Scared and stressed

[Nick8]

I was diagnosed with Crohn's in August of 2010 after a plethora of tests. I passed 2 pints of almost pure blood in February 2010. I underwent a colonoscopy and endoscopy which both came back clean. The Doctor seemed to think it was Merkel's, so I underwent a Merkel's scan, which was clean. He then ordered a Barium enema which came back clean. Finally, he refereed me to a Gastroenterologist in August of 2010, who ordered a capsule endoscopy, and discovered Crohn's. He started me on Pentasa, then in February of 2012; he ordered a second capsule endoscopy that got stuck in my small intestine.

I walked around with it in there for 4 months, because I neglected to go to the follow-up. When I finally did return, he persuaded me to have it surgically removed. I agreed, so I underwent surgery the first week of October this year. The surgeon at UK said that 7-8 feet of my small bowel was diseased, and she did 6 strictureplastys to preserve the length; she removed around 8 inches were the camera was stuck and resected it.

I returned to school 9 days after the surgery, and I managed to maintain a 4.0 GPA. The last week of November 2012 my Gastroenterologist started me on Humira; I hated giving the shots. I developed tremors in my hands and severe muscle weakness. Around a week after my second dose I started having severe chest pain, and joint pain in my hips. The Humira really seemed to be helping the Crohn's, but the side effects were awful. My Crohn's symptoms don't seem to be like others on here. I am always constipated with abdominal pain, I hardly ever get diahrea. I don't know what to do now, he says I can't take any of the TNF drugs, and I'm experiencing symptoms after eating all the holiday foods that I should have avoided:sign0085:

 

[SarahBear]

Hi, Nick! Welcome to the forum!

While constipation isn't typical, there are other forum members who deal with that. Others still who go back and forth between constipation and diarrhea. Whatever your problem, you can find someone around here to relate.

Are you still taking Humira? If you'd like to look into others' experiences with Humira, you can check out the Humira subform here. Has your doctor mentioned any other options for you?

Also, congrats on keeping up your grades! I know it can be tough!

 

[Nick8]

Sara, I've stopped Humira, and I am scared to take drugs at the moment. He mentioned Imuran and some other immuno-suppressor. I go back in 2 weeks to see him again. He refuses to give me steroids, so I've never taken a steroid ever in my life. My Gastro doc doesn't have the greatest bed-side manner. THANKS for your concern and help connecting with others. BTW I live in Eastern Kentucky

 

[Grumbletum]

Hey Nick and a big welcome to the forum. Sounds like you've really had a baptism of fire when it comes to your introduction to Crohn's. It does seem like your doctors are being very thorough. I'm curious as to why the gastro won't prescribe steroids? Mine is pretty lacking in bedside manner too - he reminds me a lot of 'House', when I can get hold of him that is!

 

[Earnellzwifey]

Hi Nick way to go on keeping up your grades while being so sick. I was curious as to why you are unable to take any of the TNF medications.

I am almost sure that being a GI must involve having to be rude as a qualification. So many of them are jerks, mine included but he is the best in my area. Hope you get some results soon.

 

[Nick8]

My GI says that I can't take any of the TNF's because of the reaction I had to Humira. He didn't elaborate as to why

 

[David]

Hi Nick and welcome to the community.

If you had 7 feet of diseased small intestine it is pivotal that they start to manage this disease properly as soon as possible. I'm not sure that I agree that the other biologics should be off the table but I'm no doctor. What I do know is you need to get that inflammation down, and fast. As such, I'm a big fan of the shotgun approach. Some ideas for you:

- Western Medicine - Whatever your doctor suggests. It sounds like it'll probably be Imuran/azathioprine/6-MP - the problem here is it takes upwards of 3 months to really kick in so you need some bridges.
- Dietary changes - Enteral/elemental nutrition, [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot and we now have a juicing subforum located here.
- 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 and one in childten have had great results (see the stuck thread 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, and magnesium as well as a host of others. But those three first ones should definitely be checked. Do not blindly supplement vitamin D and B12, treat these as medications and get your levels tested first. Although the blood test for magnesium is pretty useless and I strongly suggest you eat foods high in magnesium or discuss supplementation of it with your doctor.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas. I'm personally a big fan of tumeric (curcumin) and strongly suggest utilizing it if your doctor is ok with it.
- 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.

I wish you all the best.

 

[acheallova]

Hey Nick, welcome.
Well said David. I would also like to ask about your pain, have you spoke with your doc about it? There are a couple little non medical tricks that might provide some releif- 1. Heating pads/hot water bottle 2. Warm baths/soaking.
Hope things turn around for you. Constipation can almost be worse than diarrhea sometimes. It feels way more full and extreme pressure/pain. I would try eating very small ( almost just snacking) meals frequently throughout the day to help cut down on pressure. I would discuss with doc, but my GI told me to take a mild stool softener ( not laxative!) when i have my constipation attacks- these are over the counter like Miralax® ( PEG 3350- polyethylene glycol) or Colace® ( docusate sodium) to help from getting backed up and making issues worse.
Best of luck to you! Keep us informed. -hugs-

 

[Nick8]

Thank you, David

I will utilize all of your helpful advice, You are very helpful I don't know anyone else with Crohn's in my area; this site has been a minor miracle for me with some great ideas for me to try. I have tried Marijuana and it definitely helped with stress and pain. It's illegal in my redneck state though. I will try all of your suggestions. I think when I go back to my GI I will ask him if I can try Humira again at a lower dose. It really helped my constipation.

 

[Nick8]

Well, I went back to my GI today, and told him about my Holiday flare. We decided to to try Cimiza. It will take a week to cut through the red tape and get it approved. In the meantime, I think I'm gonna go to my family doc and get a checkup. I noticed a that some red patches on the back of my leg and arms have flared up recently. I showed these to a Dermatologist and he thought it could be psoriasis. I have continued to experience intermittent chest pains; I have been taking Coq10 and it seems to help the chest pains, has anyone else ever taken Coq10? Thanks for all the support!:biggrin: