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Possible Crohns - what to do now?

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Posted 2/14/2008 9:36 AM (GMT 0)
Hi all,

I'll try to keep this as brief as possible. This is my first post and I've read through some 40 pages of this forum already and know that I'll like it here, and hope to ask more questions in the future and maybe answer some for others.

I was diagnosed with Ankylosing Spondylitis 7 yrs ago and suspect I've had it since I was approx. 18 yrs old...I'm 35 now. For the last 7 yrs I have been taking Indomethacin (or Indocid...but basically an NSAID) with various other meds like Cytotec (sp?) to help alleviate the inevitable stomach problems. For the last year I've had almost constant D and kept complaining to my family doc about it. Recently he referred me to a GI who ordered up a bunch of things, such as blood work, colonoscopy, and a barium xray. I did the colonoscopy yesterday and the barium xray today. (BTW, Go Lytely really sucks!)

The GI that ordered these tests was the one who did my colonoscopy, and although I was sedated during the procedure, I'm sure I remember him saying everything looked good that he could see but he did do multiple biopsies that will be a little while before we get the results.

The barium xray was a different matter that really worries me. Firstly, I was seated with 4 other people that were all having the same thing done and as anyone whose had this done knows, you drink a couple of those horrible strawberry flavoured drinks and then keep getting xrayed (or whatever it is they do) to see how far the barium has traversed your system before you get the next pictures taken. All 4 of the others had 2 pics done and then were moved to another room where they got more pics done, and then that was it for them...they could go home. I ended up having around 8 pics done and was there for about another half hour to 45 mins after the last person left before I got moved to the next room!

Surprisingly to me, the radiologist was pretty candid about what he saw while examining me. He said about 2 to 3 feet of my small bowel was diseased and that my ileum was obliterated (obliterated being his exact word)! I wanted to ask more questions but was also pretty freaked out about what he already said, and in the end didn't ask anything because I was afraid of the answers. He then asked me if I had any abdominal pains (in which I answered sometimes) and then said I definitely have IBD. At that point I mentioned that I was aware CD is common with AS and he nodded his head and didn't say anymore.

I have suffered from D for the last year almost continually, and sometimes can't even finish a meal before I'm running off to the nearest bathroom. I also feel very bloated when I eat anything and it can sometimes take awhile before that feeling goes away. In the last year, I have lost over 70 lbs. At my peak I was 270 lbs. I am currently 191 lbs. At the point when my weight started to drop, my wife and I changed the way we eat to be a lot more healthier so I attributed the weight loss to that...but after a couple of months I started eating whatever I wanted and still continued to lose weight, although most often would suffer through more D. In all fairness, I think after the couple of months of eating healthy, I have never regained the appetite I used to have.

I was to call my GI today after the barium xray to book an appt. to discuss the results. My wife called his receptionist while I was having the barium xray done and the receptionist said the absolute earliest I would be able to see him is the 27th of feb. but I may get a call pushing that date back because of his busy schedule. Later today, the receptionist called and said the Dr. would like to see me on the 22nd. and advised me to not take anymore indomethacin or ibuprofen in the meantime. This really scared me because when a doc pushes up an appt. I don't think it's because they want to tell you good news!

My question to anyone who has read this far is: what's your take on the radiologist saying my ileum is obliterated? When he says 2-3 ft of my small bowel is diseased, is that signs of Crohns or possibly cancer? What's anyone's take on this whole matter?

I'm normally a pretty stable dude that doesn't worry about anything, but today I'm freaked right out! I'm regretting all the years of taking nsaids wondering if I have damaged myself, or if this something that would have happened anyways. Lastly, and I hope anyone that has one doesn't take offense, I'm terribly afraid that the radiologist telling me my ileum is obliterated means I have to have everything removed and end up with a bag. I don't know anyone who has ever went through that or has one, and I don't know anything about it...but it's all I keep thinking about. I figure if they remove the joint between the small and large intestine there are no other options.

Thanks in advance for anyone who managed to read through my ramblings (especially since I'm half in the bag! Best way to handle bad news that I can think of right now lol) and post any thoughts or responses.

-Pat
Posted 2/14/2008 10:20 AM (GMT 0)
Hi, Welcome to HealingWell, I read your post and you did not say if you had blood in your stool or not that is the one sign of Crohn's. I now weight lose is another thing. There is a possibality you could have IBS. I would wait until you see your Gi doctor.
Posted 2/14/2008 12:34 PM (GMT 0)
Hi Pat, and welcome! Sorry you are having problems. I would simply call and express what you've said here to your doctor's receptionist. Tell her about the radiologist using the word "obliterated" and you have worries of cancer and don't want this weighing on your mind until your appointment. Ask for either the doctor or his/her head nurse to call you with an explanation. I think this is very reasonable under the circumstances.

Good luck! I hope you get answers real soon!
Posted 2/14/2008 1:19 PM (GMT 0)
When a radiologist uses the term obliterated, I don't think it has the same meaning as say, "the when the bomb hit, it obliterated the house". The terminal ileum (where the small bowel connects to the large bowel) is often the most difficult areas to image with normal radiographic techniques. It is the last loop of bowel they are trying to visualize so all the preceding loops are already opaque from the barium. Usually the terminal ileum is sort of buried deep in the abdomen, almost in the pelvis. If there are opacified loops in front if it, then it is obliterated. Sometimes they can use a paddle to separate the bowel loops and get a photo, but not always.

Also, because it is the last loop before the colon, if the radiologist gets the timing wrong and the barium has already made its way into the large bowel, that can tend to obscure visualization of the TI.

I don't know much about cancer in the small bowel, but my sense is that it would not be as diffuse as the picture you described. Usually cancer in the intestines is more like a tumour and the symptoms arise when the growth starts to obstruct the flow of feces.

So sorry you are dealing with this burden now on top of your arthritis, but it is manageable. And remember, even someone who doesn't have crohn's can get into some pretty heavy duty problems from regular use of these NSAIDS. They are a miracle drug for those with chronic inflammatory pain but they come with some heavy duty side effects. But here's the thing, NSAIDS don't cause crohn's. So if your problems are associated with NSAID use they are most likely, and for the most part, reversible. IF you are dealing with crohn's, you aren't to blame because you needed to take NSAIDs.

As far as worrying about having a bag, I can understand your revulsion at the idea. No one looks forward to that possiblity. First of all, you are a long way from that decision, regardless of the findings. Secondly, permanent ileostomies are usually needed for people with wide-spread and raging inflammatory disease that doesn't respond to medical treatment. Your colon is healthy and you don't appear to meet the description of a raging inflammatory process. Much more likely that, if you have crohn's, it is of the simmering nature. I know a foot or two of bowel seems like a lot, but you have up to 25 feet of small bowel, so you can manage quite nicely if you have to lose a foot or so. And that's if you can't get things under control medically.

Hope this gives you another perspective to think about while waiting for your appointment. And please, visit often and share whatever is on your mind.
Posted 2/14/2008 2:14 PM (GMT 0)
I wouldn't worry about the cancer thing...if he would have thought cancer, I don't think he would have been giving you a blow by blow of the pics. He probably thought that you all ready knew you had IBD and he was just confirming it....I always get stuck with the ones who tell you nothing! Also, remember, he is just the one taking the pics, not the one reading them. Yes, obviously, you didn't have a normal barium xray, but your dr will take care of things on the 22nd.....relax! :)
Posted 2/15/2008 5:00 AM (GMT 0)
Welcome to Healing Well, Pat! I have both Crohn's and AS. Which came first I will never know because I had symptoms of both for years before diagnosis.

First of all, try not to stress too much over all of this as you await the GI appointment as that can really get the GI issues into over-drive. You don't want to make that diarrhea worse.

Second, your long term use of Indomethacin could very well be the cause of your small bowel issues. NSAIDs are known to cause ulcerations in the small bowels of something like 25% of the population that uses them long-term. That is reversible by merely eliminating that type of medication.

Third, AS is known to have a Gi component and CD is known to have a arthritis component. Most [not all] of the people I know that have both AS and Crohn's seem to have more symptoms related to the AS than the Crohn's. The meds to treat AS and CD are similar except for the NSAIDs. While you have managed for the last 7 years on the Indomethacin, it sounds like you need to get onto a different, non-NSAID med for the AS.

Please let us know what the GI tells you. We will all keep are fingers crossed for you!
Ides
Posted 2/15/2008 3:05 PM (GMT 0)
Thanks all for the responses. I will post new info as soon as I get it. If it is indeed CD I'm glad I was referred to this site and it came highly recommended. I was told there are a lot of caring, informed people here and you all have proved that true already :)
Posted 3/2/2008 9:23 AM (GMT 0)
Hi all,

Sorry I took so long to post my results. I now officially belong in this forum, yippee (please note the sarcasm)! Doc said tests conclude moderate to severe Crohn's Colitis (I don't understand why he keeps calling it Crohn's Colitis, I thought they were 2 separate things) with strictures as well. He has prescribed me prednisone; 8 5mg pills per day and wants to see me 2 weeks after for more tests to see if it's helping. If not, he said we may have to discuss surgery. He also strongly supports starting Remicade, which should also have the added benefit of helping with my Ankylosing Spondylitis.

Is the dose of prednisone I'm on seem average around here? I haven't noticed any effects from it whatsoever yet, but I've only been taking it for a week so maybe it's too early. He's taken all other meds away (Indocid, Ibuprofen) but increased my daily amount of Percocet to 10 a day from 5, which I'm happy about. The anti-inflammatory meds are apparently too hard on my gut to continue but the percocet is not supposed to be. I find percocet to be a miracle pill compared to all others, and I've tried just about everything...including oxycontin, mscontin, tramadol, amitryptilene (sp?), fentanyl patches, and I'm sure something else that I can't remember right now. Every time docs tried something new with me, I'd give it a go but always ended up asking for my trusty old percs back. He was surprised that I even asked to give up oxycontin in order to go back to the percocet and although I know they are supposed to be basically the same other than the time release factor, I just didn't find they worked as well.

The reason I mention all this is because I'm wondering if others use pain meds and find they help as well as I do. I have pretty severe AS which is the main reason for them, but an added benefit I've found is that they cause constipation, which I'd much prefer to the alternative. I do worry that maybe I'm causing more problems by using them as I do, but it really does improve quality of life for me. So now, the only thing I'm taking is 8 prednisone and 10 percocet a day (or less if I can get by). I'd appreciate anyone's opinion/warnings/advice etc.

That's it for now. Sorry I get so long winded here. I just love the fact that I can talk to people who have already traveled this path I'm on and can offer up knowledge and opinions as good, if not better, than my doctors can. I worry as I'm writing that I'm leaving out important details and tend to end up rambling...so I'll work on that :)

Take care all,

-Pat
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