Crohns Diagnosis Today. Questions

[heartofwisdom]

Introduction and History

I am 53 year old female. I was diagnosed with colitis at age 19. I've had diarrhea with blood and stomach pains off and on all these years. Never went back to doctor becasue I was a single mom with a lot of kids.

The bleeding got really bad about 5 years ago. We lived in VA. I had all the upper, lower, colonscopy again-- nothing found. Swallowed a camera and becasue of iron meds couldn't see anything. Bleed a lot. I was getting iron infusions every week for anemia. Still no answers.

Then after a hernia surgery I didn't recover well. Had blood transfusions then finally open heart surgery (clogged left main artery). The stomach problems were on hold becasue of the heart problems.

I moved to TN. One of the heart graph collapsed. Second heart surgery in March 2008.

Bleeding got A LOT worse. I'd be in Walmart with trail of blood going through a pad and onto the floor. Or driving the car and fill the seat with blood. A few emergency hospitalizations from hemorrhage and 6 blood transfusions and no one knew why I was bleeding. VERY FRUSTRATING.

I blogged about some of this at "The Woman With the Issue of Blood"
and "View from the Back of an Ambulance"

New Doctor, More Tests

About four months ago I started the whole doctor thing again in TN. This time heartburn and acid refulx was horrible 24/7 and aspirin for heart aggravated my stomach.

The new doctor did all the test upper, lower, colonscopy, CT - He found cryptotis (he said was like a smoking gun). I had a barium meal (muffin and barium) then Swallowed a camera last week.

Today I got the news. Problems due to long term Crohns Disease.

• Barium meal revealed: several narrowed high pressured ares in my small bowel. The narrow areas stop food, build up pressure. Dr said they will probably remove part of my colon.
  
• Camera revealed: several ulcerated area, several areas scalloped villi, and a few hemmorrhagic foci and clumped mucosa. (Can anyone help me understand these terms?) And several area of hold up, bile entrance, and retained fluid.
  
• Other test showed Hiatial hernia and Barrett's esophagus (bile backs up into esophagus when things don't work)

I'm grateful to get any news after being told it hemorrhoids for years and knowing hemorrhoids do NOT bleed enough to have infusions and transfusions over and over.

Questions:

1. Dr sent me to hospital today for IV Solumedrol steroids. Its been 6 hours and I still have a HORRIBLE taste in my mouth.:confused2: Drinking makes it worse. Is there anything that will help?
   
2. My next test is in Nashville (I'm in small town) some kind of CT to check the narrowing. Dr said I would probably have part of my small bowel removed (I think the ileum) Does this mean I will have a pouch?
   
3. I start Prednisone 60 mg tomorrow. Are there side effects?

Thanks for any help.
Blessings,
Robin

 

[dayng1016]

Hi Robin! I'm sorry to hear your going through a rough time right now. I have not had surgery (yet), I'm sure it will eventually happen. It was recommended by my first GI, to have part of the small intestine removed. It does not necessarily mean you will have to have a pouch. I can't be much help on the solumedrol after taste, since I've never had it but I'm sure someone else will be able to give you some suggestions. There is a lot of really good information here. The side effects from prednisone differ from person to person. Me, I have never had any problems with prednisone, just always hungry, but never gained any weight from it. I hope you get some relief soon!

What part of TN are you in? I'm in Clarksville, my GI is at Vandy.

 

[kello82]

hey robin, welcome to the forum

i cant believe you have gone so many years with this horrible bleeding and everything. i find it very inspiring that you just kept fighting through all this hardship, it really shows your dedication as a mama.

im afraid i dont have much advice for you as bleeding isnt a big factor in my disease. but to answer some of your questions-

whether or not you have a bag depends on the type of surgery they will do. if they do a resection which would be just to remove the damaged length and then connect the two ends, then no you wont have a bag. but if they dont do a resection then you might end up with a temporary bag, and then they would do a reversal later. dont take my word on this, but this is just my general understanding of these surgeries.

the prednisone does indeed have side effects and they are varied and everyone reacts differently to it. the common ones i believe are: feeling hungry, mood swings (you feel psycho sometimes lol), a puffy face, weight gain, bone loss, sleeplessness, and headaches. for me at least, the longer im on the drug, the worse these syptoms get.

robin i hope that your next test gives some good info and that you can start feeling better soon. you definitly deserve it! look forward to hearing how everthing goes for you.

 

[lizzy_forrest]

Hello there, Robin. I recently got diagnosed too, and I know that it can be such a relief to finally get answers, even if they can be seen as "bad news."

Please keep us updated.