Please help me understand

[heameljon]

I have had Crohn's in the area where my small bowel ends for the past 18 years, have had two small bowel reductions. In May last year I ended up in the hospital and the GI told me that the Crohn's is now also in my large bowel, I understand this as Crohn's can occur anywhere in digestive tract. I could have sworn he called this Crohn's Colitis which made somewhat sense because I associate UC with the large bowel so Crohn's in the large bowel = Crohn's Colitis. Well, I have had a bad stabbing pain to the left of my belly button for over a week, not eating cause it made the pain worse. Called Dr. He said he thought it was a kidney stone, I totally disagreed but was willing to give him the benefit, he said to give it the weekend and we would reassess on Monday. Saturday morning I filled the toilet bowel with bright red blood and pain was a level 10. Went ot ER, had CT scan and Dr. Said it was just my Colitis. I didn't get to question her because they started to give me straight potassium via IV and I literally started to scream from the searing pain and the Dr left and never came back. I am sure I am now the difficult patient due to my demanding that they stop the IV.

So, did the ER Dr. mean Crohn's Colitis or are we adding UC to the already diagnosised Crohn's? I am going to talk to my GI tomorrow, I want to test eating today so I can give him a full report on the pain, and I will be asking him about it then but I was wondering what terminology others heard of or use to describe Crohn's in both bowels.

Also this new development has made me realize that I need to get a better understanding of what is normal and tolerable so I am not running to the ER without need. Large amount of blood in toilet is OK? Stabbing pain in side for a week or two is OK? Do people have pain meds on hand for when the pain is that extreme to help you get through? If I didn't already have percocets for my fistula I wouldn't be making it right now. I had called the on call number and had gotten the go ahead to go to the ER but now I feel like I wasted people's time on Saturday morning. What is extreme enough that would warrant concern?

 

[chrisnsteph1022]

New or worsening bleeding needs to be told to your GI. I have percocet on hand for pain and am not surprised to see blood now and then. But that's my 'normal' for this flare so if it were to get worse, I'd do something about it. I wouldn't worry about wasting people's time in the ER. If you're concerned, that's what they're there for.

I also have Crohn's colitis-meaning Crohn's in the colon/large intestines. It's also in my terminal ileum, but my GI classifies it as Crohn's colitis. Technically, it's probably ileocolitis.

 

[heameljon]

Chrisnsteph, thanks I was pretty sure I heard Crohn's Colitis from my GI but the Dr. and nurses in the ER kept saying Colitis, Colitis, Colitis even after I added the Crohn's they wouldn't ever say Crohn's. I googled Crohn's Colitis when I got home but couldn't hit on the two together.

I had finally gotten a good understanding what was "normal" for me and things had to go and change. I never had visible blood before and then to have that much blood was a bit scary. A friend that has Crohn's told me yesterday that she often has blood and this is her "normal". I realize that we are all different so no one's Crohn's will be the exact same. I might have not freaked so much about the blood but my husband saw it and it upset him which then worried me. I have always had input in what treatments I receive and now I feel completely lost.

 

[Rebecca85]

Colitis just means 'inflammation of the colon' like tonsillitis is inflamed tonsils, appendicitis is an inflamed appendix. Colitis has many causes including UC and Crohn's.

They probably didn't use the term Crohn's because firstly they like to shorten things as much as possible, secondly colitis is a more accurate description from their point of view, they could not be sure from the CT if you have Crohn's or UC or what, but they were certain your colon was inflamed!

As for blood, if it isn't normal for you, I would still say to contact your doctor because it could mean a worsening of your condition, and you may need to tweak your meds.

 

[DustyKat]

As Rebecca has said, Colitis is a term used to describe inflammation of the large bowel, regardless of the cause.

Now when it relates to Crohn's, Crohn's Colitis is used to describe disease that is confined to the large bowel only. The fact that you already have ileal disease means your type of Crohn's is Ileocolitis.

Dusty. xxx

 

[moogie]

Simple way to know... has this happened before if not it's not normal,

You have to knw your body and always err on the side of caution. If the people in the ER blasts you they are paid by you to do this job. Remember that,

Stay strong

 

[Angrybird]

I agree with the others, if blood is not normal get straight on the phone to your GI/IBD nurse,if they do not geet back you quick then go to A&E. I am lucky that I get a quick response from my nurse so have not actually had to resort to going A&E yet. I nearly did go just before xmas because I developed my new issue - throwing up until there was nothing left but green bile (nice!). The only thing that stopped me was the fact I was going to the hospital anyway 3 days later for a colonoscopy. I am also more than likely my own worse enemy, I would rather wait for a call back from my nurse rather than waiting for hours on end in the A&E where I really know more about what is going on than they do. I will also put up with pain for a fair while, even after my op I was only giving it a pain score of 5/6 out of 10 thinking well I have never broken a limb or given birth...that may be more painful, the stricture certainly was! How are things for you right now? Have you been able to speak to your doc/nurse? I am glad you have decided to join us, sending lots of gentle hugs :hug:

 

[heameljon]

Angry bird I am like you, I will suffer through the pain. For my two surgeries I only took pain meds the day of and once in the morning after to get out of bed. Last year when I was really sick, no eating or drinking for four days, because it was Easter weekend I held out until Monday to call the after hours line and see the Doctor. Unfortunately now with the Crohn's moved down into my large bowel Things seem to be different. I have more D, more cramping, way more mucus, and a pain in my left side in addition to the old pain on the right. I have never had blood but my thinking was maybe this is more common or more noticeable when the Crohn's is inflamed lower in the bowel.

I am very happy to have found this forum, it has so much information and everything is so well organized and everyone is really great.

 

[Angrybird]

It could be this is the way your body reacts to inflammation in this area, my current flare up is down to crohns colitis in the the colon as well. It is annoying and disheartening when you think the disease is just in one area and then it shows its ugly face somewhere else Have you been able to get in contact with you GI?

 

[heameljon]

I agree, very frustrating. I am going to call him today.

 

[Angrybird]

Cool, let us know how you get on.

 

[heameljon]

Spoke with the doctor and I can tell he is perplexed as to what else to try. He called me "special", but aren't we all? I know this may sound bad but he hasn't given up and he has been experimenting with all different combinations of things the past year so I guess we are going to try the Humira/Cipro/Prednisone/Flagyl/Asocol combination for the next week. The sharp pain in my side is a constant but it is a 7 and hasn't gone back to a 10 since Saturday so I can live with the 7 and no blood since Saturday.

Thanks everyone that gave me input on the bleeding. I think that was what scared me the most.

 

[Angrybird]

Well at least your doc is still trying to sort things. Glad things are a tiny bit better but obviously not ideal. Keep us updated on how you get on :hug:

 

[heameljon]

I am in the hospital now and I have finally given in to having a temporary ostomy. They have to remove a third of my colon and let me rectum heal. I have been fighting the surgeon on this for a long time and I am still not totally comfortable with this because I read a thread here about someone having difficulties with blow outs and I am not certain I can deal with all that. I know I need to go to the soma subforum and try to get more educated about what is going to happen to me next week but I don't think I am brave enough to. I should feel fortunate that this is supposed to be just temporary.

 

[Angrybird]

Hi there, really sorry things have got to this stage Please try and have a look at the stoma forum hun, I really think it wiil help you :hug: As your in the hospital does that mean the op is going ahead in the next day or so?

 

[heameljon]

I am in the hospital. They have me on TPN to try to put a couple pounds on. Surgery will be next week but as of Friday the doctor didn't know which day. I am hoping for Tuesday so it gets done and I don't have to think on it much more. I ventured into the stoma forum, will try to read some threads tomorrow. Was a bit frightened by the thread that had something in the title about the bag blowing out when they were sleeping.

 

[Kela80]

I had a sub total colectomy end of November and have a temp ileostomy which sounds like what your having. I feel 200% better and feel like I'm living my life again. In 3 1/2 months I've had 4/5 leaks and only 1 of them was messy which was caused due to excessive gas and the wafer lifting slightly. I don't see how a bag would just bust or blow out.

I find that if I eat late or I'm gassy leading up to bed time I have 15mg of codein phosphate which slows and calms things down. Don't stress about the stoma, when the doc told me the first time 1 yr before my surgery I said "no way ". Things got so bad I was more than happy to have the ileostomy and I'm so glad I did.

I really feel like I'm living life to the fullest again, wish I had done the surgery much earlier, but I know GI's use it as a last resort because to some of them they see it like a failure, from my end it's anything but.

All the best