Newly Diagnosed with No Symptoms

[tragichamlet]

I was just diagnosed with Crohn's Colitis this month (2 weeks ago). I regularly ran the Rock and Roll Half Marathon in Vegas which helped raise awareness for Crohn's, but other than that, I really had no idea what this disease was....I went to have an elective colonoscopy because my mother had rectal cancer in her late 40s. She continued to live for 15 years longer and passed away from ovarian cancer. I feel completely healthy. I have no symptoms so i was shocked when the results of my colonoscopy showed i have mild Crohn's disease. I was ordered to take that blood test that starts with a "P". I can't remember the name. My GI doctors said my case is so mild that people with active Crohn's disease would love to have my colon. MHe said there was superficial inflammation and ulercation. He said it was subclinical Crohn's. My husband had a colonoscopy too and I compared his photos to mine and they dont look different but then again, I'm not a doctor. I had to look up what subclinical means...it means no symptoms showing yet. I asked the dr if i needed to take medicine, and he told me he was going to prescribe me anything becuase I have no symptoms at all. He said the medicine had side effects and he didn't want want to give me medicine when I already felt completely well. I have regular stool (1 or 2 times a day). My stools are soft. it is not diarrhea, but they are soft. I have no pain...no weight loss...no appetite loss. In fact, i'm hungry all the time. I dont know if I should take medicine or not. I'm also really concerned about the genetic factor. I have three children. What is the statistical percentage that they could get this disease? I consider myself very healthy. I dont smoke, drink alcohol. I am an avid exercise person. I run like 6 half marathons a year so it was shocking to find out I have Crohn's. Initially, I was very depressed, but I'm trying to be optimistic. Is it normally not to have any symptoms? I feel so healthy and have never been in pain or sick.

Can you have a normal life with Crohn's? What about exercising? is it bad for people with Crohn's? Also, what about taking fish oil and green tea? Does that help?

I have run the Rock and Roll Vegas for the last three consecutive years, and now, I'm going to make a concerted effort to run it every year knowing that it is benefitting Crohn's and Colitis.

Thank you everyone for the support. I enjoy reading all the posts.

One last question....when you have Crohn's Colitis...that is Crohn's in your colon.....does that mean it will not spread to other effected areas?

sorry for all the questions.

 

[David]

Greetings and welcome to the community.

Wow, you're certainly an interesting case. Please take no offense to my use of interesting as I understand how hard this is on you and you're no doubt feeling all sorts of emotions It's just that most people go through a lot to get a diagnosis and I think you're the first I've seen that was diagnosed in this manner.

Anyway, the test your GI likely prescribed that started with a P was the Prometheus Diagnostic.

A few suggestions:

1. I realize you have Crohn's Colitis but I'd discuss the idea of having your small intestine checked out as well if they haven't already just to make sure there's no active disease there. Tests might be a pillcam (capsule endoscopy), MRE, or small bowel follow through. The colonoscopy tends to only reach to the terminal ileum and doesn't see some of the places Crohn's can hide.

2. If they haven't, I'd STRONGLY suggest having your doctor run a fecal calprotectin test. This is a great test to determine intestinal inflammation. If this came back high, I think I'd want to be medicated. It will also be a good way to get a baseline of your disease activity so that you can be monitored closely without having to get a colonoscopy all the time. Blood tests help as well (have they done tests like CRP and ESR)?

3. If a parent has Crohn's disease, data shows their children have around a 10% chance of getting it.

4. Definitely keep exercising!

5. Did the doctor diagnose Crohn's disease based upon the visual signs of the colonoscopy or did the biopsy results come back positive?

All my best to you.

 

[Karen]

Welcome aboard ... I am sure that you will find what your looking for here on the board ... there is a lot of wonderful people here that are willing to help out !!!

 

[rollinstone]

You are living proof that one can live a normal life with crohn's I suspect there are actually a fair few people out and about that don't have any symptoms but if they were tested their biopsies could reveal "crohn's", as for exercise, you may find your healthy active life style is why you don't have any symptoms, I would definitely stick with it

 

[nitty]

Welcome!

Do you know what might have caused your mum's rectal cancer? I'm asking this because she was very young when she had it, and it's possible she may have had similar gut issues to those that you are having now - i.e. sub-clinical inflammation. Long-term inflammation is a significant factor in causing bowel cancer.

It's for this reason that it may be worth taking a mild anti-inflammatory drug as there is evidence that using these to keep inflammation at bay can help to prevent some bowel cancers. I'm talking about a 5-ASA drug like Mesavant or Pentasa, NOT non-steroidal anti-inflammatories (like ibuprofen or diclofenac) - these could make matters worse.

A family history of bowel cancer would make me want to take preventative action if it could be done without side-effects. I, like many others on here, take a 5-ASA without any problems at all. It could be worth giving it a try to see if you are OK on it.

It's a difficult decision to make, especially as you feel so well at the moment. Just make sure that whatever choice you make is an informed one and then you'll feel happier about whatever path you take.

Good luck!

Nitty

 

[JenGC]

Hmmmmm, I've been doing quite a bit of research on alternative diagnoses for my terminal ileum ulcers, and along the way, came upon some research that talked about diagnosis of Crohn's through scope or escope, with histopathology, but asymptomatic. They did a long term follow up, and found that the presence of symptoms prior to diagnosis was the best indicator for whether or not the disease would progress. So if you are asymptomatic, there is definitely a chance you'll stay that way.

Having said that, I am also part of an autoimmune arthritis board, and our motto is "fear the disease, not the meds" - keep a good watch on your condition, and be willing to take medication if things change.

 

[tragichamlet]

Thank you so much for your responses. It is very helpful and comforting.

I did take some fecal test. I'm not sure what it was but they wanted three stool samples. I dont know if it was nerves, anxiety (because i've become consumed with worry), but the stools were softer than normal . The doctors said the biosopies from the colonoscopy suggest Crohn's disease, and he said that because it was scattered (only in three spots: my cecum, sigmoid and rectum) that also suggested it. My terminal ileum was normal, but maybe I should push for the testing of the small intestine?

Thanks for letting me know about the genetic statistical percentages of my kids getting this. I'm mostly afraid of that.

I dont know what caused my mom's rectal cancer. She thought it was due to exposure from chemicals during the Vietnam War. She is the only one in her family that had cancer. They surgically removed the cancer infected part of her rectum, and she was fine for 15 years. Unfortunately, she passed from ovarian cancer.

I see my doctor on Monday to find out the results of that stool and Prometheus Diagnostic test (thanks David for the name).

I am a worry wart. I've become obssessive and ever since, I've been analyzing my stool. I've even asked my husband to examine it to see if it looks normal. I'm trying to read up on what I can do....I am not afraid of taking medicine, but I dont want to do it unless it is necessary.


My GI doctor has basically told me that i will be on the 3 year plan for a colonoscopy and that if I ever develop symptoms, i will go and see him and we will manage it then.

I'm over worrying and making myself sick.....I feel like i'm a ticking timb bomb and I'm just waiting for an explosion of pain and symptoms. I know that is not good....My mind and my worry is a worst enemy.

 

[tragichamlet]

One other thing, David, my doctor said the same thing when he went over the results of the colonoscopy and biospy....he said, "your results are very interesting...."

 

[Lustforlife]

Try not to worry yourself too much. It's ok to do some research and understand what to look out for, but you can easily overdo it in the beginning of learning about Crohn's.

In my case, things started in November of last year, and were pretty bad for a few weeks, then slowly improved, then got really bad for a few more weeks, and slowly started to improve. All in all I was sick for almost 3 months, and, knock on wood, I "don't have Crohn's". My long-lasting illness was never really explained, so I was left to wonder if its just the beginning of Crohns, and I'm like a ticking time bomb too...and one day it'll go boom. I struggled with these thoughts for a while, but what helped was a combination of a) less research, and less obsessing, b) therapy - discussing handling stress and not always jumping to the worst conclusions (my tendency) as well as taking things as they come, and c) family support. My mom was a huge support through it all, and was sort of like my dumping ground when things were weighing on my mind, as well as reassurance when I felt like "things would never be normal again".

Anyway, hope you find something useful out of the above!

I heard once that if a parent has Crohns, a child is 30x more likely to have it than general population. My guess is that since about 700k have an IBD in America (varies by study...), 30x700k is 21 million. With 315 million in America that's...calculator says...6.83% chance. So then the chance of none of your three children having IBD ever (assuming they are independent of each other; not likely) is 81%. Enjoy today, and worry tomorrow if it ever happens. That's the best we can do.

 

[nitty]

My Crohn's was in the same places as yours, pretty much, and was diagnosed by colonoscopy. My symptoms were very acute and presented more like Ulcerative Colitis than Crohn's. I didn't have tests on the small bowel because my consultant thought I would have more in the way of what we think of as 'typical' Crohn's symptoms - I had urgency but not diarrhoea, no abdominal pain or eating problems, but I was passing lots of blood and mucous. I was therefore diagnosed with Crohn's Colitis.

Since then I have had a further flare with more extensive symptoms which made me feel that perhaps my small bowel is now affected, but I don't think the original diagnosis was wrong at the time, just that unfortunately it then spread further. Many others will have it isolated to the large bowel with no spread.

 

[blazeking]

Crohn's is very finicky..one day you'll be thinking you don't have it and the doctor made a mistake, and the next your world caves in and you enter a long term struggle. Crohn's progresses over time. But it will always be there. I had pretty much no symtoms either and took no meds until I had symtoms, and while I don't regret those 5 years not taking meds because I don't believe pentasa or 25 mg azathioprine would have prevented the flareup, I do believe I could have done more to prevent it. Diet, exercise and stress reducing techniques can prolong remission I believe, but will not stop a flare up.

If you notice anything weird or strange happening, such as watery diarrhea after certain foods or unexplained weight loss or more pain in your abdomen then you are normally used to, get on meds immediately. I can describe crohns flare symtoms as a mix of the flu plus food poisoning that doesn't go away quickly.

 

[Lissa73]

Welcome tragichamlet You're story could have almost been the mirror image of mine except my Mom had colon cancer so I got a colonoscopy to make sure I didn't have what ultimately took her life. What a shocker to wake up in recovery and the Dr. says "no polyps but we found lesions and I think you may have Crohn's disease based on where the lesions were found. We are sending them to the lab" One week later they confirmed it... Not really any symptoms... I have to wait until April 5th to see what if anything I need to do now.It is easy to worry yourself sick though.I've read all over the internet and freaked myself out a few times, but here's hoping to our continued good health !

 

[tragichamlet]

Lissa--it's nice to know I'm not the only one. I guess we should not be complaining and should be thrilled that we dont have any symptoms. I dont know, but it's probably psychological, but suddenly, i feel warmth in my abdomen. It's not really pain, but I think it is all psychological. I go to the doctor today to go over the results of my blood and stool test. Did they have you do that as well? Please let me know what your doctor says on April 5. Hopefully, you and I will continue to be asymptomatic. I wonder how rare or common it is to have Crohn's disease and no symptoms.

I also was reading that Crohn's can kind of settle or calm down as you get older? is that true?

 

[nitty]

I suspect that my mum may have Crohn's with no obvious symptoms.

About 40 years ago she had a prolonged problem which was almost identical to my own - PR bleeding, diarrhoea, etc - and she had a sigmoidoscopy which was all they did at the time for her type of symptoms. She took sulfasalazine for a few months and hasn't had it since. She just mentions an occasional 'niggle' in her lower right quadrant area. It never even occurred to her that it might be Crohn's, but now that I have it we have both wondered whether she has, too.

She has no intention of mentioning it to her doctor and is happy to carry on as she has done for the last 40 years since it happened.

I am living in hope that I may follow in her footsteps, and so I would consider coming off the Azathioprine at some point, but carry on with the mesalazine for life to cover any low grade inflammation.

 

[Lissa73]

tragichamlet the only tests I had were the colonoscopy where they took 3 biopsy's from the lesions they found and the other week I had a small bowel series where you drink a lot of something the thickness of paint and they x ray your intestines every 15 minutes until it passes through your system. I'm hoping that is the only testing I will have to do!Prior to all this , I NEVER went to the doctor.

I think everyone is different with Crohn's though. Some get worse, some get better and some probably manage to stay the same.

I'm making up a list of things to bombard my doctor with when I finally do get to talk to her.

 

[shalin]

Welcome to the forum. From my experience every GI I talk to says exercise and good diet is the key to controlling this disease. I also have both Crohn's/Colitis. I have not been on any medication for years. They suspected I had it for at least 5 yrs before I was diagnosed but at that time i was very active and a healthy eater. Just remember stress is a key trigger to this disease and the more you worry and stress about it can do damage. Just continue your life as you have is my suggestion and yes you can continue to have a normal life with the it. I have had 2 children and a succeful carreer since i was diagnosed over 17 years ago. I do believe my daughter will have to be tested for it soon she is starting to show signs of the ibs and is always having tummy aches in thelower right abdoman. but this is life and you take the good with the bad and live on.

 

[Josephine]

welcome to forum. a least you know what have then let doctors lead up and down dark alley.

 

[blazeking]

Welcome to the forum. From my experience every GI I talk to says exercise and good diet is the key to controlling this disease. I also have both Crohn's/Colitis. I have not been on any medication for years. They suspected I had it for at least 5 yrs before I was diagnosed but at that time i was very active and a healthy eater. Just remember stress is a key trigger to this disease and the more you worry and stress about it can do damage. Just continue your life as you have is my suggestion and yes you can continue to have a normal life with the it. I have had 2 children and a succeful carreer since i was diagnosed over 17 years ago. I do believe my daughter will have to be tested for it soon she is starting to show signs of the ibs and is always having tummy aches in thelower right abdoman. but this is life and you take the good with the bad and live on.

I have a different experience with my GI who has been handling crohn's patients for many decades. He claims diet and exercise do not matter because he's seen all kinds of people on different diets and exercise regimes that have flared and has seen some that eat poorly and exercise poorly and had no symptoms for many years. I disagree to an extent, I believe diet and exercise can delay flares but not stop them. I believe that because I did everything right and I still flared, badly. Of course, I was flare free 28 years of my life, up until last august but diagnosed at 23.

 

[tragichamlet]

I got the results back from that Promethus test. It came up negative for IBD. My stool test came up negative so basically, the doctor isn't quite sure what is wrong with me. He said there was definate scattered inflammation as seen and biopsied during the colonoscopy, but again, I have absolutely no symptoms. I guess everything is inconclusive which is very frustrating because I want to know....I'm now on a schedule to have a colonoscopy every three years, and if I notice any symptoms, I'll see the doctor.

Is that Promethus test only like 70 percent accurate?

 

[nitty]

It makes you wonder what percentage of the population have some degree of inflammation and never know about it if there is no reason to examine them otherwise.

It's like doing CT scans on the brains of people over 65 or 70 - many of these will show areas of infarction, or tiny strokes, but only get discovered when something else gives cause for investigation. The damaged areas themselves may have caused no noticeable clinical symptoms for the person at all.

 

[Catherine]

My daughter had low iron levels followed by anemia leading up to dx of Crohn's but her actual physical symptoms were very mild until 6 months prior to dx.

She did have periods of severe pain lasting up 24 hours in the 2 years prior to dx, there were months between these episodes and we were always told they were gasto.

Her GI believe her extreme fitness levels masked her symptoms leading up to dx. She is considered a odd case.