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new diagnosis what to expect


Wed, January 16, 2019 10:06 AM

18 year old just diagnosed with Crohn's not sure how bad yet.  Lucky to have access to good doctor.  Cost him ROTC scholarship so now has to move forward.  He had loose stools and some weight loss during football, but none of the painful things i see hear (stomach aches, blood in the stool, ulcers etc)  Sterioids stopped inflamation and he is back to normal and gained 10 pounds back.  Question is going forward how much are people finding diet affects things.  I realize if diet fixed things no one will make any money off this, but at this point anything to help going forward I am in favor of, even if the help is somewhat minimal

FPO croninstc
Joined Jan 15, 2019

Thu, January 24, 2019 3:13 PM

Reply posted for JRWILSON.

Thanks seems like no one cause or cure.  However since no one in our family ever had any of this one thing that is starting to make me wonder is the HBP vacine.  Starting to hear primarily and in face to face with people who have no family history of this that there is a link to this vacine.

FPO croninstc
Joined Jan 15, 2019

Thu, January 24, 2019 10:30 AM

Reply posted for croninstc.

I have Ulcerative Colitis.  I was diagnosed at 23 years old.  I am the youngest of 3 sisters and was the only child that never had even a broken bone.  I was never sick as a child and we have no family history of IBD.  When I was diagnosed I was in disbelief- I did some research and found the most highly rated, actively involved in research GI in the central Iowa area- who also happens to be the director of the Iowa Digestive Disease Center.  I then had my PCP request him to take me on as a patient and thankfully he did.  He ended up confirming my diagnosis and I have seen him ever since.  I remember how hard it was for my mom to handle my diagnosis- she was convinced that my disease had to come from something, something that she could pinpoint to understand why her healthiest daughter was now fighting a lifetime disease.  Unfortunately my diease came on very quickly and I believe stress was a factor because my dad was going through some life threatening complications of his diabetes.  I also had a very stressful job where I was collecting from clients that had overdrawn accounts.  

Diet and handling stress are important factors to managing IBD but medication is also important.  I was really sick for the first 3 years after my diagnosis and was on and off steriods because so many medications were failing.  I finally approached my GI to discuss Remicade.  Seriously- this medication changed my life.  I went from not being able to walk a block because I was hunched over in pain and exhausted from having pain continuously to being able to live an active and normal life.  After starting Remicade I was able to leave an unhealthy relationship and later finding a healthy relationships and having 2 healthy pregnancies with my husband. 

I hope your son is able to find medication that can help him now before his disease gets worse.  Unfortunately I didn't have the option to handle my disease with an oral medication but am thankful there are other options.  I am sorry to hear this would impact his plans with ROTC.  Life will continue to have its ups and downs... I can't say that I a thankful to have this disease but my character has become stronger from the trials I have faced since my diagnosis.  I have become more understanding and compassionate to others understanding that not all diseases are visable.  

Good luck to your son- support is everything, he is lucky to have a parent that cares so much to get input from others.  I have learned more about my disease and treatment options by connecting with others in the IBD community than I have by reading the countless books to try and understand my disease.

FPO JRWILSON
Joined Jan 14, 2019

Wed, January 23, 2019 6:28 PM

Reply posted for croninstc.

Both. He can have mild chrons but if it isn’t not treated, it will become severe. 

FPO kelliwithchrons
Joined Jul 17, 2018

Wed, January 23, 2019 4:33 PM

Reply posted for kelliwithchrons.

Is the fact that he only had loose stools and some weight loss indicative that we caught it early or is this Crohn's light?  Or are the extra problems just coming?

FPO croninstc
Joined Jan 15, 2019

Wed, January 23, 2019 3:32 PM

Reply posted for croninstc.

I totally understand the reluctance. It took me a while to find someone in my family who had the disease before me. However, I have heard it doesn’t have to be Chron’s disease that will transfer through families and Any autoimmune disease can transfer another autoimmune disease. For example, rheumatoid arthritis can give a family member chrons. Don’t know how true this is but heard it from another’s chrons sufferer.  Maybe you should get a second opinion, but quickly. It took me a while to get diagnosed and the longer it took, the worse I got. This has made it a long hard struggle for remission. If a second opinion still says chrons disease, I would get him on medicine immediately before it gets worse. I understand that you don’t want your son on medicine for the rest of his life, but if it is chrons, it is important and necessary. Diet can help reduce the amount of medication needed, but not rid of it completely. It sounds like they caught it fast which is always good. When diagnosed, my mom asked my doctors if being on medicine for so long will hurry me or my organs, and they said no. It was much better for me to be on it. Plus, if the disease progressed and is not properly treated, you son can die from different complications. Which is why I believe if it really is chrons (only found by colonoscopy) you should have him treated by things other than diet 

FPO kelliwithchrons
Joined Jul 17, 2018

Wed, January 23, 2019 3:07 PM

Reply posted for kelliwithchrons.

am interested in the stress side, my 18 year old very laid back kid never any issues or trouble ever.  one thing that is different is for the first time in his life has a girl friend (kind of started all around same time).  Not blaming this she is a great kid same things no problems but cause for thinking.  No family history anywhere with the disease just came out of the blue.  Worst thing is if this is not stress or diet related will lose his ROTC scholarship.  Just hate the idea of meds automatically being the solution since no idea of the cause.  Just can't see any good ending of being on medication for 40-50 years.

Thanks for your responses

FPO croninstc
Joined Jan 15, 2019

Tue, January 22, 2019 4:35 PM

Reply posted for croninstc.

Diet is a component, but not the culprit. Everyone is different, but I avoid high risk foods such as raw vegetables (salads), dairy products, and spicy foods; however, I believe you can eat a plain baked potato and still have a flare-up no matter what you eat. You have to remember that Crohn's is not a digestive issue; it is an auto-immune disorder. Stress is the largest contributing factor, but of course it is impossible to avoid it. That is why our quality of life is so bad compared to others. A flare can occur anytime, with no warning, and it is literally impossible to function. You will find that most people do not understand this because it isn't visible to them which is frustrating, demeaning, rude and unsympathetic. They have no clue the hell that Crohn's patients go through, and as a patient it is infuriating. Best advice is to stay away from stress and the high risk foods I described, but it is no guarantee that a flare won't occur. Stay away from stress as much as possible; diet comes in 2nd after stress. I am on Remicade infusions, immuran, prednisone / anti-inflammatory, azathioprine, bupropion, Vitamin B&D, hormone therapy, Librax, and citalopram; all because of the Crohn's. I have been diagnosed with pre-osteoparosis which is a side effect of the Crohn's therapy. I have had drug induced diabetes because of the prednisone and took insulin for awhile. It's a terrible disease and I am still struggling with daily living because of it for almost 10 yrs now. Some days are ok, others are debilitating. Unfortunately, it affects your entire life; I have no personal life, I am fatigued and have no stamina, and need to be "bathroom ready" at all times. There needs to be more awareness; especially in the professional work world they don't have a clue; and they frankly don't care. It is tough and VERY frustrating.

FPO Dan Kberg
Joined Dec 22, 2018

Mon, January 21, 2019 12:37 PM

Reply posted for croninstc.

Honestly, diet is different for everyone with Chron's disease. For me, I have tightness in my intestines, so I am on a low fiber diet. I also developed lactose intolerance with the disease. However, this is not the only thing affecting my disease. I am also on NSAIDs (non-steroidal anti-inflammatory drugs), Remicade infusions every 2 months, and have taken two different steroids to get my inflammation under control. Stress and anxiety also play a major role in whether my stomach will have a good or bad day. Chron's disease is a chronic disease and diet itself will not cure it. It is important to find the diet best for the affected individual in order to help get the disease into remission, but diet alone will not do that.

FPO kelliwithchrons
Joined Jul 17, 2018

Wed, January 16, 2019 9:17 PM

Reply posted for croninstc.

how much do people put into diet affects, seems like arguing politics.  We are meeting with a diet expert in the area who has received nothing but rave reviews online and from people we know.  not only a big proponent of diet but in many cases wants diets without the meds

FPO croninstc
Joined Jan 15, 2019

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