25 In depression and a newbie to the disease

[Tacykakes]

Hello all,
I still need to read all your stories but I really wanted to get my story off my chest.

About 17 months ago I was hit with a round of colitis while I was on vacation across the country and running around lake George. I felt extremely sick and called my mother and told her she needed to find me and take me back to the hotel. I got in the hotel and as we all know with a round of colitis I was shocked, embarrassed and surprised as my toilet filled with blood and my typical constipation-like self could not stop going. I completely quit wanting to eat and hid it from her as long as I could but my smile disappeared and she knew I was sick. We wrote it off as a flu and irritation. I didn't eat much for another month and went to my favorite place..the fair and a total repeat occurred. My boyfriend and soulmate drove me to the hospital and I began my "you have/had colitis and we don't know whats wrong with you journey." After a month of being sick and dealing with a GI who refused to tell me I was going through anything more than IBS I went to another doctor of whom I liked especially when he put me through the ringer of tests found the crohns and put me on what I thought then was way too many meds.

Since then I have been slowly getting worse. First my stomach gave out and I learned it doesn't even empty more than 20% of the food it should. I then went through incredible spasms in where I assume is my small bowel. I have had 6 colonoscopies, 2 endoscopies, numerous CT scans and MRI scans with no real evidence of the disease but much pain and of course a year of diarrhea. I have lost about 60 lbs and recently had new pain in my right side that I was worried was my appendix and then spent 10 days in a hospital which got barium stuck in my bowel for 3DAYS!!!! They found inflammation in several loops of my small bowel but insisted on checking my colon. I was so backed up with barium they never did a small bowel series. My doctor totally bailed out on me in the hospital and left me there. I was released to go to him to get a camera capsule of which I have waited a week and a half to hear back from. I'm living on percoset to help with the pain and I'm sure I'm taking too many meds I don't need. I have never been offered any other treatments most other crohnsies get. I have looked into getting another doctor at Jefferson Hospital since I live near Philly...but I have to wait until February to get in . I need a little TLC from people who understand I'm tired of missing work, spending the holiday season avoiding parties, and ruining my families holidays. I take so many meds for depression and nothing even comes close to helping me feel any better about this. I feel hopeless and on the runaround and that I will never EVER get better.

I know I've been sick for years and really sick for about a year and with the constant decline I feel like I'm not getting even close to the right medical attention. Please HELP!

 

[MADiMarc]

Jeff is a great place. I am originally from that area.
I know it seems as if you will never get better. I have been where you are right now. If I am reading you correctly, you feel as if you are leaning too much on your family, and all you do is gripe. Hon, you are sick. You are in pain. Besides, you are not as grumpy as you think and the people that love us are more than willing to help.
I am not a doctor but I can tell you that the pain meds just really mess with my Crohn's. They block me up and then I feel like a little tiny Edward scissor hands is in there causing more pain. Is there no other GI in your area? I wish I could give you a sure fire cure but all I can offer is an ear. When you are feeling down, mad, sad, bleh...come here and vent. Some of the nicest people in the world frequent this site and believe me when I tell you that they have helped me through some major depression and some just needing to vent things too.
:hang:
Michele

 

[crazycanuck]

Hey there thats an awful long time to go through something like that. I understand the frustration with docs although not to your degree Im sure but keep going keep trying and whatever youdo dont give up until you get some kind of answers. Best of luck and welcome here. There are a ton of great people here and Im sure youll find a ton of support here.

 

[woops!]

It sounds like you are having a horrible time. One thing that makes it worse is when you don't have a Dr who will listen to you. If you can change and find a good one go for it. I think most of us on here would agree that having a good doc, means alot. It is sad that you have to fight so hard to get one, but sometimes the only person who can make changes for you is you. If you are not happy with your doc, I would change.. that just my 2c worth. Good luck

 

[Tacykakes]

Thank you all!
You are right my doctor does NOT listen to a thing. In fact I had my camera capsule study the Friday before last before I left I asked when I would hear back and he said geez Tac, if youdont hear from my by...next Friday give the office a call.

I called Friday and Monday and he had a nasty secretary return my calls who pretty much chewed me out for calling so often. I understand he has other patients but.....

You know!

You are all right and I am active in finding another doc. I have an appointment scheduled in February and have been calling to move that up. Have some more names I need to check out...its just so tiresome!
Thanks for the support

 

[Jeeknee25]

Hi! I've suffered w/ Crohn's & colitis for over 22 yrs. I've been on everything, 6mp, steroids, azathioprine, flagyl, asacol, Librax Remicade, (I'm allergic to it), Humira, growth hormone shots...but nothing except for the steroids help. I was hospitalized for 7 months solid, & when I finally went home, I was in & out of the hospital every 4 weeks for 3 yrs afterward. I had 3 resections, most of my colon removed and had to have an ileostomy bag for 2 yrs. I was told by doctors, at Cleveland clinic, that i should be in a "BOX" and there is nothing more they can do for me. I also took Percocet for pain, however this can back you up. You have to find something to alleviate that side-effect. I found a medication, called AMP-Floracel. It's all natural aloe, in it's strongest most potent form. I started to use it & have improved a great deal. I'm not a doctor, however this is one of the medications that I feel I felt a difference. I've spent so much money and time on other products and never felt any type of relief. Another product that i found helps is Coconut oil. You can cook with it, drink cocnut milk/water. It's great for the kidneys, liver, and coats the intestines to help digestion.
Be sure to get lots of rest & drink lots of water. Stay away from carbonation, nuts, and fiber! The roughage can cause more cramping b/c it's difficult for the body to digest.
And the thing i know is the worst is STRESS. You have to learn to let things roll off your shoulde, (I know that's difficult), but talking to someone who can help you learn to handle stress can be priceless. It helps everything else start to fall in place.
this takes patience, time, and will to never give in. Trust me, I feel your frustration and sadness.
Good luck!

 

[xixo]

hey!
yes you need to find a better doctor!! maybe if you try to talk with other patients and find out what they think about their docs it will help you choose a better one..

i hope you find one because it will help you feeling a lot better trust me!

good luck!! :hug:

 

[Tacykakes]

Wow Jeeknee I am SO SORRY for everything you went through. I am all about the all-natural stuff and you know I LOVE coconut oil and water (I basically live off the water to stay hydrated and energized) I'll need to try the Floracel--how do you take it and where can I find it???

I appreciate your support and GRR to the doctors that told you to live in a box. People can be so insensitive especially when they dont have to deal with the disease.

I'm actually in the process of trying a different career path as my time as a bakery manager is causing much unneeded stress especially this time of the year. I'm exhausted in every way and I have no choice but to sleep away this joyous season. Since you are a homeopathic user like me if you have any other suggestions for food/drink/stress relief and anything else..I'd love ya for it!

xixo--I actually found something better a coworker of mine who is amazing actually knows one of the CEOS of bluecross and he is doing the legwork to find the best my insurance can buy and trying to get me in sooner.

 

[Jeeknee25]

No need to be sorry. Its yhe way i guess my life was supposed to happen. I just hope i can help others. I wish i had someone to talk with qho could relate to what we go through. So, the medicine, It's called AMP- Floracel. Just google it. The directions are on the website as well as the bottle & it changes with each case. It comes from fort lauderdale & if you say you were referred by me you'll get a discount (it's a referral) and I don't know them personally. I do know that when you read about it online, you'll be amazed at the research and pictures of people who use AMP- Floracel before & afters of the intestine. It will leave you scratching your head.
I sadly lost hope in our medical treatments bc truthfully, I think they aren't trying to cute anything. Pharmaceuticals are a business so they want your money. They keep you dependent on medications rather than curing it bc they'd lose money. That's why I try the natural approach, and for the most part, it's more successful for me.
The stress, that's something you really have to make a conscious effort to put your well- being before EVERYTHING else. It sounds selfish but if you aren't well, you aren't yourself.
Try breathing deeply a few times a day and just re-center.
I believe you'll be fine but if you have questions or want more info, I'd be happy to help!

 

[mrjoe]

sorry to hear a story like that... You REALLY need to find another Dr. tho.. That person is an idiot and shouldn't be practicing medicine.. where are you in Pa?? I'm pretty sure Upenn has some good dr's....Hang in there..

/joe

 

[Tacykakes]

Joe, I'm right near Philly out in the Burbs but not Main Line haha and you are the THIRD person to say that. Luckily I have a coworker with a friend who works for Blue Cross (my insurance provider as well) and he is scoping out whether Jeff or Upenn is better and you are right...he is an idiot!