New member, here is my story

[eluchs]

Well, for starters, my name is Ethan. I am 18 and completely new to this. I was diagnosed with Crohn's Disease in March, when I was 17. Since then, I have been on a bunch of different medications including: Entocort, Pentasa, Hyoscyamine, Pantaprazole and Flagyl. I did not settle well with the Pentasa, and after various visits to 3 different doctors, I was taken off of everything. I have had different tests such: Colonoscopy, Endoscopy, and a Flexible Sigmoidoscopy.

Along with the Crohn's, IBD, and Perianal disease. I am Lactose intolerant, and a touch of Celiac as well.

Now, I am in immense amounts of pain. Burning is a huge factor. Whenever I eat any sort of food, my stomach burns. I get sharp in my stomach, along with my rectum. I get very very tired, very easily. I have swelling in my knees, hands (around the knuckles) and in my elbows. I have trouble walking when my knees are swollen also. I have the feeling of being sick, so as if I had a cold. I have trouble just holding myself up, if that makes sense. I get very light-headed when I stand up, and I can not lift weights anymore because I am just too weak. That is one thing I am most upset about. I have painful and bloody BM's. I usually go about 5-7x a day.

I am not sure if this is because of the Perianal disease, but I always have the feeling that I am not "clean" So I am constantly changing clothes. Stress is a huge factor with this also. If I am in a bad situation, I immediately have to run to the bathroom. I don't know how to go about dealing with any of this now. I have been to 3 different doctors, as I mentioned before, and I am not satisfied with mine now. I am going again next week, but is it worth it to get a 4th opinion? I am completely at a loss in what to do now. I have an upcoming trip to Israel in December for 10 days, and it is my first time. I need to be able to go, and be comfortable. At this rate, I don't see myself going. I am never comfortable. I have trouble sitting through class each day. This is a terrible way to start off the school year, especially my first year in college.

Does anybody here have any advice? Anything is a help. Thank you all very much

 

[David]

Hi Ethan and welcome to the community. I'm so sorry you're having a tough time of it. Based upon what you're describing, I don't think your medication is strong enough AND I think you may want to hit the disease from all angles. My suggestions:

- Western Medicine - I would discuss the idea of either an immunomodulator such as 6-MP or Azathioprine or a biologic such as Remicade or Humira with your doctor. Your quality of life is suffering and you deserve to feel well again. You can read about all of these under our Treatment section or in our wiki.
- Dietary changes - Enteral/elemental nutrition would be my first suggestion to you. Learn about it under our Treatment section. From there, the [wiki]paleo diet[/wiki] or [wiki]specific carbohydrate diet[/wiki] would be worthwhile to try to transition to.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a fan of Low Dose Naltrexone. Two studies in adults have had great results (see the stuck thread in when following that link) and there are very few side effects. It's also not very expensive. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked. It also sounds like you're anemic and possibly low in protein.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas. I'm a big fan of tumeric (Curcumin) myself.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above. But hit the disease from every angle. You deserve to feel well again.

 

[Angrybird]

Hello Ethan and welcome to the forum, I am sorry to hear you are still struggling to feel well

I think David has already covered everthing but I did just want to say 'hi' and I will be keeping fingers crossed that you can be feeling better soon.

AB
xx

 

[Earnellzwifey]

Hi and welcome to the family :ghug:

I am sorry to hear that you suffering so terribly right now. If you are not satisfied with your GI keep firing them till you find one you like. This is your health, life, and well being. If they do not want to help you then don't help their wallets.

David did cover the bases very well but I would also get my potassium checked this caused me severe fatigue, pain, and even a psychotic break when it was low and having that many BM's it probably is low. Make sure you check your magnesium with it because if you mag is low your potassium will not regulate no matter how you try.

Sending big big hugs your way and hope you are better by your trip in december.

Have a good look around this forum there is great info out there and you are more than welcome to come and vent, fuss, tell of good time, or just talk to someone who can relate to what you are dealing with.

If you got a problem with poo oo:, then this is the family for you. :ylol: