Humira and surgery?

[Smoothie]

Hey everyone,

I have been on Imuran 100mg and Nexium 20mg daily for the past few months and I have recently had an MRI from which my specialist has confirmed that the medication doesn't seem to be working. He said the Crohn's has now spread to my large intestine. My small intestine and parts of my stomach have always been affected but now he said that he can see there is about 20cm of really badly affected area in my small intestine.

Ever since my dietitian put on on a low residue diet I have noticed that I don't really get any pain in my intestine area anymore..If I'm being honest, I haven't exactly stuck to the diet completely because I NEED fruit and vegetables in my life. Before I was diagnosed on Dec 20 2013, I was a vegetarian who stuck to a very strict diet of fresh fruit and veg, wholegrains, nuts, tofu and other soy products. Then I got sick and my doctor said I had to start getting red meat into me because I had lost so much blood due to the internal bleeding (they think was caused by all the ulcers in my body) and I had become severely anemic. So now I'm back to eating meat (not huge amounts and maybe twice a week), fresh vegetables and I will make a smoothie every morning with lots of fruit in it. So pretty much I am still eating the same as I was before I got sick minus nuts and wholegrains but I just don't have as much pain as I used to. Majority of the time I don't even feel sick.
BUT, there is this thing that has been happening to me once a week for the past 4 weeks. It will usually begin on Wednesday or Thursday where I will be sitting at my desk at work (I'm a business banker and I hate it) and I will just become soooo tired to the point where I will need to rest my eyes, then my eye site will get really blurring and I can't see, then my stomach will start churning and I will have to run to the bathroom to throw up. This then happens religiously for that whole day and it's horrible because everyone at work notices that I am sick and are constantly staring at me. When it first happened, I started throwing up blood so I went straight to emergency where my specialists came and made me have an x-ray to make sure my intestines hadn't completely closed. This was all fine and they put it down to constipation which had built up that week, Since then I haven't been constipated and it keeps happening. Pretty much this is the only time I will remember that I am a sick person. Can anyone explain why this is happening to me? My specialist thinks my system is strange because I have never had a problem with going to the bathroom ie. diarrhea

I saw my specialist today and he said that he wants me to go on Humira or have surgery. Surgery is the one thing I want to avoid.... I have read a bit about Humira and to be honest it freaks me out. I don't want it to make my condition worse to the point I will need surgery. I'm afraid it will give me psoriasis or other things you can get from it. Other than everything I have been on already, does anyone have any suggestions on other treatment or natural remedies to put me into remission?

This is all making me so depressed and stressed. I am afraid I will lose my job and if that happens I won't be able to pay rent or afford medical bills. I'm worried my boyfriend will one day get over being with a sick person and break up with me. I haven't spoken to my friends in ages because I just have all this stuff on my mind and I don't really have any family I can turn to.
Sorry to sound like a whiny b*tch but I just needed to let it all out to someone who may understand.

Thanks for the help and advice.

Smoothie

 

[Astra]

Hiya Smoothie and welcome

I'm not sure what's going on, someone else might know, but I do know from my own experience that vomiting was a red flag sign that I was blocked, and even tho you've had that checked, there still could be narrowing from built up scar tissue, every time you have inflammation it can cause narrowing which eventually obstructs.
I tried Humira for nearly a year but it wasn't working cos it couldn't penetrate the scar tissue, I am 5 weeks post op, I had a right hemicolectomy and all the scar tissue was cut out and binned!
Talk to your doc again and weigh up all the options, we also have a treatment forum and lots of success stories with Humira for you to read.
Good luck and vent to us wheneva you want, we all understand xxx

 

[malsykescarter]

Hiya Smoothie and welcome

I'm not sure what's going on, someone else might know, but I do know from my own experience that vomiting was a red flag sign that I was blocked, and even tho you've had that checked, there still could be narrowing from built up scar tissue, every time you have inflammation it can cause narrowing which eventually obstructs.
I tried Humira for nearly a year but it wasn't working cos it couldn't penetrate the scar tissue, I am 5 weeks post op, I had a right hemicolectomy and all the scar tissue was cut out and binned!
Talk to your doc again and weigh up all the options, we also have a treatment forum and lots of success stories with Humira for you to read.
Good luck and vent to us wheneva you want, we all understand xxx

My situation was very similar. I failed Humira and later had an ileocolic bowel resection because the scarring was too bad for me to have a chance at feeling well again without surgery.

Astra, I suggest you talk to your doctor very seriously about these two options. Luckily, Remicade works for me now. However, surgery isn't as bad as you think. When my doctor first suggested it, I cried for weeks because it was the one thing I was hoping to avoid. Now, I know it was the best decision I could have ever made!

I hope you find relief very soon!

 

[Smoothie]

Thanks so much for the reply guys.
So my specialist has pretty much given me 2 weeks until he wants me to start on Humira so within the next 2 weeks I have decided to put myself on a really hardcore anti-inflammatory and juice diet whilst having daily Reiki sessions to try and heal myself naturally. I hate the thought of this man made medication going into my body and working to try and reduce my immune system and leaving me prone to other diseases. Waaah!
Do you know if vegetables and fruit/nuts actually make the disease worse or does it just make it hurt more because that type of food irritates the ulcers but has no affect to the disease itself?

Do you also find that you don't get much pain but sometimes you'll throw up?

How did you deal with having a stoma?

How do you deal with the stress?

I have always been really into Yoga and meditation so since I was diagnosed I have increased my dosage of both each day. I really want to be a yoga instructor one day so I don't mind doing this.

I know there is no answer to the cause of Crohn's but I can't help but blame myself. When I was younger I used to abuse alcohol and drugs so bad. I started at such a young age. I was only 12 when I started binge drinking and 13 when I started doing drugs. I came to my senses and started to settle down when I was about 20 and started to live a healthier life but I feel like those days have now caught up on me and I feel so much regret and sadness.

Do you end up getting better at dealing with this disease or does it always make you sad?

Has anyone else been through this before where you blame yourself?

Thanks for reading everyone. It's such a relief to know I'm not alone and I have people to turn to. Wish you guys were all pyhsically around me though

 

[malsykescarter]

The vegetables, fruits, nuts,and other rough foods don't actually make the disease worse. What happens is that our bodies can't process them well when we are inflamed and they tend to only worsen the inflammation and pain. When that happens, you have the possibility of creating (or creating more) scar tissue that can only be repaired by surgery. You truly have to listen to your body and eat what works for you.

I'm all for natural solutions when possible, but given that our disease is autoimmune... I feel that many people only continue to get more sick while trying to avoid medicine and surgery.

Do you know that the surgery would require you to have a stoma? Not all surgery ends that way.

I applaud you for going the extra mile for your health and staying mentally well. But the only advice I have for you is to not rule out medicine. The reason we are sick is because our bodies are already out of whack... so we can't just "tough it out" like some of our perfectly healthy friends.