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My History of Crohn's Disease

My life journey took a wayward step in the wrong direction when, reaching the ripe old age of 18 I suddenly started to experience severe stomach pains. It felt like food poisoning. After a dreadful night of vomiting my mother called a doctor (they used to do house visits in those days, it was a part of just about every doctors daily regime). After examining me the doctor called for an ambulance and I was whisked off to hospital.

That was the beginning of my experience with Crohn's Disease, which was initially diagnosed as 'Acute Enteritis' and was not diagnosed as Crohn's Disease until 12 years later.

I underwent emergency surgery under the hand of a surgeon by the name of Cox who removed 6 inches of the large intestine, the appendix and 6 inches of the small intestine -

After recovery, I returned home to a normal life, and then, 12 years later I started to experience serious stomach pains again. :thumbdown:

I attended the emergency department of PANCH hospital and was (after a review of my medical history) admitted as an inpatient. After treating me with intraveneous neocortisone, my condition was not improving and it was decided that I needed surgery once again. Cox had retired and a renowned surgeon, a great man by the name of Mr. Gordon Trinca performed the surgery, and removed another 12 inches of the infected bowel. Post Op Mr. Trinca was extremely please with the way the surgery had gone and said that he wouldn't like to have to go back in there again since, due to adhesions from the previous surgery, my bowel tract was a mess and difficult to diffentiate one part from another.

:poo: From that time things were never the same. Directly after the surgery, I started to be visited with acute diarrhea. One the observations that I made during this time in hostpital was to be a discovery that allowed me to continue leading an (almost) normal lifestyle.

Initially after surgery, I was administered with Morphine for pain. This is only given to a patient for a limited time as the situation requires, and then the patient is placed onto a safer pain medication such as Panadiene, as was the case with me. After a few days on Panadiene, I noticed that the diarrhea went away completely. But as soon as I returned home and was no longer on Panadiene, the diarrhea returned. A light bulb went on over my head.. Eureka, I already knew that some pain medications (especially those containing Codeine Phosphate) can cause constipation in some people, and hence, in my case relieved the diarrhea.

Note: I am not suggesting that anyone else use this medication as a means of relieving diarrhea. Some people cannot take Codiene Phosphate as they are allergic to it, and there are serious side effects and complications that prolonged use of the medication may cause. In my case, I have used, and am still using Codiene Phosphate to control my diarrhea. I have been extremely lucky that to date there are no noticable side effects even after so many years. This may not, and probably WOULD not, be the case for others.

Over the years I have suffered further attacks of stomach pains, and been admitted as an inpatient times to numerous to mention. However, no more surgery (up to this time) has been required. The symptoms have been relieved each time by a course of Neo-cortisone administered intraveneously. After a number of years I had to take 10mg Prednisolone daily to stave off bowel obstruction, and that continued for 14 years.

That has been the case up until 2 - 3 years ago. However, due to the need for hospitalization 3 times for bowel obstructions in 2009 - 2010, I am under the care of (to me) a new Gastroenterologist, and he has been successful in getting me onto the Remicade/Infiximab program where I spend 1 day every 2 months at a clinic which carries out an Infiximab infusion. I have been treated with this medication now for about 18 months.

For the first year all was well, the diarrhea was diminishing, and I was able to cut down on the Codiene Phosphate, and better still completely stop taking Prednisolone. However, in the last 6 months, I have once again started to suffer from extremely painful stomach cramps and contractions more and more often, to the point where, now, I am suffering them every day and night.

Note that these pains, though similar to a bowel obstruction are not associated with a stoppage of the bowel. This then is my current situation. It has prompted me to investigate the side effects of Remicade - which include stomach pains as a side effect - and to further become more familiar with the latest information on Crohn's Disease.
 
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Angrybird

Moderator
Location
Hertfordshire
Hello and :welcome: Sounds like you have ran through the whole gamut of the wonders that crohns brings to our lives. Have a look at our treatment forum as this will have lots of info about Remicade and other meds. It could be that it has ran it's course for you and an alternative med may be required. Have you been in contact with yor GI/IBD nurse about the symptoms you are now having? If so what have they said?
 

Jessi

Moderator
Hello tdunn, and welcome to the forum.

I see that you've been through the wringer.

I'm on Remicade, also. I got the stomach pains for the first few infusions, but they have gone away completely. I hope they go away for you, too... and soon. I hate to hear of people being in pain. :hug:

As Angrybird mentioned, we do have a sub-forum for Remi users that you may want to have a look at. By all means, join the club there. :D

Just a thought ~ Could it be that your new pains are associated with the cutting down of the amounts of codeine? Perhaps your body is so dependent on the pain meds?

Anyway, I really hope you can figure things out soon and get back to feeling well. :)
 

mikeyarmo

Co-Founder
Welcome to the forum tdunn7!

You certainly have had more than your fair share of experiences with Crohn's Disease. I hope this forum is helpful for you in your search to learn more about Crohn's Disease.

The forum Angrybird and Jessi mentioned is likely a good place for you to start. Feel free to post any questions you do have and I recommend using the Search feature of the forum to look up information that is already posted on the forum.
 

xJillx

Your Story Forum Monitor
Hi tdunn7 and welcome to the forum! Boy, you have certainly been through a lot! And I am so sorry to hear Remicade is just not cutting it anymore. Unfortunately, it's not uncommon for this to happen, as the body can build up antibodies against the drug. Have you and your doctor discussed increasing the dose and/or the time between doses?

I sure hope you can figure out a way to get things back under control soon.
 
Thank you all. My gastroenterologist has been away on holidays. I have an appointment with him next wednesday. I guest we'll be discussing alternatives, and I'm hoping that the time has not come for some more cut and stitch.

I don't think the problem is associated with the codeine. From time to time due to bodily changes I have had to cut down, or take more or even stop for awhile and have never had any problems.

Thank you all once again for the welcome.
 
You may want to look into Humira as an alternative.
Remicade did not work well for me so I changed to Humira after 6 injections.

Best Wishes!
 
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