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I use to love roller coasters......

But this roller coaster ride that is Crohns has been, well, at best, interesting.

I was diagnosed six years ago, less than one year after getting married. I had a new home, a new job, a new husband, and a new disease that would affect my life more than anything I ever thought possible. I had been working very successfully for the U.S. government as an attorney in Texas, but I transferred to the Atlanta office to be closer to my parents. My diagnosis came after accepting the transfer, but two months prior to moving.

When I arrived in Atlanta, my Crohns was in full flare. I was miserable. I went to work every day, but I hobbled down the halls and suffered through much of it. I had to lay down in my office frequently due to the severe pain. I have a strong work ethic, but had to ask my supervisor if I could work part time. I just couldn't do it any more. He said no. I continued to work every day in agony. I was seeing a doc at the time who had me on Pentassa and Asacol, which were doing no good. My coworkers began thinking of me as lazy. I tried to explain about the Crohns, but they just could not understand. They did not know me before the Crohns. I went through that for over two years. In terrible pain and being disrespected by my coworkers, even though I missed less than 4 days of work due to the disease in two years. I hated hated hated it, but I had to have insurance, and my husband's company did not provide insurance at the time. I was a slave to the job.

I got pregnant in May of 2005. I was feeling okay, but not in remission. Still working in my miserable job. In August, I miscarried my little girl. It was devastating. Don't know if the miscarriage was Crohns related or not. It is amazing how much docs don't know about our bodies.

Right after the miscarriage I decided to try a new probiotic called Digestive Advantage for Crohns and Colitis, made my Ganeden Biotech. I had to do something. My life was falling apart. Within a week, I felt amazing. Within three weeks, all Crohn's symptoms were gone. This little probiotic put me into remission for three years. I got pregnant in May of 2006, had a fabulous pregnancy where I felt great the whole time, and gave birth to a gorgeous little girl in January of 2007. My husband's company began providing family insurance, and I quit my job. I had too many bad memories, and yes, by that time, a terrible attitude toward it.

Over a year ago, my symptoms started coming back. At first, they would just occur once a month or so, then they started getting more frequent. Severe pain. That has always been my problem. Pain like being in labor. Makes it hard to walk. In the last few weeks I have had some added stress, and the Crohns has flared horribly. I was not sleeping at night due to the pain. Every 3-4 minutes the cramps would seize me.

I would get up in the morning, put something on tv for my little girl, then try to rest on the couch. All day. It was painful to get up. I could barely get up to make her lunch. I felt like a horrible mother, but I was in too much pain to do much else.

My tummy has been so distended that I have not been able to wear anything without a soft waist. I wear empire dresses all the time because they put no pressure on my abdomen. I look like I am at least five months pregnant. I have been asked at least six times in the last several weeks if I were pregnant. In fact, a lady at the doctor's office this week congratulated me. That is tough for someone who works so hard to maintain a nice figure.

I have recently had a colonoscopy, endoscopy, and MRI. The doc just put me on prednisone and wants me to start Remicade next week. I hate this because I feel so strongly about natural medicines. The probiotics worked so well for so long, then just seemed to stop working. I tried turmeric, fish oil, and ginger. I went on a low carb diet and ate lots of blueberries, raspberries, and other anti-inflammatory foods. Nothing seemed to help. I was forced back to the doctors. I feel there must be a natural concoction that will work for me, but I haven't found it yet.

I am absolutely furious that I cannot legally take medical marijuana. I live in Georgia and this state is backward in so many ways. I have never tried it, but I have read wonderful things about it. I can't risk doing something illegal, but it is hard to believe that our laws withhold something so natural that has such strong healing powers while they allow these horrible man-made drugs that lead to higher risks of cancer and death.

I took the prednisone last night and I feel great this morning. For the first time in months, I don't look like I am pregnant. My belly is back to being nice and flat. I feel like I have lost 15 pounds.

So that is my story. It has been an emotional and physical rollercoaster. But I am taking my daughter to Disney World this Christmas. And I plan to be in excellent physical condition to enjoy the rollercoasters with her.
 

DustyKat

Super Moderator
Hi again YogaGirl, :bigwave:

You have certainly been through a lot over the past few years and I'm sorry to hear about your miscarriage. I understand about your loathing of conventional medicine but unfortunately I personally don't think you will regain remission without the use of them. There are people on here that have and are managing to keep their IBD in check with natural therapies but depending on the severity of the disease if they flare they most likely will have to resort back to the conventional drugs. I have no issue with either form of treatment but please bear in mind that both conventional and natural treatments come with their own mix of side effects.

It's good to hear the Pred is working for you and I hope you find a regime to maintain remission. This is a safe and friendly place with loads of support and info.

Welcome aboard!

Take care, :)
Dusty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi YG, I agree with Dusty!! Conventional meds can be scary but remember they will keep an eye on your bloods when you start any new treatments. EJ has been on 6mp since early this year with only positive results all around. BTW, he loves roller coasters too!!!
Good luck!!
 
Hi YogaGirl,

My heart goes out to you as I've been there myself since the age of 12. I agree with Dexky. The doctors will monitor your bloodwork closely if they put you on any maintenance medication to get the crohn's in remission. My GI does that with me as well to make sure things are working properly.

Hang in there. ((hugs)) Gutless Wonderwoman
 

rygon

Moderator
Sorry for not reading every post but I like rollercoasters too, not sure where you come from but pepsi max in blackpool is pretty cool, so is oblivion at alton towers. What did you used to like?? how come you dont go on them anymore? (dont say youre too scared lol) x
 
Thanks for all of your replies. It is so nice to have this support group. I have already learned so much and feel so welcome in the short time I have been here. I look forward to getting to know all of you better.

Rygon, I am in the U.S. and have been on many of the best rollercoasters here. I'd love to go to Alton Towers but have never been to the UK. Apollo's Chariot at Busch Gardens in Williamsburg is probably my favorite. Unfortunately, as I get older, I tend to come off of them stiffly, holding my neck and complaining about the jerkiness. Hah! I am only 36 and already feeling the signs of old age!:p

Now that I have a little girl, I tend to go on the Merry Go Round and the Disney Dark rides. Life sure changes with a little one.
 

Entchen

Chief Dandelion Picker
Hi, YogaGirl, and welcome to the forum. Thanks for sharing your story - I read it with interest. I had the kind of pain that makes it hard to walk this week for the first time ( Pred dose boosted to 50 mg this morning). I couldn't imagine going to work feeling like that - you were a star to make it through being so sick and being in a toxic environment for all that time.
 
So that is my story. It has been an emotional and physical rollercoaster. But I am taking my daughter to Disney World this Christmas. And I plan to be in excellent physical condition to enjoy the rollercoasters with her.

i really liked that =]

i wish nothing more for you than that plan to go through! but if it doesnt, dont blame yourself hon. from your post i get the feeling that you are really really hard and judgemental of yourself, and i feel for you on that. i think i dont treat myself well either....but point is that its NOT your fault if all you can do is make your little one lunch, its not your fault if you cannot work, its not your fault if a vacation does not go as planned.
and i know that someone just saying this to you will not take those feelings of guilt away, and that sucks, but i guess sometimes try to judge yourself from someone ELSES shoes. if you were not you and had to reply to your post what would you say? what would you think of this woman? i doubt youd think that shes a terrible mom who cant get her life together right?
thats what i try to do when i realize that im making judgments about myself that i would NEVER make about someone else in my position. strange how we do that......

anyways that was really rambly but idk i just felt the need to say something to you.....planning to feel well in time for this or that, it is a double edged sword. PLAN girl, i mean plan away that means that you are fighting and striving for better and that is the name of the game. but *if* it doesnt happen, a place where we have all been unfortuantely =/ you can take yourself down that path of failure and thats no good either. you dont deserve to make yourself feel like youve failed. its hard, but just idk, keep in mind i guess.

anyways i feel like this is sort of a downer hah so sorry, but really welcome to cf and ive already seen you posting quite a bit yay =]

take care chickie
 

Astra

Moderator
Hi Yogagirl
and welcome

so sorry to read about what you went thro but happy to hear about your little girl, and oh, you're not a bad mother for lying on the couch all day, you're ill with a very debilitating disease!
As time goes on with my disease, I've come to the conclusion that with the best will in the world, no amount of probiotics, natural stuff or diets will get rid of inflammation, yes they work to combat diarrhea and constipation, but meds are the only stuff to combat inflamm, so good luck with the Pred, it works wonders to blitz inflamm, and let us know how you're getting on
lotsa luv
Joan xxx
 
Thanks for asking, Dexky.

After my visit with the doc yesterday, he is going to prescribe the LDN for me. However, he is concerned that it will not be strong enough for me. He said the radiologist called him right after my MRI and was very concerned because my case looked so severe. He asked my doctor whether I was even able to get around. I have been in a lot of pain lately, but the prednisone helps so much.

He lowered my prednisone dosage (I went from 40mg to 20mg) and I still have some pain on that low of a dose. I am starting a new job tomorrow, so I really can't afford to be in pain. That makes me wonder whether I just need to go ahead and try Remicade or Humira since my terminal ileum seems to be so seriously swollen (I love that alliteration!).

The doc was going to consult with his partners and determine whether he is going to recommend Remicade by the end of this week. He was very honest with me. He told me that on the one hand, my case is very serious and he is concerned that I need a very strong medicine to fix it. He wants to preserve as much of my intestine as possible and is afraid that without strong medication, I may end up in surgery. On the other hand, he has concerns about putting me on such a strong "lifetime" medication. I really appreciate that he admits that he does not have all the answers.

So, long story short, I have not decided yet. But I think I will probably follow my doc's advice.
 
Hi YogaGirl! :)

I really empathize with what you've gone through. You sound a lot like me when it comes to work ethic. I probably would have done the same thing if I had still been working when my health started declining. I was a slave to my work before my diagnosis, so I can't imagine having to deal with pain on top of that! I was also like you with the belly distention. I thought I was just getting fat! Any pressure on my belly was so uncomfortable. I'd have to immediately unbutton my pants after eating. I ended up having an abscess I didn't know about.

I understand wanting to be on natural remedies. I would do that too, if it were possible. But I agree with others that natural remedies alone will not keep me in remission. Even some of the amazing stories I've heard of people using natural remedies end up losing effectiveness after a while. I don't mean to discourage you though as it is your personal choice. Side effects sound scary for conventional medicines, but they do work wonders! And they give you back your life! I had no idea how much the pain affected me on a daily basis until I found the right medicine combination. I'm sure your daughter would love it if her mom had her energy back too! :)

Anyway...just wanted to welcome you to the forum and thank you for sharing your story with us! There are some great threads called Remicade Club and Humira Club. Depending on which medication you might end up taking, there's a great group of people in each thread that share their experiences and can offer you support if you decide to try one of these medications. Good luck! :)
 
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