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Just diagnoses

I am a 54 year old male and have had stomach problems my whole life. The past few years it was mostly gas cramping, daily diarrhea and pain. I take pretty good care of myself, and was fine living with these symptoms for the rest of my life. I had two previous colonoscopies. The first one about 15 years ago showed hemorroids and the one I had about 5 years ago was clean even though I had all those symptoms. Like I said, I was prepared to live like this, that was until a few months ago when out of nowhere I had a pain in my stomach that I never had before. it was more like contractions. They would come and go. then my stomach started to blow up. i fought it as long as I could but by the time I felt like I had swallowed a basketball I had to drive myself to the emergency room. They did a CT scan on me and I had a blockage. I never had this before. They had planned to admit me, but the blockage cleared while I was there so they let me go home. I live in kind of a small town and made an appointment with a gastroenterologist. It would take two months before I could get in to see her.

In the meantime, i started experimenting. I went gluten free. After a month or so, my diarrhea which occured several times a day, went down to about maybe once a week at the most. I still had some pain and cramping but be cutting out the gluten i was able to solve one problem on my own. Finally I got into see the gastro doctor who scheduled me for a colonoscopy. I expected it to be clean like my last one but it was not. She said I had crohns and hemorrhoids. I was kind of happy to have some diagnosis but knew she was going to put me on some type of drugs. I do not like taking any medications. She prescribed pentasa which when I went to pick up was $900 so I did not take it. Then she prescribed Delzicol which was $400 for the month. I was not happy about that but I figured I would try it for a month. I am currently a few weeks into it. I have not noticed any changes. i was already feeling better by changing my diet. I will probably not take the delzacal once it runs out. She also put me on Prednizone. it did not agree with me. I was wired and jittery all the time and could not sleep. After a few days I stopped it.

I am only going to allow myself to try one drug. I just picked Entocort. I read that it is milder than prednizone and works directly in the gut. I am going to give it a shot and see if it agrees with me. After my obstruction scare though I was able to make myself about 60% better by going gluten free, and almost dairy free. I have just a little cheese now and then. I also take higher doses of fish oil with higher EPA, tumeric, and a intestinal powder formula that has lots of l-glutamine, aloe and several other herbs designed to support the intestinal lining.

I have read some of the horror stories from others with crohns. I do not know if there are both mild and severe categories, but I hope I just have a mild version. After a short term trial with Entocort I will see how I feel, but will continue on with my dietary changes. I was surprised how easy it was to give up gluten. By just doing that you force yourself to make better eating choices.

Does anyone else consider themselves to have what they feel is a mild version of crohns and that they have been able to keep the symptoms in check with diet and supplements or am I fooling myself. So far I have been doing it. If it were not for that damn obstruction I would not be in this position.
 
She prescribed pentasa which when I went to pick up was $900 so I did not take it. Then she prescribed Delzicol which was $400 for the month. I was not happy about that but I figured I would try it for a month. I am currently a few weeks into it. I have not noticed any changes. i was already feeling better by changing my diet. I will probably not take the delzacal once it runs out. She also put me on Prednizone. it did not agree with me. I was wired and jittery all the time and could not sleep. After a few days

Does anyone else consider themselves to have what they feel is a mild version of crohns and that they have been able to keep the symptoms in check with diet and supplements or am I fooling myself. So far I have been doing it. If it were not for that damn obstruction I would not be in this position.
First off, sorry to hear about all of your troubles. That is a scary way to be diagnosed. Not that any way is great, but an obstruction is painful.

A couple thoughts for you. In the cost of medications, sometimes doctors have samples that they can give you. I know I went through a time (a number of years back) when I was I between insurances. I talked with my doctor, as I was on pentasa at the time. And yes that drug is really expensive. He gave me samples for a couple of months to tide me over. Maybe this could allow you some time to see if the drug will actually work for you.

I personally think diet does have a lot to do to help keep an obstruction and keep diarrhea at bay. However of me personally (I do not have a mild case though), it did not do much if anything for my disease. Only the medications worked.

Because of your obstruction, your doctor needs to keep a close eye on you for a while.
 

Jennifer

Adminstrator
Hi stickersteve and welcome to the forum! :D

I'm glad to hear that the change in diet has helped with your symptoms. There are some members who are currently treating themselves with diet alone. Feel free to check out our Diet, Fitness, and Supplements section here.

As for "mild" or "severe" the disease is the same so if your symptoms are currently mild that doesn't mean they can't become severe or go from severe to mild. more reading on that here. Its also important to know that some people are asymptomatic meaning they have few to no symptoms and some of those members have mentioned needing surgery when before they felt perfectly fine.

I don't think you're fooling yourself by treating or wanting to treat with diet alone but its important to continue testing to make sure that everything is ok on the inside (yearly scopes during a flare and a scope every 2-4 years while in remission). You've already had an obstruction so that means you likely have a narrowing possibly caused by inflammation and/or scar tissue likely from active disease so its important to make sure that it doesn't get worse.

If you start having those symptoms of an obstruction again you'll want to go on a bland diet (low residue) and eat softer, smaller meals more often. You'll want to avoid any foods that tend to move through your bowels faster (like fiber for example) to keep things from backing up which can lead to pain, bloating, nausea and vomiting. Its also important to increase your fluids. If you can't eat because it causes a lot of symptoms then you can switch to a liquid diet until the symptoms reduce (be sure to let your GI know that you're doing this) and if you can't handle just liquids (have a lot of pain or vomiting) then you should go to the ER.

As for the steroids, I must say that suddenly stopping Prednisone can be dangerous. If you're on it for more than 10 days (I know you said a few days) you must taper off of it. Suddenly stopping it can be life threatening so be careful in the future (it sounds like you stopped it a while ago and that you're fine but I felt the need to mention it just in case). As for the Entocort, that's also a steroid and steroids are mainly meant for short term treatment to help reduce active inflammation but they do nothing to prevent it. Going on steroids over and over repeatedly to help treat active inflammation can lead to other health problems like osteoporosis so if possible, try to use it sparingly.

Thank you for sharing your story and keep us posted on how you're doing. :)
 
Jennifer, thanks for your reply. I am now on the Entocort and just picked up apriso today. these things are all so expensive. I passed on two other meds because they were between $400 and $800. At least the Apriso was $350 but I found a discount card on their site so it was about $250 out the door. I am still not happy about it but I am going to give this a try for a few months and see how it goes.
 
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