Can anyone tell me about Chrones without bleeding?

[snoozies43]

Seems i can't eat much of anything and get tired easy. I have had a colonoscopy, and ultra sounds.All normal. I also have Barretts esophagus. all i am on now is Prilosec, and an anti-anxiety med. Going in for further testing on tuesday-bloodwork. Could this be non hodgkins lymphoma?

I have alot of join pain, acid build up, also intermitant diarhea, sometimes hot & cold, among several other symptoms that flare whenever i eat something. This has been going on for more than 3 yrs!!!. They say it is only IBS. Well i have been trying to deal with that for over a year.

Your help is appreciated,
Snooze

[lizziecee]

Welcome to the Crohn's Community forum, where I hope you can get the support you need.

It is entirely possible to have Crohn's without bleeding as I can relate from my own experience. I was dx in 1970, only symptoms severe weight loss and diarrhea. I had a good appetite, no pain and no bleeding.  Eventually a laparotomy was done (no scopes in thise days) and some 15 different areas in my small intestine were inflamed. Biopsies confirmed the Crohn's diagnosis. Only treatment then was steroids.


I guess my first rectal haemorrhage (a lot more than blood on the paper or in the stool) was in 1985 when my husband and I retired to Spain. I was treated in hospital with IV prednisone and had 3 transfusions. Since then I have had 4 more hospitalisations for heamorrhages, but have not had any since being on methotrexate injections for the past 7 yrs. I guess I was lucky in going 15 yrs without any bleeding whatsoever. Not all Crohn's have it for life, so my gastro tells me, one or two inflammatory episodes and it burns itself out. Mine is now PanCrohn's Colitis - from the mouth to the anus, but in remission with methotrexate thankfully.

If Crohn's is suspected, as far as I am aware,the only procedure for a definitive diagnosis is an upper  endoscopy of the GI tract (oesophagus,stomach,small intestine) with biopsies of inflamed and/or damaged tissue which is looked at by a pathologist, who willl make the diagnosis. Crohn's usually, but not always, starts in the small intestine, around the terminal ileum - on your right side, next to the appendix, hence the pain in that area. My initial dx was delayed 9 months because I did not "present properly" with pain.  Some blood tests may help in the diagnosis, such as if your white cells are elevated, but cannot provide a dx to go ahead with treatment.

There is a calprotectin stool assay test I have occasionally (cheap and easy to do, you just give a stool sample) which, if the calprotectin level is elevated (normal is 20, mine is often 40+) means there is inflammation somewhere in the GI tract, but not specifically where. This gives the gastro enough information to go ahead with invasive testing, such as scopes/biopsies.

I know very little about non-Hodgkis lymphoma, although I do have a friend who was dx with this 5 yrs ago. Her only sympton was an enlarged lymph node in her groin. She had surgery and chemo is doing fine today. I hope you get a proper dx of your symptoms soon, and appropriate treatment.

Take care,
Liz.

[citygirl259]

Hi
I've had Active Crohn's disease now for 11 years.  I never expereinced bleeding until just recently.  I've had a colon resecection about 4 years ago was symptom free for about two years  after surgery then it became active again. Recently it has spread and symtpoms have increased like joint pain and vomiting has become more frequent as well as the other commoner symptoms.  i've tried steriods and remicade as well as humira nothing seems to work.  Any one have any other suggestions? I'm scheduled for a colonoscopy next month.

[lizziecee]

Hi - welcome to our Crohn's community where we hope we can offer you support and our own experiences.

There are a number of other drugs available for Crohn's now, e.g. azathioprine and methotrexate. Besides Humira and Remicade, there are other anti-TNF biologic drugs viz:
Certolizumab pegol (Cimzia)
Natalizumab (Tysabril).

I have had Crohn's for 38 yrs, since I was dx at 26, and have tried many drugs, including steroids (prednisone & entecort), 6-MP, Flagyl etc but found the only immuno-suppressant to keep my disease in remission has been methotrexate, which I have taken for some 7 yrs now. Initially I was on 25 mg tablets once weekly, but some 2-3 yrs ago my gastro switched me to 12.5 mg injections once weekly.

Because Crohn's affects the whole of the intestinal mucosa, it can be difficult to properly absorb tablets, which is why I self inject the mtx now. This way we know exactly how much of the drug I am metabolising. My symptoms have diminished significantly and I can live a normal life if I stay on the medication.  Mtx is a cytotoxic antimetabolite drug which can have serious side effects (but so can aspirin to some people), and my gastro said we have to weigh up the risk vs benefits, particularly to quality of life.  I do have comprehensive monthly blood tests, particularly for the liver and bone marrow, but this is a small price to pay, I feel, for the quality of life without having severe diarrhea, bleeding, weight loss, and that general unwell feeling.

Perhaps you can talk to your gastro and see what he/she thinks about trying another drug, such as I have mentioned. My gastro told me I will be on some kind of immuno-suppressant for life, and this I have accepted....with good grace!

I do hope you can find a drug that can keep your disease in remission.

Take care,
Liz.