My Story - One of the "Lucky" Ones

[Where'sTheBathroom?]

I was diagnosed with Crohn's Disease 30 years ago at the age of 18, and am not sure if I am one of the lucky ones that was able to defeat it through surgery - or not...

I had some abdominal distress and went to a gastroenterologist who had performed an office exam and determined that I was nervous about starting college, and was prescribed Valium. OK.

My parents had gone on vacation and left me alone in the house. An 18 year old boy with plenty of Valium.... PARTY TIME!!!! But not for me...

Instead I was constantly running to the bathroom and wasn't able hold any food down. By the end of the week I was so fatigued that I couldn't even get off the couch. I would wake up, take a Valium, then drift off.

Upon their return, my mother immediately called a different Gastroenterologist and was told the next available appointment was weeks away. Hearing the distress in her voice, the reception had us come in as an EMERGENCY.

Here's where it all started... The doctor had sent me straight to the hospital (without passing GO). My diagnosis - I have Crohn's, had an obstruction that required resection surgery, and was within hours of death from dehydration.

The surgery had left me a drug addict - with my drug of choice being a healthy dosage of Imodium - which made me very tired. But at least I didn't have to constantly be on the lookout for a bathroom.

I have since stopped taking Imodium on a regular basis, replacing it with the occasional Vicodin when I am going out for a "night on the town". The opiate's side effect of constipation works well for me, and I do not get "high". (I don't drink alcohol, and my night on the town consists of being able to go to a restaurant and make it home without having an accident.)

Some doctors feel that I am one of the lucky one's because I haven't had a significant flare up since the surgery; although I live with diarrhea on a regular basis because my body lacks the ability to absorb bile juices. (Welchol helps a little - not much). I am grateful if this is the case, but don't really feel "lucky".

So, I just live day-by-day with some difficult coping skills. Eating one meal at dinner time when I am in for the evening on a normal work day, eating plain grilled chicken if I must socialize over a meal, and not eating at all on "special" days...

 

[SupportiveMom]

Thanks for sharing. I never had thought about opiate issues. I will put that on my radar for future.

So in 30 years no flare? No complication from resection? Is vicatin still an issue for you?

 

[superzeeman]

Try to get your doc to prescribe Cholystramine for the bile issue. It will also help with the loose stools. It is an old cholesterol drug that binds to bile and gets it out of your system. And will cause firmer stools if you take it twice a day. It will also take away the "bile burn" if you get that. I used to bleed from the irritation from bile.

 

[SupportiveMom]

Superzeeman, sounds like cholystramine worked for you. How did you get over the taste? My kid hated it more than EN and was hard to get her to take it.

 

[superzeeman]

I really didn't have a problem with the taste. Maybe the brand, generic, has less of a taste
To me it tastes like diluted orange juice. The thing hard to get used to
Is the grit. It does work well for me tho. Cured that bile burn which is why I
Started it.

 

[scrapr]

I mixed the cholystramine with orange juice. Tried once with water. Aaaaaccckkk

 

[Where'sTheBathroom?]

I am not sure whether I have had a flare up or not, because the constant diarrhea and other symptoms seem normal and may mask it.

I could not tolerate cholystramine - kept gagging on it no matter how I mixed it. Welchol is basically cholystramine in tablets. That had minimized the diarrhea but did not completely eliminate it.

This is also the first time I have heard of "bile burn" (thanks superzeeman). This may be what I associate as indigestion or heartburn. Symptoms are worse if I eat fried food - usually ended up vomiting...

Also, I very rarely take Vicodin because of the addictive effects of opiates. At most I take it once every two to three months - and only as a precaution when travelling to places where there are no clean bathrooms; which seems to be more problematic for males.

 

[Daisy123]

I take codeine regularly, nothing else helps with the diarrehea. It enables me to get out of the house. I have tried everything else. I take a Valium if out at an event because it also helps slow things down.

 

[Ali29]

Pain meds have never helped with the D for me - no clue why. I tried Questran-Cholestyramine mixed with OJ and was able to get it down - unfortunely, the bloating/pain was severe and had to be stopped but it did make somewhat of a difference but not 100%.

 

[superzeeman]

Bile Burn is way south of the stomach, lol. I got so bad that I bled rectally.