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New to Boards: Sharing my story for the first time

Hello everyone! I am new to the boards but unfortunately not new to Crohn's. This is very cathartic for me considering the fact that I have never shared any detail of my story to anyone outside of my family and some of the women that I have dated :hug:. I felt like I was living on an island all of these years. Recently, I had a flare up and for the first time I met another person with Crohn's at the hospital. Like me he was a mid 30's, African-American, male. I guess that meeting has given me the courage to do research and share my story.

Now to the back story...

I was in the 5th grade when I remember lying on the floor, writhing in stomach pain after dinner. My family was in shock and honestly wasn't really sure what to make of it. About a week later it happened again. My mother took me to my pediatrician where he informed us that most kids my age tend to act out when another baby is introduced to the household. I will never get over that honestly. For weeks I endured my parents and other family members thoughts and comments in regards to my apparent "jealousy" of my younger sibling. Amazing, right? Well, I can't fault them too much because if the respected pediatrician of my city says so who are they to question.

Some months later I had another flare up. This time it happened at school after lunch. I was lying on the floor at school in shear pain. My parents took me to the emergency room and a couple of days later I had my first appointment with a GI doctor. I received a colonoscopy and was diagnosed with Crohn's.

The next 10 years of my life was Prednisone, pain, disappointment, multiple ER visits, burning joints, etc. In regards to prednisone, I would take as low as 5mg a day and as high as 40mg a day....

As I was nearing graduation for my undergrad studies, I had another flare up. This time it was much more severe than the others. I recall going to the emergency room and while sitting in the reception area I vomited. I was able to make it to the rest room where I vomited again twice. I was in so much pain that I could not stand vertically. I remember attempting to stand, bracing myself with the sink. I remember the pain residing some so I began to flush my mouth out with water as well as splashing some on my face to cool down. I thought to myself that the worse was over and I just needed to vomit. I am a brown-skinned, African-American man. I looked in the mirror and my lips were blue. My face had lost color. Lol, I looked liked one of the zombies on Michael Jackson's "Thriller" video. <------Its OK to laugh, I'm actually laughing now. I remember saying to myself "Oh sh....". I fell out and I woke up approx 36 hours later.

When I woke up the doctor's advised me that they wanted to try to see if they could get everything under control without food intake and medication. I think I was allowed to have ice chips. They stated to me very clearly that if I did not improve by the deadline (3 days) I would have to undergo surgery. The deadline passed and of course I underwent surgery. I received a bowel resection and an appendectomy. I believe they removed about 10" of my lower intestine.

The surgery went well and I healed ahead of schedule. I remember the on-going physician at the time giving me a pill post surgery. Sadly I can not remember the name of the pill or how long I took it. I do remember that it was new at the time. He stated that is was beneficial for stopping the Crohn's from spreading at the point where my colon was reconnected. I will have to do some research and update this thread at a later time. That was the last pill that I took in regards to Crohn's. If anyone has an idea of what it couldve been please let me know. Again the year was 2001.

THE GOOD: From November 2001 to August 2013 I was symptom free! No meds. No special diet. I lived an active life and even started to do minor body building. Life was good and I assume I was trying to make up for all of the years that I felt had been taking away. I tried and successfully pushed every thought, memory, and association to the word Crohn's out of my life. To this day, I think that way of thinking will be ultimately my demise.

Recently I had breakfast and my old friend decided to pay me a visit. The next thing I know, I was on the floor writhing in pain. Its like I was in the 5th grade again. The scary part about it all is the pain is 1000x more sever than before. I went to the ER where they gave me pain and anti-inflammatory meds. Since I have had another flare up this time not as severe.

I am honest with myself that my Crohn's is back. I am afraid that all of those years that I spent pushing Crohn's out of my life are years that I should have been seeing a doctor on a regular basis. Possibly even taking some sort of preventive medication.

Now, I'm in a new city (Atlanta). My memory is sketchy at best in regards to detailed treatment history. I don't know what the new treatments are. I don't know who is/are the best "Crohn's" doctors. All that to say is a need help. I'm glad I found this board and I will spend a great deal of time reading and discussing.

In the mean time someone please help me find a great doctor in the Atlanta metro area.

Sorry for the long post and thanks for reading.
 

valleysangel92

Moderator
Staff member
Hello, welcome to the forum, thankyou for sharing your story with us.

Im sorry you've had to deal with so much, but I'm very glad you've found us, there are many members here with lots of hints, tips, advice and support to offer you.

Just a few questions to help us help you .. What are your symptoms like at the moment? Is the pain the only symptom or are there others? What anti-inflammatory meds did the ER give you? When was the last time you had a colonoscopy or saw a GI? Im sorry to ask but the more we know the more advice we can give.

Have you ever experimented with diet? Some people find that they can tolerate some foods more than others. You could find it helpful to keep a food diary, so that you can see any relationship between what you eat and the severity of your symptoms. Also, if fruit and veg are a problem, you could try juicing them, a lot of people find this helpful because it breaks down the fiber making it easier to digest.

Here is a link to some information about the new treatments - http://www.crohnsandcolitis.org.uk/information-and-support/information-about-ibd/tests-and-treatments-for-ibd and this forum also has a treatment section -
http://www.crohnsforum.com/forumdisplay.php?f=16


For help finding a good doctor in your area, there is a doctor review section built up by members containing locations of doctors and their experiences with them - http://www.crohnsforum.com/forumdisplay.php?f=79

I hope this helps you a little
 
Hey and thanks for the response!

Im not sure what the hospital gave me but it was a one-time ordeal. They did not give me a prescription.

In regards to symptoms of my most recent flare ups; extreme cramping, burning feeling/pain in my left hip/pelvic area, diarrhea, and burning sensation when during bowel movement. After the cramping goes away I am typically able to have a bowel movement (regular or diarrhea).

In regards to diet- Post surgery (2001) I pretty much eat whatever I like. However, I think I'm still mentally trained to avoid certain foods that caused flare ups pre-surgery. I avoid really hot foods and steaks. Honestly from time to time I have eaten hot wings and steak. Usually what happens is I will have a bowel movement a little earlier than normal.

I was a collegiate track and field athlete through out high school and college so I have always been in pretty good shape. In my mid to late 20's I starting tinkering around with bodybuilding. So I have tried different diets in regards to helping m put on pounds. Recently I have started the vegan lifestyle. Not because of the flare ups but to lower my overall body fat.

At the moment I still have the persistent pain in my hip area. I did notice that the hip pain became more severe during the flare ups. Im starting to think that I have a leaky gut or something and maybe other areas are getting infected. I have to do more research on fistula. In my recent research I have been hearing a lot about this and I am wondering if I have one now?!?
 

valleysangel92

Moderator
Staff member
Okay, well if things get that bad again, don't be shy of going back, I'm pretty surprised they didn't give you any testing while you were there or at least a prescription to take home.

Heat can be helpful for cramping pain, so maybe a hot bath or heat packs.

As long as what you're eating isn't affecting your disease, there is no reason to change it unless for other health reasons such as weight loss. Be careful not to cut too much out of your diet, if your eating a vegan diet you may loose protein and iron so be careful of this.

I can relate to the pain, I get pain in my right hip area that is sometimes hard to distinguish between hip or intestinal pain. While it is good to research, remember that its not always as bad as it seems. The symptoms you have in your hip sound similar to mine and Ive never had a fistula. Here is a link to a sub-forum for fistulas, you might want to post there and see if anyone had a fistula with your symptoms http://www.crohnsforum.com/forumdisplay.php?f=76 . It is also fairly common for crohns sufferers to have joint pain during flare ups, so mention this to your doctor when you get one.
 
What are people doing in regards to managing the hip pain? OTC pain relief does nothing for me. Unfortunately my tolerance is too high from hospital stay post surgery. I swear they gave me every pain med imaginable.

As far as the diet goes I guess I wont be your typical vegan because I will be using GNC supplements with protein, amino acids, etc.
 

valleysangel92

Moderator
Staff member
Well I find heat packs are useful, you can get pads that stick to the skin under your clothes, and give out sustained, gentle heat over 8-12 hours, or a heated cream like deap heat cream. I have been told by a GP that you can use gels with Ibprophen in them as its a topical cream which doesnt go into the digestive system, but this is something I would discuss with your own doctor and GI as I wasn't so sure about it.. It still goes into the blood stream so it could still cause side effects.

As well as heat, cold can have the same benefit, I get a lot of joint ache in my jaw and apply ice to it for short periods, so the same could be applied to any other joint.
When you see a GI, ask them for a referral to a rhumatologist to check for any arthritis, they can also give you some advice on pain management.

Its good that you are still going to take the supplements :).
 
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