Do I really have Crohn's?

[ImDan]

Hi all,

I'm 24 and was recently told I have 'Crohn's colitis' and given Pentasa to take 6 a day indefinitely.

I am really confused if I actually have Crohn's or not? Fortunately I don't have any of the usual symptoms, I don't get stomach pains, diarrhea, bleeding etc.

My story is I used to train Muay Thai almost every day and in January I took a hard trauma to the stomach that caused a perforation in my small bowel that was operated on. Months later I noticed a tenderness in a specific area (where my small bowel is) so I had a CT scan and colonoscopy that highlighted an inflamation in my small bowel that is consistent with Crohn's colitis.

My doctor simply laughed when I asked him if there's a way to tell if I 100% have the disease. I told him I really don't want to be on long term medication but he assured me that Pentasa has no side effects (is this true?). He also said my condition will be unaffected by my diet and I can eat and exercise how I like (not sure how accurate this is either?).

I'm just left with so many questions,
1. How can I be certain it is Crohn's and not just inflammation left from my injury?
2. Now I'm taking Pentasa - how can I know if they're actually doing anything if I have no symptoms?
3. Is this a medication I can eventually get off or will I have to take it forever?
4. Can I continue to train Muay Thai - or does Crohn's cause a weakness that could perforate if I took kicks/knees/punches to my abdomen area.

I'd really appreciate any insight or advice you guys have. I've been pretty distraught the past few days, I don't know anyone with Crohn's to talk to about it.

Thanks
Dan

 

[Clash]

It's strange that you say he found crohns likely in your small bowel when the dx states crohns colitis which is crohns in the large bowel. CD in the large bowel and generally in the bottom end of the small bowel (lower end of the terminal ileum) can be visualized with a colonoscopy as well as biospied.

Pentasa does have few side effects. It is approved for ulcerative colitis since it treats the top layer and UC affects only the top layer of the bowel. Since CD is transmutation and affects all layers of the bowel Pentasa isn't usually as effective. Some with very mild CD do find it works for them.

Inflammatory blood markers like CRP can alert you to whether the CD is being controlled as well as fecal calprotectin stool test and of courselves scopes and imaging.

Most people with CD use some form of med throughout. Although some are able to discontinue meds it is often not a good idea as the disease is cyclical and will most often return without treatment.

If you are uncertain about your dx or lack confidence in your GI then a second opinion might be a useful option. A second set of eyes can never hurt.

 

[Deanne]

Hi Dan, I'm in the same situation. I don't have any symptoms of Crohn's either but I was diagnosed during a colonoscopy. So mine is a definite diagnosis. I fortunately have (at the moment) a mild case and it doesn't stop me living. I take my Pentesa each day and am living a relatively normal life. I would be asking your doctor for a colonoscopy or a fecal calprotectin test, these are probably the best ways to get indication of what the level of inflammation is. I get a calprotectin test done every six months, this tells my GI how my inflammation is going because I have no symptoms.
Pentesa is the mildest Crohn's medication you can take, my GI describes it as 'a step up from an aspirin'. Some people control their symptoms with diet, but I'm not that disciplined so I take my medication (for now).
Read through this forum cause their a lot of people with different levels and symptoms of Crohn's Disease. I found this forum a great help and have learnt a lot.

 

[ronroush7]

Hi all,

I'm 24 and was recently told I have 'Crohn's colitis' and given Pentasa to take 6 a day indefinitely.

I am really confused if I actually have Crohn's or not? Fortunately I don't have any of the usual symptoms, I don't get stomach pains, diarrhea, bleeding etc.

My story is I used to train Muay Thai almost every day and in January I took a hard trauma to the stomach that caused a perforation in my small bowel that was operated on. Months later I noticed a tenderness in a specific area (where my small bowel is) so I had a CT scan and colonoscopy that highlighted an inflamation in my small bowel that is consistent with Crohn's colitis.

My doctor simply laughed when I asked him if there's a way to tell if I 100% have the disease. I told him I really don't want to be on long term medication but he assured me that Pentasa has no side effects (is this true?). He also said my condition will be unaffected by my diet and I can eat and exercise how I like (not sure how accurate this is either?).

I'm just left with so many questions,
1. How can I be certain it is Crohn's and not just inflammation left from my injury?
2. Now I'm taking Pentasa - how can I know if they're actually doing anything if I have no symptoms?
3. Is this a medication I can eventually get off or will I have to take it forever?
4. Can I continue to train Muay Thai - or does Crohn's cause a weakness that could perforate if I took kicks/knees/punches to my abdomen area.

I'd really appreciate any insight or advice you guys have. I've been pretty distraught the past few days, I don't know anyone with Crohn's to talk to about it.

Thanks
Dan

First of all, what you eat does affect the disease. There are foods and beverages I can't consume anymore. Second, I was on Pentasa and they took me off.

 

[ronroush7]

Hi Dan, I'm in the same situation. I don't have any symptoms of Crohn's either but I was diagnosed during a colonoscopy. So mine is a definite diagnosis. I fortunately have (at the moment) a mild case and it doesn't stop me living. I take my Pentesa each day and am living a relatively normal life. I would be asking your doctor for a colonoscopy or a fecal calprotectin test, these are probably the best ways to get indication of what the level of inflammation is. I get a calprotectin test done every six months, this tells my GI how my inflammation is going because I have no symptoms.
Pentesa is the mildest Crohn's medication you can take, my GI describes it as 'a step up from an aspirin'. Some people control their symptoms with diet, but I'm not that disciplined so I take my medication (for now).
Read through this forum cause their a lot of people with different levels and symptoms of Crohn's Disease. I found this forum a great help and have learnt a lot.

I wish they had this forum when I was first dx.

 

[ImDan]

First of all, what you eat does affect the disease. There are foods and beverages I can't consume anymore. Second, I was on Pentasa and they took me off.

Thanks for all your replies.

Can I ask why they took you off? Are you off all medication now?

Is it normal for doctors to want to take you off Pentasa or do they feel safer with you taking it?

 

[ronroush7]

They switched me to Entocort. I saw a specialist later on. He took me off the Entocort. I am on Stelara, Lialda, Colestpol, synthroid (for my thyroid) and prevacid for acid reflux.

 

[steffers27]

Hmm...yea my dad was recently told he has Crohn's, the doctor said he was 100% sure it was. But, the test results were inconclusive. They are starting him on anti inflammatory drugs and considering surgery however I'm worried this is all a bit premature as my dad has been a heavy drinker all his life, to the point of being a functioning alcoholic and his inflammation only started when he decided to stop drinking without medical supervision. I know my dad has probably stressed the fact that his daughter has Crohns and has also probably been less than honest about his drinking. How can they really know if the inflammation isn't just a withdrawal reaction?

 

[ronroush7]

Not sure.

 

[Bunty]

I don't find any foods are out of bounds for me regarding the crohns, I eat and drink as I did before my diagnosis. In fact I'm having to eat more fruit and veg now, even though I've always eaten at least my five portions a day, because if I don't I get slightly constipated. I was told by my IBD nurse that no food is out of bounds, but if you find a particular food gives you a problem, avoid it, just like anyone else without crohns would do.
My recent diagnosis of steroid induced diabetes has had more of an impact on what I put in my mouth to be honest, I almost feel like I'm poisoning myself sometimes if I sneak a tiny bit of cake or something...
I was taken off pentasa due to having breathing problems on it. It's not a side effect which affects many people but it certainly did me, as soon as I stopped taking it my breathing returned to normal.
Bunty x

 

[Axelfl3333]

I,ve been on pentasa for 5 years and haven,t had any ill effects mine was diagnosed by colonoscopy and my last scope two weeks has come back normal so it's helped and I,m probably going to be kept on it .my dr is happy it's safe on the diet thing there's loads of different opinions so eat what your comfortable with.as was said on an earlier reply crohns is cyclical and can and does go into long periods of remission.good luck all the best

 

[ronroush7]

It's strange that you say he found crohns likely in your small bowel when the dx states crohns colitis which is crohns in the large bowel. CD in the large bowel and generally in the bottom end of the small bowel (lower end of the terminal ileum) can be visualized with a colonoscopy as well as biospied.

Pentasa does have few side effects. It is approved for ulcerative colitis since it treats the top layer and UC affects only the top layer of the bowel. Since CD is transmutation and affects all layers of the bowel Pentasa isn't usually as effective. Some with very mild CD do find it works for them.

Inflammatory blood markers like CRP can alert you to whether the CD is being controlled as well as fecal calprotectin stool test and of courselves scopes and imaging.

Most people with CD use some form of med throughout. Although some are able to discontinue meds it is often not a good idea as the disease is cyclical and will most often return without treatment.

If you are uncertain about your dx or lack confidence in your GI then a second opinion might be a useful option. A second set of eyes can never hurt.

Clash, I have been told I have Crohn's Colitis but on most recent visit to my gi I was told the reason my case is complicated was because it is in the small bowel.

 

[Clash]

ronroush7, since CD can appear from mouth to anus it would make sense if for you at dx they only found inflammation in the colon and dxed you with crohns colitis then later active inflammation appeared in the small bowel.

But the OP stated AT diagnosis they said he had active inflammation in small bowel yet the report says likely crohns colitis.

Here is the forum's wiki definition of crohns colitis:

This is simply the term used to describe Crohn's disease which only affects the colon. Another term used to describe Crohn's Colitis is granulomatous colitis. It is usually distinguished from Ulcerative Colitis by the type and pattern of Inflammation. However Crohn's colitis can be misdiagnosed as UC. It is possible for Crohn's colitis to later spread and affect other areas of the digestive tract (in which case it would be referred to as Crohn's disease). Approximately 20% of Crohn's patients have Crohn's Colitis.

 

[ronroush7]

Thanks

 

[ImDan]

Clash, I have been told I have Crohn's Colitis but on most recent visit to my gi I was told the reason my case is complicated was because it is in the small bowel.

Could I ask why having it in the small bowel is a complication?

I believe my Crohn's is currently limited to this area, but unsure if this is a 'good' area to have it? Do you think it's likely to spread in later life?

 

[ronroush7]

I don't know why it makes it complicated. Does anyone else know? I have had more than one fistula and an abscess.

 

[Clash]

The area of the terminal ileum of small bowel and first part of colon(ileocecectomy CD)is the most common area for CD.

I'm not sure what you're meaning by more complicated. It's important to know the location because some meds like 5ASAs (pentasa, asacol etc) are developed to release by pH and pH varies by the location of the bowel. Other meds that are location specific include entocort.

Also, if the disease is located past the terminal ileum in the small bowel then a scope is not going to reach for visualization and biopsies so you have to use imaging and pill cam and forego the biopsies.