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Crohn's Colitis- need info

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Posted 10/7/2009 8:37 PM (GMT 0)
Hello there:

I am a relatively newly diagnosed Crohn's patient, and am trying to get as much info as possible on my condition and need some help in this regard.

In March 2009, I was diagnosed with Crohn's disease after a colonoscopy. Further, after serum and capsule endoscopy tests, this diagnosis was further specified as Crohn's Colitis.  I am on 2.4g Lialda daily and no other meds. Except for a few odd sensations in my stomach area and soft stools in the morning, i am doing reasonably well.

My questions are to people with this type of Crohn's (Colitis), or have near and dear ones going through this same ordeal:

1) What has the progression of disease been over the years?

2) What are some of the typical symptoms of this type of Crohn's?

3) Any advice or watchouts?

Thanks and take care.

Posted 10/7/2009 11:18 PM (GMT 0)
Hey rummy,

I'm sorry about your diagnosis but glad to know you're doing reasonable well. 

I currently have Crohn's Colitis, too, meaning my disease (for now) is only located in my large intestine.  I'm aware it will (probably) eventually spread to my small intestine so for now I consider myself lucky.  I've learned from being on this board over the years that those who have Crohn's where the small intestine is affected are more likely to have more serious symptoms and problems.  So when I'm sick, I ALWAYS focus on those who I know have symptoms MUCH worse than me.

So far I've dealt with 2 huge flares.  The past 2 years have been pretty much non-stop exhaustion from the flares.  My flare last year lasted 8 months.  I wasn't out of that flare for long before another 5-month long flare started this year.

Colonoscopies: that's how my GI determines the progression of my Crohn's.  I've had 2 so far: one in 2004 and one in 2007.  There was no change between the two which was GOOD news.

Meds: I truly believe every Crohn's patient should ALWAYS be on a maintenance drug - for the rest of their life.  That's the Lialda for you.  However, there are people on this board who think differently than I do about this issue.  I'm sure some will share their stories so you can decide what's best for you on that subject.  I just know with ME, I started feeling a lot better after I first started taking my maintenance drug - so I decided I was HEALED and started tapering off the drug.  Next thing I know 6 months later, I'm getting sick again.  

Of course, you can go into a flare even when you've been very dilligent in taking your meds.  Just know that sometimes you will flare for absolutely NO reason.  It'll make you CRAZY.  You'll wonder what you did wrong. rolleyes   You'll question yourself (what did I eat?). It's MADDENING.  I get through those times by just reminding myself that is the NATURE of this disease.  Sometimes there just isn't any reasoning for the flares.

When I flare, I have a bunch of different symptoms: 

Diarrhea (loose BM's)

Gas

Cramping

Abdominal pain

Vomication (vomiting & pooping at the same time)

When I start waking up in the middle of the night with my bowels, I know things are starting to get really bad.  My ankles will swell TERRIBLY - to the point I can't walk or drive for about 2 weeks.  My Iron levels get low so I become anemic which makes me weak & extremely fatigued.  Weight loss is always an issue for me.  During my flare last year, I dropped 30lbs in less than 2 months.  All of that coupled with malnutrition from malabsorption causes things like hair loss, dry skin, bone loss and overall weakness for me.

Well, now that I've brightened your day...!!! tongue    You'll find this board to be a God-send as a newbie.  You'll find yourself coming here for answers and support and just a place to GRIPE! I would have been lost without this board if it hadn't been around when I was first diagnosed.  So even though I hate I need to say it, WELCOME to the Crohn's forum. :-)

Posted 10/8/2009 1:15 AM (GMT 0)
I have crohn's colitis, for the last 18yrs (the entire time of being sick with CD), crohn's colitis is as kittikat says, it's CD affecting the colon, but that doesn't mean that your CD can't affect other areas at the same time...when I first got sick it was in my colon, rectom, TI and anus (with perianal crohn's skin tags) it has remained constant in my colon and on my anus with the anal skin tags and comes and goes in my rectom (proctitis)...the same meds used to treat ulcerative colitis are used for crohn's colitis (meds that are targeted to reach the colon like asacol and imuran).

Everyone is different with symptoms even if they share the same location (colon for example) as other patients and degrees of severity are not limited to where the CD is affecting, one patient with crohn's colitis may be much worse off than another patient with small bowel involvement, it just varies from person to person and it can from flare to flare as well.

Bleeding tends to be more common with crohn's colitis and even more so if the rectom gets inflammed as well (proctitis) when there's disease activity in the rectom then rectal meds the sooner the better are necessary. Other than that really, the symptoms are the same as when the disease is active in the small intestine, which are typically D and urgency, many also suffer with gut pains regardless of where their CD is active and some like myself don't, but I have found during really severe flares I tend to get excrutiating lower back pain (also more common with crohn's colitis). Anal disease tends to be a little more common for those with crohn's colitis in the form of perianal skin tags, abcesses/fistulas...fissures can be common in any crohnie regardless where their disease activity is and typically when mainly constant D is involved.

Check out my sig to see what I do and use to help with my crohn's colitis, fibre supplements and probiotics as well as bee propolis (unless you're allergic to bees) have all been a huge plus for me, but remember everyone is different and that includes what works for some doesn't work for all.

Hope this helps :)
Posted 10/8/2009 2:44 AM (GMT 0)
Hi Rummy, I just wanted to welcome you to the board. I also have crohn’s colitis. Although I knew I had crohn’s for about 4 years (since diagnosis), I only recently found out it is Crohn’s colitis specifically.   My symptoms are the same as what everyone described above. This last year I’ve had my worst symptoms, with enlargement of my existing skin tags, a fistula, fissures and abscess. It all sounds horrible and it really was, but the BIG difference for me is finding a great doctor who will give you access to the best meds and set you on the right path. The reason everything got so bad for me this yr is because my last gastro was completely incompetent. I am currently on Remicade, had my 1 st infusion 2 days ago, hoping that it will heal; my fistula. I am already feeling better tummy-wise. I also get up a lot through the night. I don’t often lose a lot of weight through a bad flare, because most of the absorption of nutrients is done in the small intestine.   Any other questions don’t hesitate to ask, and welcome to the boards! I hope this place provides you the solace it has provided for me and so many others     
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