Hey Lizziecee!

Hey Lizziecee! I wrote to you on my last post. You probably didn't see it. It is getting rather long, lol! Just wanted your opinion. Thanks! :)

[lizziecee]

Hi there - I have been away for a week at a family wedding - no computer access! I've checked the last 5 pages on here and can't find your post. Was it under your screen name, or a reply to someone else's? Do you know when it was posted?
Am always happy to help if I can.

Liz.

[April2]

That's ok! It was under the post titled "Anyone here with Crohns who can give advice? But you can answer here if you like. I was just saying that I haven't seen the Gastro doc yet. My appointment is mid October. My surgeon acts like he's not even sure I need to see the Gastro doc yet since I don't have a lot of symptoms. However, I forgot to tell him that I have had diarehea or very loose bowel movements the last few weeks. It's been about 7 weeks since my surgery. The first week or two I was careful about eating bland or liqued diet. After that I went back to eating normally. I'm wondering if I have a food intolerence or parasite or if it's the Crohns or result from the surgery or what! Do you think I should go ahead and see the Gastro doc or maybe just my regular Family Practice doctor? We haven't gotten back the second pathology report yet. They don't know what to think. The first pathology report said it looked like a classic case of Crohns but since I didn't have a lot of symptoms according to the surgeon, he wanted another opinion. He's wondering if it was just an ulcer. But why would I have an ulcer and what caused it? Also, I did have some symptoms like the loose bowel movements and stomach pain but no vomiting or losing weight. That's why he thinks maybe I don't have Crohns. I don't know. I'm so confused! Just wanted your opinion. Thanks!

[lizziecee]

Hi April,

Gosh, not sure what to say. Crohn's disease does not always "present" in the same manner, i.e. I had no pain for some 9 months, just severe weight loss and constant diarrhea, even though I was eating well.

My first physician some 37 yrs ago, advised me to try and stay out of the hands of surgeons, as he said the more intestine they resect, the worse the diarrhea becomes. In all these years, I have never had a resection, but some bad flares with horrendous rectal bleeding from ulcers and crypt abscesses, which have required hospitalisation.  However, a recent endoscopy of the small intestine showed I now have a stricture in my small intestine, and my gastro says the only solution is surgery to cut out that part, as if it burst it is life threatening. He has told me to go the ER asap if I get severe abdominal pain. Not sure what he means by "asap" as I live at least one and a half hour's away from the hospital, by car and ferry.

I would certainly go ahead and see a gastro - surgeons just cut, they don't, here in England anyway, prescribe medications and ongoing advice to stay in remission.   The one thing you must find out is if you have Crohn's or not. The biopsies should prove the dx conclusively. If it is indeed Crohn's, there are excellent immunosuppressants now to keep the disease in remission.

It is possible you may have a food intolerance. At the start of my journey to dx, I was put on a lactose free diet - some horrid powdered milk I got from the pharmacy. Then they put me on a tartrazine free diet (the orange colouring found in orange drinks, baked beans etc. and a lot of other foods) - neither made any difference to my symptoms. If colonoscopy or endoscopy had then been available, perhaps I may not have needed the laparotomy, as I could have gone straight on to steroids.

Being rather cynical about American private medicine, as are my doctors here, I wonder if the surgeon just wants the fees he gets from seeing you, rather than your seeing a gastro, who is probably the only professional specialist to properly diagnose your problem. I would also hesitate about seeing your regular family doctor - they are not specialists in gastro problems, at least not here, and I very rarely, if at all, see my GP about Crohn's problems. I have an assigned specialist IBD nurse whom I can call at any time, and she gets me an urgent appt with my gastro.

Hope I have answered your immediate questions. Please feel free to contact me again if you have further queries, or I have missed something. I know how lonely and isolated it feels with an intestinal problem - sometimes I feel like a leper - which ironically, my current gastro worked with in Africa before doing his Ph.D in gastroenterology.

Take care - and please - go to the appt with the gastro. You might have nothing to worry about and that would be such a relief.

Another thing - ask the gastro if he can do a Calprotectin assay test of your stool. If out of range, this will flag up an inflammatory problem in your intestines - but not isolate where. This will be enough information for the gastro to do other invasive testing. I have them regularly, and they are always out of range, so my gastro changes my chemotherapy.

"Just an ulcer" concerns me. My pathology reports on colonoscopy always state:" many patches of ulcers and crypt abscesses from mouth to anus". Whatever is causing the ulcer needs proper diagnosis, not just a remark off the seat of the surgeon's pants!  Crohn's disease "skips" in the intestines, whereas Ulcerative Colitis (which only affects the large bowel) does not - it affects the whole colon

really messed this up - got friends for dinner in 10 mins so was hurrying to answer.

Love, Liz.

[April2]

Thanks for writing back! Actually, I don't think the surgeon is worried about being paid since he's military and we get free military care! :) He does have to refer me off base thought, since they don't have a Gastroenterologist on base.

I'll try to remember to ask the Gastro doc to do these tests that you mention, thanks. I wish I could figure out what's going on with me. It doesn't seem to matter what I eat.

The ulcer that they cut out was in the terminal illeum (the small intestine at the site where it connects to the large intestine), there was also fibrous scar tissue that was causing some restriction so they cut that out and the ulcer and reconnected everything back up.

The interesting thing I thought of was that I had H.Pylori a few months ago and they gave me antibiotics for that. I still was having stomach pains and they did another blood test and said that it was still showing positive but that once I have had H. Pylori I will always show positive. Since H.Pylori can cause ulcers in the stomach I wondered if there could be any connection. My surgeon said no, he didn't see how it could be connected since one is in the stomach and one in the small intestine. But isn't it all part of the digestion tract?

I don't know. It's so hard sometimes to get the military doctors to refer you to specialists because of the military insurance. I'd like to see a nutritionists or allergist too to see if I'm reacting to any type foods. I've been asking my family doctor for a long time to refer me to one and he won't do it. I can't go to one without a referral. Usually the military is pretty good about stuff, but sometimes it can be a real pain.
Well thanks again. Talk to you later.

[lizziecee]

Hi April,
I apologise about my remark on American doctors - I didn't know you are in the military, and therefore cost is not a consideration. Just recently I decided that I needed to be tested for the HER2 gene overexpression, to see if I was positive, and then could have Herceptin. (This is for breast cancer). The test was not done when I was dx in Jan 2003, but Herceptin, after a long battle with our National Health Service, has now been approved for HER2+ bc patients in England.  I had to go privately, but still saw the same Oncologist that supervised my chemo on the NHS He told me in no uncertain terms that even if I was +, he would not prescribe Herceptin, as I was too long out of chemo. I then told him that Herceptin is prescribed for US bc patients, no matter how long they are out of chemo, and he responded that American doctors will prescribe any test or medication you want, as they are getting paid for each consultation and prescription. Pretty cynical. I did have the test, and luckily I was HER2 which was a relief, as I didn't have to struggle with getting Herceptin.

I don't know much about H.Pylori, except that a gastro I had in London some 22 years ago (now unfortunatley deceased through a brain tumour at only 42 yrs old) was part of the original team that did the research on stomach ulcers, and found that in many cases, H.Pylori was responsible. No gastro has ever mentioned that my Crohn's may be due to H.Pylori, so I guess it is just a condition that affects the stomach rather than the small and large intestine. To my knowledge, I have not been tested for H. Pylori. You might try googling H.Pylori and see what technical information is available. Yes, the stomach is part of the whole GI tract, and Crohn's can present anywhere from mouth to anus, and sometimes can affect the eyes, so I do see the logic in your thinking. I just don't know enough to give you any scientific information on Crohn's - I can only go on my own experiences as I have never met anyone with Crohn's to be able to discuss symptoms. A gastro is the specialist to ask these questions of - and please let me know the answers!  

I can now understand why you had surgery - for the restriction - but I would be asking what caused the ulcer? Just cutting it out does not seem to me at least, to have solved why it happened in the first place. And, what can be done to prevent a recurrence?

I wish you well with your forthcoming consult with a gastro, and some answers that will alleviate your current symptoms and get you back to normal health.

Take care,
Liz.

[lizziecee]

Hi -
P.S. I meant to say I was HER2- (negative) in case my post was confusing.

Liz.