"What is unsought will go undetected"

[carolinajak]

I use to be the healthy one in my group of friends. I rarely got sick. I ate a very low fat, whole food, intelligent diet. I was very active and focused on maintaining a healthy lifestyle.

Sept. 4th I began to have crippling abdominal pains. An ER visit, emergency surgery, 21 days in the hospital, several pieces missing from my insides, and a less than smooth recovery later I sit here typing to you.

My doctor told me I had the worst CD he had ever seen. I had at least 2 abscesses, diverticulitis (sp?), a fistula from my small to large intestine, and a perforation. All of this had descended, stopped any GI movement whatsoever, and was spilling poison into my body.

That’s the short of it. But I can say today that I am happy. I am only at the beginning of whatever further complications await me. But from what I have been through I know I can meet and overcome them. I know that no one will research or work harder than I at overcoming this illness. I almost relish the challenge of it.

I read a few hours a night while I am home bound recovering from surgery. As you can imagine I easily fall into Crohns related reading. And I have tons of questions and things I would like to discuss. I will not try to post them all here. But I will leave you with a couple:

1. I have read a lot about a couple treatments that claim high remission rates such as Low Carb Diets, Lactose Free Diets, and Eastern treatments using herbs and acupuncture. I do not doubt their success, but wanted to know if there were any successes of failures with these methods anyone could share? (If there is already a question/forum that relates please point me in the right direction.
   
2. Also, has anyone else been through the experience of having no or few symptoms or unnoticed symptoms until the extreme of having to go to the hospital and get emergency surgery?

I am glad to of found this forum. Thank you all for sharing and helping others.

 

[mikeyarmo]

Hello Jason and welcome to the forum! While it seems like things looked pretty bad at one point, I am very glad that things are much better now.

To answer your questions, I personally was on the Specific Carbohydrate Diet for a few weeks. This was during a time when I had not eaten much solid food in a couple months and had just learnt about the diet. It reduced the gas I had (which I had a lot of) for a few days, but then there was not much change. After a few weeks I got quite sick one day (throwing up) and had to go to the hospital. I think the problem in my case was I may not have folloed the SCD fully (even though I had tried to, it is very hard to do initially), I did not try it for a long enough time and since my case was already quite bad, the diet would probably have needed to take some time to work (or might not have worked at all). I believe the less severe your symptoms and disease is, the easier it would be to control with diet.

I can remember the exact day I experienced my first symptoms. This was at least two years before my official diagnosis, and about 3 before my surgery. So while symptoms just started suddenly, they were not as severe so soon as yours were. There are many people though who had no problems until one day they had to go to the Emergency room due to stomach pain. A lot of people in the ER are recommened to have their appendix taken out, which is where the Inflammatory Bowel Disease is first diagnosed.

Remember thought that people may have symptoms, but not think about them too much. People might not consider their first few cases of diarrhea or a wee bit of stomach pain to be a big deal, as it can happen to normal people depending on what they ate anyways.

I hope this helped and encourage you to continue asking any questions you have.

 

[Cara Fusinato]

Yes, Jason, I was one of those "worst ever seen" but had no symptoms whatsoever until one day, I ended in hospital. Since then, though, I have rejected the traditional treatments and have indeed found an alternative that works for me. Feel free to drop me a private message or view my thread about mangosteen juice or check out my blog on it at http://squawvalleymangosteen.blogspot.com. Since you wish to know, I have achieved nearly complete remission and feel great with almost no symptoms (unless I do really bad stuff to myself like a HUGE meal or such). If you wanna know about mangosteen, feel free to ask. And welcome to the community!

 

[skeet]

Aloha and welcome to the forum! I don't have Crohn's so I won't attempt to answer your questions on that. However, if you want an empathtic shoulder & some conversation about ruptured guts spilling into the abdominal cavity, and about living with a shortened bowel, I'm your gal!

Information & education are they keys to living with this stuff, so you're well on your way. The other thing you'll get here is the camaraderie of other folks who understand. Hope you'll be back often!

 

[Jeff D.]

Welcome to the forum. I take my medication and I do meditation. I pretty much eat healthy but some times I splurge and then I feel pains and stuff but for the most part I am feeling well. Just try to not let the disease take over your life. Glad you are doing better.

Good luck

 

[Starbelly]

Hello and welcome, and I hope you recover quickly. Yes, my experience with the disease is that I will be asymptomatic for months or years even, and then a massive flare. I was also just released from the hospital... just 11 days, not as bad as you, but the doctors always say it's the worst they have ever seen... that's why your in the hospital, not their office So far, as far as treatments go, I would say Remicade is the miracle drug. So far, it has saved me from a complete colectomy. I may have a different opinion on the dieting and holistic healing vs the pharmacutical and surgical options than most people. Nothing that I eat or don't eat bothers me specifically... it's great on one hand because I can eat whatever I want. Very important to me because I am a gym rat and exercise freak and eliminating things from my diet would make it very hard to maintain my caloric intake. But it is unfortunate on the other, because I can't control the flareups with a specific diet... believe me I have tried. I would just say to try things, and see what works for you. Just make sure your doctor knows what you are doing if you decide to take the holistic approach. I know a lot of people don't trust the pharmacutical companies (I don't either) but after 11 years of research everything that I have found on the holistic side is anecdotal. I have an entire library of books and dvd's and random info on the disease and nutrition. Most of the info is contradictory... not on purpose, but what ends up happening is that what works for one person may make someone else very sick. For instance, a friend of mine referred me to a doctor who used to practice Western Medicine, but now has changed to an Eastern philosophy. I tried her accupunture and immune boosting herbal suppliments. That was in April. I was admitted to the hospital on Oct 1 in the worst pain I have ever been in. I was literally praying to God to take me to heaven... kinda scary when you are a Christian and you are asking to die. I was losing so much blood, that I wasn't sure I was even going to live. But, a couple of Remicade infusions later, and I'm feeling pretty good now (just can't sleep because of the steroids... that's why I'm posting at 3:30 am) Anyway, I think you have the perfect attitude for getting better. Everything you just went through, and are going through will make you a better, stronger person. And when you regain your health, you will appreciate it more than anyone else.:thumright:

 

[Kev]

Hey carolinajak... Welcome to the forum... I was at work, thought I had the flu.. Now it's a couple of years (and some surguries) later.. Well, again, welcome to the club.. The only membership privilege I know of is you get an unlimited supply of 'bitch@IBD' I dunno about low carb... but going lactose free for me has been a real boon. I have not reached remission, but my progress this past year lactose free has been great Vs the prior year.. same diet and meds, but I hadn't cut out lactose.. Nobody told me to. As for herbs.. hmmm, again dunno. herbs can be deadly... nightshade, belladonna, etc.. I dunno about acupuncture.. but my chiropractor actually DX'd me BEFORE the best & brightest GI's.. Wish I'd listened..
I do know that I FEEL better after a session with my chiro.. dunno if thats placebo effect.. or if the stress of IBD collects within the body and chiropractic massage gets it out.. or what.. Anyway, these are the things that seem to be working for me

 

[Starbelly]

ya know, that's true Kev... I feel better after the Chiropractor too. Of course, mine is my best friend from childhood, so we talk alot about my condition. I have a mild kyphosis of the upper spine, and he believes that "leaky gut" is completely related to improper alignment. There are many studies linking IBD and spine problems if you search the net... it sparked my interest a few years ago, but just thought about it after reading your post. Thanks. I'm gonna go do more research.:thumright:

 

[Karen]

:welcome: ABOARD I am sure that you will have a great time and find this to be a VERY INFORMATIVE place to come ... so just make yourself right at home and have fun !!

 

[robert.k]

Remember thought that people may have symptoms, but not think about them too much. People might not consider their first few cases of diarrhea or a wee bit of stomach pain to be a big deal, as it can happen to normal people depending on what they ate anyways.

This is what happened to me, I didn't go for help for probably two months after the first warning signs that something was terribly wrong. I just thought it would go away. For two months my diarrhea got worse and worse, I was going more and more frequenty more and more urgently, and I kept seeing more and more blood. It was horrible. So at that point, I went for help.