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Crohn's & Internal Bleeding
I have had Crohn's since 1990 and have had 1 surgery for a bowel obstruction and 1 for bleeding. In February of 2006 I started bleeding out with black tarry stools every time I had my menstrual cycle. Usually going from a Hb of about 8-9 to about 5-6. Over the course of a year I needed about 23 units of blood. I had multiple endoscopies and colonoscopies with no defining results. Since they could not find any obvious problems it was assumed that my problem was coming from a part of the small bowel that could not be seen. Finally in December I had surgery and had a section of my small bowel removed that they say was ulcerated. Also all of the infected area was taken out. After surgery, I remained on medication (Pentasa) and was fine for 4 months. This month during my menstrual cycle I am again having the same symptoms of black stools and bleeding. I am desperate for any advice or suggestions. Thanks
Cris
Cris
How do you know for sure that you have Chron's since there is no specific test to diagnosis it? What tests suggests or are indicators of Chron's for you?
I watched a show on TV about medical misdiagnosis. This certain female had problems similar to yours that seemed to be related to menstral cycles and pregnancies for years and was misdiagnosed for 9 years or so. She ended up being diagnosed with angioedema after an uncommon spefic blood test was performed involving the complement system for C-1 esterase inhibitor.
Have you been checked for an abcess?
Have you had a barium enema or a defacation proctograghy?
Also have had any ultrasounds, MRI, CT scans or other procedure besides colonoscopies/endoscopies?
I watched a show on TV about medical misdiagnosis. This certain female had problems similar to yours that seemed to be related to menstral cycles and pregnancies for years and was misdiagnosed for 9 years or so. She ended up being diagnosed with angioedema after an uncommon spefic blood test was performed involving the complement system for C-1 esterase inhibitor.
Have you been checked for an abcess?
Have you had a barium enema or a defacation proctograghy?
Also have had any ultrasounds, MRI, CT scans or other procedure besides colonoscopies/endoscopies?
How long you been fighting breast cancer?
Hi bip - hope I gave you my own simplistic view of Crohn's - which is a nasty, incurable, socially unacceptable disease. I have found breast cancer to be much easier to cope with,even though it had spread to my lymph nodes before being diagnosed at a normal 3 yrly mammo - if that makes any kind of sense. At least with bc there has been a lot of research done, and it seems as if daily, new chemos and meds are available to keep one in remission. Not so with Crohn's, where there is little research being done in comparison to bc, as so very few people are affected by it statistically. If you want to know more about it, my husband found pertinent information today on WedMD site - just put "Crohn's" in their search engine once you get on to the site.
I guess I have a positive attitude because I was told when first dx with Crohn's at 24 yr I would be lucky to live 5 years. I love doing research and found methotrexate myself on the internet, although it is not licensed by the mnfr for use in Crohn's in the UK, but can be prescribed by a gastro and I am lucky to have a young, very caring gastro who is passionate about IBD. He said with chronic Crohn's as I have, the quality of life, as done by researchers at the Mayo Clinic, is as poor as stage IV terminally ill cancer patients. I was suffering frequent heavy rectal bleeding - like turning a tap on, weight went down to 70 lbs, and had severe anaemia and malnutrition,besides the ever present diarrhoea and abdominal spasm pains. I guess my pain threshhold is pretty high now. I was hospitalised many times on steroid and antibiotic drips, blood transfusions etc. to bring the bleeding under control.
Do you remember the film about a small American child who had a very rare disease and no doctors could help? Think it was called "Lorenzo's Oil" or something like that. Susan Sarandon palyed the mother in the film. His dedicated Mum spent thousands of hours on the internet and found an industrial chemist in England, who had engineered some kind of oil, not for medical reasons, and she figured this may help her son. It did, and hence the film.
This kind of made me think: "Well, nobody is as concerned about my poor quality of life as myself" so I decided to do some research and I found methotrexate - it wasn't being used for Crohn's then, but as it was an immuno-suppressant (then, ironically, being used as a breast cancer chemo, and I went on some 3 years later to get bc) and knowing my Crohn's was caused by a malfunction in my immune system, I badgered my then gastro to prescribe it. He thought I was a "smarty pants" and I think only agreed to prescribe it to get me off his case. Thankfully he has now gone off to academia in Oxford, and the new guy is brilliant and patient friendly. He worked in a leper colony in Africa, and with Aids patients in London, before deciding to specialise in gastroenterology, and particularly in IBD. I live in a very isolated Napoleonic Fort in Cornwall right on the water, miles from anywhere (takes 2 hours by car and ferry to get to my hospital) and am so thankful that I have good medical doctors to cope with what my gastro said are "empirical problems". Hadn't a clue what that meant and didn't like to show my ignorance and ask him. My brilliantly intelligent husband said as we came out of the hospital: "Liz, it just means there is no precedent for your condition and he is flying by the seat of his pants." Made sense to me. Well, mtx has worked magically for me and given me my quality of life back.
Sorry if I have bored you, but you seemed interested in Crohn's, which hardly anyone is, yet it affects thousands of people in the US and England. There is a school of thought that it is prevalent in the Jewish Ashkenazi sect from Eastern Europe and every time I have seen a new GP or gastro (we have moved around a lot, both in England and Spain) they have always asked me if I have any Jewish blood. Not that I know of, but my elder sister thinks our maternal grandfather was Jewish, but the synagogue in the town he came from in England burned down in WW11 and all records destroyed. So, we will never know. Breast cancer is also prevalent in Ashkenazi Jews, but if so, I don't understand why my mother and elder sister didn't get either of my diseases.
Guess I am the runt of the litter. My late twin brother, who died of a non operable brain tumour at 50 yrs old, didn't get Crohn's either. It is a mystery, which I know one day, the scientists will crack.
Take care,
Liz.
I guess I have a positive attitude because I was told when first dx with Crohn's at 24 yr I would be lucky to live 5 years. I love doing research and found methotrexate myself on the internet, although it is not licensed by the mnfr for use in Crohn's in the UK, but can be prescribed by a gastro and I am lucky to have a young, very caring gastro who is passionate about IBD. He said with chronic Crohn's as I have, the quality of life, as done by researchers at the Mayo Clinic, is as poor as stage IV terminally ill cancer patients. I was suffering frequent heavy rectal bleeding - like turning a tap on, weight went down to 70 lbs, and had severe anaemia and malnutrition,besides the ever present diarrhoea and abdominal spasm pains. I guess my pain threshhold is pretty high now. I was hospitalised many times on steroid and antibiotic drips, blood transfusions etc. to bring the bleeding under control.
Do you remember the film about a small American child who had a very rare disease and no doctors could help? Think it was called "Lorenzo's Oil" or something like that. Susan Sarandon palyed the mother in the film. His dedicated Mum spent thousands of hours on the internet and found an industrial chemist in England, who had engineered some kind of oil, not for medical reasons, and she figured this may help her son. It did, and hence the film.
This kind of made me think: "Well, nobody is as concerned about my poor quality of life as myself" so I decided to do some research and I found methotrexate - it wasn't being used for Crohn's then, but as it was an immuno-suppressant (then, ironically, being used as a breast cancer chemo, and I went on some 3 years later to get bc) and knowing my Crohn's was caused by a malfunction in my immune system, I badgered my then gastro to prescribe it. He thought I was a "smarty pants" and I think only agreed to prescribe it to get me off his case. Thankfully he has now gone off to academia in Oxford, and the new guy is brilliant and patient friendly. He worked in a leper colony in Africa, and with Aids patients in London, before deciding to specialise in gastroenterology, and particularly in IBD. I live in a very isolated Napoleonic Fort in Cornwall right on the water, miles from anywhere (takes 2 hours by car and ferry to get to my hospital) and am so thankful that I have good medical doctors to cope with what my gastro said are "empirical problems". Hadn't a clue what that meant and didn't like to show my ignorance and ask him. My brilliantly intelligent husband said as we came out of the hospital: "Liz, it just means there is no precedent for your condition and he is flying by the seat of his pants." Made sense to me. Well, mtx has worked magically for me and given me my quality of life back.
Sorry if I have bored you, but you seemed interested in Crohn's, which hardly anyone is, yet it affects thousands of people in the US and England. There is a school of thought that it is prevalent in the Jewish Ashkenazi sect from Eastern Europe and every time I have seen a new GP or gastro (we have moved around a lot, both in England and Spain) they have always asked me if I have any Jewish blood. Not that I know of, but my elder sister thinks our maternal grandfather was Jewish, but the synagogue in the town he came from in England burned down in WW11 and all records destroyed. So, we will never know. Breast cancer is also prevalent in Ashkenazi Jews, but if so, I don't understand why my mother and elder sister didn't get either of my diseases.
Guess I am the runt of the litter. My late twin brother, who died of a non operable brain tumour at 50 yrs old, didn't get Crohn's either. It is a mystery, which I know one day, the scientists will crack.
Take care,
Liz.
Internal bleeding- you may have a fistula between your colon and vagina which could be the cause of the monthly bleeding. I have one which leaks liquid faeces into my vagina, but gastro says surgery will only make it worse, so I have learned to live with it. I would see your gastro and ask what he thinks.
Bip - Crohn's is an auto-immune inflammatory bowel disease, where the body's own immune system attacks the intestines, causing ulcers, crypt abscesses and occasional rectal haemorrhages.The cell abnormality is very similar to rheumatoid arthritis, which attackes joints - docs and researchers don't know why this happens, but have recently identified a gene, NOD2 in Crohn's patients, that is over-expressed. It can present in the small intestine, the colon, or both, as I have. It is not the same as IBS, which is not an auto-immune disease. Meds are prescribed to suppress these over active white cells, often steroids, but now there are newer immuno-suppressant drugs like methotrexate and cyclosporin. Both are chemo drugs and can be highly toxic to the liver and bone marrow, so monthly blood tests are a must. I have been taking mtx for 6 years now, with a 4 month break for FEC chemo for breast cancer, and am doing fine.
Take care both,
Liz.
Bip - Crohn's is an auto-immune inflammatory bowel disease, where the body's own immune system attacks the intestines, causing ulcers, crypt abscesses and occasional rectal haemorrhages.The cell abnormality is very similar to rheumatoid arthritis, which attackes joints - docs and researchers don't know why this happens, but have recently identified a gene, NOD2 in Crohn's patients, that is over-expressed. It can present in the small intestine, the colon, or both, as I have. It is not the same as IBS, which is not an auto-immune disease. Meds are prescribed to suppress these over active white cells, often steroids, but now there are newer immuno-suppressant drugs like methotrexate and cyclosporin. Both are chemo drugs and can be highly toxic to the liver and bone marrow, so monthly blood tests are a must. I have been taking mtx for 6 years now, with a 4 month break for FEC chemo for breast cancer, and am doing fine.
Take care both,
Liz.
Thanks for the Info. Im glad you are doing fine. You sound like you have a postive attititude, and very smart. thank you
I would go what your doctors says it is. Your digestive system is different when you have mensrtual period. What is crohns disease? I heard a little about but I have IBS is it kinda the same thing. When I am in my menstrual cycle my IBS is worst.
That's exactly it. The internal bleeding only happens around my period but no other time. I am thinking hormones are causeing something to bleed but after a year we can still not find out what so the doctors are assuming it must be my Crohns. Thanks for any help.
I would call your doctor and tell her/him what you are experiencing. Are you saying you only get black stools with your period and when you don't have it you don't have black stools? Just trying to help!!!!
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