better? Surgery? It might be worth considering, but it important to understand that if Crohn's is the correct diagnosis, surgery is not necessarily a cure. It would solve the immediate problem of a stricture at the recto-sigmoid junction and the lead pipe colon.
Posted 4/11/2013 9:11 AM (GMT 0)
Well they are doing surgery, I will be either partial or fully losing my bowel. As it may be too damage to resew.
When I look back he made the diagnosis that it was chrons colitis? Any thoughts to why it would be diagnosed as chrons colitis?
I have been off all meds for 2 months and I feel great, ever since it perforated i felt so much better.
We are talking about I couldn't even go a week without meds. Now I'm going on nearly 3 months with nothing.

Guess would be good to hear from people that have more experience with bowel disorders
Thanks everyone
Posted 4/11/2013 1:12 PM (GMT 0)
I am not near the expert as many, but if it was me I would be on meds. I do not understand no meds.
I would insist on seeing the doc ASAP, and then understand the treatment plan, which might include surgery.
I would not wait and I hope you do not either.
I am doing well and I have not been off meds for one day since I was diagnosed
healing thoughts
dave
Posted 4/11/2013 2:03 PM (GMT 0)
The diagnosis of Crohn's colitis simply means that your Crohn's disease has affected your colon.

Ulcerative Colitis is an inflammatory condition that only affects the colon, whereas Crohn's can occur anywhere in the digestive tract. The fact that only your colon has been affected doesn't mean you don't have Crohn's.
Posted 4/11/2013 9:05 PM (GMT 0)
Thanks for your posts, yes its very wierd and I am getting second opinions on everything, I have been.fighting this for around 10 years in the whole ten years I have been unable to be off any Medicines, eg steroids, humira anything I have always been on something at some point due to getting very sick when off, now I have been off everything for as long as I said I am now feeling great, which.is very hard to take given the fact of how severe they say my disease is.
I know the plan is to have surgery because I'm way too damaged. May I ask any anyone would a Bartholin c yst cause problem I have had one for around 9 years now.

I give what I wondering is people with chrons would you b able to have no meds with a severe cases and also if you have ever seen pics from a sigmoid what did the large bowel around the rectum look like? My looks ok t has sore open skin from what I can see which looks sore and red but its only in a few places. There is a little white scarring.
Am I able to upload pics here?
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