My Story - Suspected Crohn's and it's Year 12

[James02]

Hi everyone,

I'm 39 year old Male. In 2009, I started getting odd symptoms in which I would get sick very often. Exercise, animal dander, and stress seemed to aggravate the symptoms. For years, I was convinced it was my exposure to my outdoor cats. Overtime, that theory didn't hold up and I sought out solutions in my diet and holistic doctor. I didn't try it all, but never found the silver bullet. This year, I saw my gastrologist and got a colonoscopy. The doctor told me I had Crohn's but the blood work was negative for Crohn's. In addition, the biopsy was inconclusive for Crohn's.

I started Sulfasalazine seven days after my colonoscopy and immediately got pain in my groin that wrapped around to my back. I discontinued after twelve days. I then have been on Penza which has not had any noticeable negative reactions. I'm 15 days in but not seeing any material changes except my anxiety & irritability seem to be better than normal.

I'm not even sure what to say in this story because I remain undiagnosed.

Crohn's would explain my odd symptoms I get over the years:

• Green music (frequent sinus infections) after moderate to intense exercise
• Periods of unexplained weight loss
• Unexplained bug bites
• Mosquito bite sites (skin reaction where I used to get allergy shots) whenever I exercise, drink alcohol, or related.
• Seasonal rectal itching, rare but periodic blood in stool in very light amounts
• Feeling better after any gut cleanse (ex. colonoscopy prep, after stomach bugs or flu, etc.. I feel better)

Anyways, this is my story. It's a journey. And I'd love to hear peoples thoughts, questions, or concerns. This is the first forum I been on for this type of thing. So, I got a lot to learn.

Pax Christi - James

 

[Scipio]

Hello and welcome,
Some of your symptoms are consistent with Crohn's and some are not - probably unrelated to Crohn's. To begin with, a skilled gastroenterologist doing a colonoscopy is a much more accurate assessment of Crohn's than any blood tests that are available, so I would take his/her judgment on that point very seriously. When you say that the biopsy was "inconclusive" for Crohn's, does that mean they couldn't distinguish between Crohn's and other similar inflammatory conditions such as ulcerative colitis? Or that they couldn't decide if your gut was inflamed at all?

Sulfasalazine is a very mild drug and not very effective in treating Crohn's. It's a better drug for ulcerative colitis. If you do have Crohn's you will likely need something stronger - immunomodulators and/or biologics. Penza is a proton pump inhibitor and is used for treating heartburn. It's not much good for Crohn's, although it can help protect the gut from damage from some other drugs such as aspirin.

The abdominal pain, weight loss, and blood in the stool are definitely common symptoms of Crohn's or other inflammation of the gut. The sinus infections, bug bites, and itchy skin, not so much. But remember that it is perfectly possible to have two or more things go wrong with you at the same time, producing a confusing array of symtoms.

My advice is to keep following up with your gastroenterologist to get a definitive diagnosis. Once you know for sure whether you have Crohn's the path of which drugs or actions to take will become much clearer.

 

[James02]

Once you know for sure whether you have Crohn's the path of which drugs or actions to take will become much clearer.

Hi Scipio - thank you so much for the feedback.

It's encouraging to know that my gastroenterologist is better at predicting Crohn's than blood work. I did not know that. I was starting to get discouraged, but your feedback tells me to stick with this. More options and things can be done. I'd love nothing more than to feel normal once again for the first time in over a decade. Pentasa 250MG (*Note I previously said Penza, but meant Pentasa) doesn't seem to do much at this point, but watching it closely.

Thanks again!

 

[Scipio]

Pentasa is a brand name of mesalamine, which is a chemical cousin to sulfasalazine, and both of them are primarily drugs for ulcerative colitis and are not very effective against Crohn's. Also, my guess is that your initial bad reaction to sulfasalazine is based on the fact that sulfasalazine is also chemically related to the sulfa antibiotic drugs. And like sulfa drugs it often stimulates allergic reactions. Mesalamine is not a sulfa drug and thus is less likely to be allergenic. This aligns with your better experience with the Pentasa.

So keep pushing until you get a firm diagnosis. My recommendation is to ask your gastroenterologist what more needs to be done (which tests and/or procedures?) to settle the Crohn's question once and for all.

Feel free to ask all the questions you want. There are many experienced Crohn's patients here who are willing to help,

 

[James02]

@Scipio Thank you.

The sulfasalazine reaction felt like a hernia. It's dissipated over time, but it's going on over three months. I can at least bend over to tie my shoes without pain, just mild discomfort now.

I have just reached full dose of Pentasa (4 pills/day) just a day or two ago (I initially started with 1 pill/day b/c of fear of reaction). I woke up this morning with soreness in my life side. North of where the pain was from Sulfasalazine. Ugh... something tells me it's related to taking more Pentasa but I'm just hoping it is nothing worse.

Discomfort, pain, anxiety, depression is the name of the game for me. I never expected I had Crohn's because my stool is normal.

Thanks again for reading my story and letting me share. It helps when you have no one else that understands.

 

[Scipio]

Discomfort, pain, anxiety, depression is the name of the game for me. I never expected I had Crohn's because my stool is normal.

Same here. I've never had much diarrhea to speak of, but I certainy do have Crohn's. In fact as a general rule ( but with many exceptions) Crohn's involving the large bowel produces a lot of diarrhea, but Crohn's confined to the small bowel (like mine) often does not. In fact small bowel Crohn's may sometimes produce the opposite effect - constipation.

 

[James02]

@Scipio Good insight. I did not know that. Thank you.

My gastrologist mentioned he saw the Crohn's go into the small intestines but we have not yet done any tests besides the colonoscopy. How long did you have Crohn's before you were diagnosed? Did your quality of life improve (remission) eventually?

 

[Scipio]

I was diagnosed with Crohn's about 10 years ago, but I had symptoms for a good 10 to 15 years before that. I don't recall exactly when the symptoms started. They sort of crept up on me and slowly got a little worse year by year. But I was always able to shrug them off or attribute them to other causes. I wasn't thinking about Crohn's at all. It wasn't until I came down with a severe case of anemia requiring emergency transfusions that I saw a GI to investigate where and why all that blood disappeared.

 

[James02]

@Scipio Thanks for sharing. I can relate to saying I have had symptoms for 12 years now and they have generally gotten a little worst. I can relate to attributing them to other causes.

Do people feel diet is a critical component to this? Holistic doctors in addition to gastroenterologist?

 

[lukesjr]

@Scipio Thanks for sharing. I can relate to saying I have had symptoms for 12 years now and they have generally gotten a little worst. I can relate to attributing them to other causes.

Do people feel diet is a critical component to this? Holistic doctors in addition to gastroenterologist?

I think you will get mixed responses on that. Some people respond well to diets, and its a functional cure. Some don't respond at all. I am on the side of try everything you can before biologics. Biologics are amazing and have helped people immensely. But they are not a cure either, they are just suppressing symptoms. I think both holistic and conventional treatment have a place and you should do both. For example, go to the NIH trial website and search some natural treatments that have been tested. In one study wormwood was as effective at gaining remission as other treatments.

One thing is for sure though, we are at the cusp of a medical revolution that will change health forever. Although medical industry takes a lot of heat for being all about money, they are innovating exponentially right now. We have real reason for hope, probably now more than ever.

 

[James02]

@lukesjr Thanks so much. It's interesting that I did a parasite cleanse earlier this year (before I even started with the Gastro doctor); and the parasite cleanse recommended Wormwood (among other things, such as Garlic, etc.). I did feel pretty good during that time frame. It has me wondering if there is a correlation now.

It's encouraging to hear the medical industry is innovating exponentially now. I have had the misconception or bias that it's all about money for sometime. But, I want what everyone else wants, a healthier life. It's great to have hope.

I'll check out the NIH trial website for more.

 

[lukesjr]

here is a article to get you started.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4367210/

 

[James02]

@lukesjr Very interesting, looking up the cost of those supplements now!

 

[lukesjr]

A couple of things about supplements.

They are not drugs, they can take a while to work, like months to work.

Be careful buying supplements Choose your provider wisely. There are a lot of fraud companies out there and it is tough to tell who is the real deal. If you are buying on Amazon, be careful on who the seller is. I usually try to either go with sold by Amazon or by the actual company. 3rd party provider have been known to sell fakes and expired stuff.

 

[James02]

@lukesjr Good advice, I tend to stick with some name brands for that reason. Or otherwise, products that have high reviews and such. I'm pretty tempted to bust out my bottle of Wormwood and see what goes down. I been feeling like a truck ran over me the last 10 days.

 

[lukesjr]

@lukesjr Good advice, I tend to stick with some name brands for that reason. Or otherwise, products that have high reviews and such. I'm pretty tempted to bust out my bottle of Wormwood and see what goes down. I been feeling like a truck ran over me the last 10 days.

even name brands on amazon can be faked, so check who is selling that name brand. You can see it right below the buy button. For worm wood, make sure you follow the research dosing guides. I can't remember exactly, but I think it was something like 500mg 3 times a day. But if you google wormwood for crohns that study will come up.