Newb to the forum and looking for some advice

Crohn's Disease Forum

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Feb 19, 2011
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Guess I will tell about my strange battle with crohn's since I cant really afford to goto the docs right now and dont really want to. I first noticed that I had what I though was stomach problems when I was about 12. I remember laying down and my stomch would growl and hurt and you could watch my abdomen blow up and push out every now and again and it would do it for about 2-3 secs then like passing gas the bubble would go back down.

I would show my brother it and it would freak him out that my abdomen would do that. But when I was younger the pain was not so bad until I was about 16 and had a flare up though I did not know what it was. It started as just a few days of pain every now and again over the course of about a month.

Then eventually it got to the point that I did not even want to move and could not eat and would be in the bathroom every 30 mins with the dark black stools. We did not have much money growing up so we never would be taken to the hospital or docs but it got so bad I had to sleep on trash bags because I could not control my bowels and would goto the bathroom in my sleep and the pain was some of the worst I have ever felt.

Then my mom finally decided to take me to a family doctor and he ended up saying it was ulcers and gave me some zantac. I guess it just eventually cleared up on its own and from the ages of 16-23 I would have some small flare ups and days of pain but nothing huge and just wrote it off as ulcers.

Once I was 23 on me and my wifes first anniversary I had a huge flare up that started the night before and I struggled all night and was throwing up for about 6 hours. Then I started to notice a coffee grind look to the puke and even red blood. At that point I went and laid down on the couch and my 1 year old had just woken up and my wafe and her were both giving me a look like I had to go to the hospital.

Of course just like my parents would not take me I would not go but then I started to feel like my insides were coming out and I realized that I might be dead in a few hours if I did not go. So we went and after the scans and xrays and seeing that my guts looked like those link sausages but larger in places they knew they had to operate that night.

So after a bowel resection and a week in the hospital with that damn NG tube I was released with a packet about crohns and some meds for pain and to keep me from getting a infection. I recovered after about a month or so and went to see one of the only guys close by who would see me about my crohns and he just said if I have problems call but he was not going to put me on anything.

I was fine for a year and one week before I had a flare up. This time it started and instead of a day or two's notice I had about a hour and was in the worst pain of my life. Went to the hospital and they put in the dreaded tube and gave me some prednisone and waited until it was over. After about 3 days I was released and told to get a new doc (Story of my life)

So I went to see a new crohns specialist and the last one within 4 hours of my town. This guy looked at my files and wanted to do a colonosicpy and keep me on the preds. About a month later I had the colonosicpy done and he said he saw some scar tissue but nothing that looked like crohns so he figured it was just scar tissue but could not see the area where I was having problems and had removed in the past.

Then he did the same thing the other crohns doc did and said well call me if you have any problems and now another year almost exactly has passed and I started having problems again. It started about 3 days ago and I knew right away what is going on. I had some pred leftover from my last ordeal and cut a 10mg pill in half and started taking it 2 days ago. So in all only about 15 mg of pred so far.

I am still hurting and have every sighn that it is my crohns so now I decided to try a liquid diet since I am off this weekend but I dont know if I should keep taking the pred or what to do. Cant really seek medical help and so far everytime I have its been a very bad ordeal so any advice or tips for dealing with this flare up would be great!

and my wall of text is over and sorry for the bad grammar spelling ect.
 
Hi there welcome to the forum!! You have gone through what most of us have, and I am assuming you are in the US because they struggle with hospital visits and meds, and Crohns meds are not cheap. Pred does help but not 10mg, most start at 40mg, and cheap as they are, they should be a short term quick fix. I too just got off a short taper and so far I am ok. Bowel rest does help, and drinking Ensure or the clear stuff is a great healing way and still have nutrition in your body. I have had 2 resections and most times if they operate on emergencies , you can get infected alot faster.

Even tho most of us have scopes, they dont always see it, and I think CD can hide and when you are on Prednisone it can mask the symptoms. Most likely you may need an antibiotic, Flagyl is the cheapest, Cipro is expensvie, at least here in Canada. Pentasa is mild and so is Entocort but again, expensive. The only thing is if you ignore it too long you could be developing an abcess and that can be dangerous. Sorry I am not helping you too much. Stay away from dairy for a bit, kinda causes the bloat and pain. Glad you found us, ask away questions and tell us what country you are in so someone in your state or country can give you better advice and products you may or may not get. Hang in there ok. Keep us posted how you are doing.
 
Yup I am from a mountain town in the us and far from any decent hospitals or doctors. And thanks for the advice and the main reason I wanted to take so few prednisone is I hate the side effects but I guess I would rather have that than crohns pain.

Just wanted to add these forums are great though its not a good thing to see others have the same issues as me but if others have to go through it its good they can get advice from other people with crohns.
 

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