Can anyone dicipher these results? Lizzie?

[April2]

I'm hoping someone can help me dicipher these results. I just had a colonoscopy and endoscopy yesterday and this is what they gave me:

Endosopy:
Multiple dispersed, small non-bleeding erosions wee found in the gastric body and in the gastric antrum. There were n stigmata of recent bleeding. Biopsies were taken with a cold forceps for histology.
Localized mildly erythematous mucosa without active bleeding and wit no stigmata of bleeding was found in the duodenal bulb. Biopsies were taken.

Colonoscopy:
The terminal ileum contained a few six mm ulcers. No bleeding was present. Biopsies were taken with a cold forceps for histology.
There was evidence of a patent end-to-side ileo-colonic anastomosis in the ascending colon. This was characterized by erosion. This was biopsied.
A sessile polyp was found in the ascending colon. The polyp was 6 mm in size. The polyp was removed with a cold forceps. Resection and retrieval was complete.
Internal, non-bleeding hemorrhoids were found during retroflexion.

They prescribed to me Nexium, Entocort EC, and Flagyl.

I'm surprised they think I have too much acid in the stomach. I've never had symptoms of acid reflux or gerd. I'm also surprised they said I had hemorrhoids. I've never had bleeding or problems that I'm aware of.

Can anyone decipher any of this? Lizzie, you seem pretty knowledgable and have had to deal with a lot of testing. Can you help me out? They said it will be 7 to 10 days to get the pathology report back and to see the doctor in 8 weeks but I don't want to wait that long to understand what all this is. I'm not very patient, I guess! :)

Thanks for any help. LIzzie, I hope you are doing well. Looking forward to hearing back from you. God bless.

[lizziecee]

Hi April - a quick update on my visit to the hospital yesterday - 4 long hours of examinations,tests and consultations. The great news after a mammo of both breasts and an ultrasound of the tumour breast, no recurrence. Both my bc surgeon and the radiologist are of the opinion the changes are due to the after effects of radiotherapy (I had 25 gys and 2 boosters), which he said can occur up to 40 yrs after - does he see patients in their 90's I thought?!!

That was fine, but he then surprised me by saying he is referring me to a Professor of Endocrinology at the same hospital. He wants me to stay on Arimidex because I had lymph node spread, but because I have bone density loss, osteopenia, and had two spontaneous fractures in both feet last summer, he is concerned and wants another opinion. I am already taking alendronic acid and Calcichew/VitD that he prescribed, but there is a newer drug called Zoledronic Acid, which is given as an annual infusion in the hospital (I currently take tablets) which has had amazing results in reducing fractures by 30% in a recent study. He said it is being used at my hospital, but as he is a bc surgeon, not a physician or indeed an Endocrinologist (didn't know we even had one of these rare specialists at my hospital), does not know much about it and thinks Professor Wilkin is the guy to He is setting up an early appointment so we can decide whether to continue the Arimidex and change to zoledronic acid.

I feel so very relieved that there was no recurrence, and my continuing treatment is being addressed properly. Can't wish for more than that.

He said I now have to focus on the strictures in my small intestine - still waiting for my gastro to contact me when he gets the radiologist's report on the MRI scan.

Hope you are okay - please let me know when you get the pathology results. Let's pray for good news.

Liz.

[April2]

Lizzie, I pray everything goes well with your doctor's appointment. I pray that all's well with you. Let me know how you are doing, ok?

Oh and it was London where I visited. We weren't actually stationed there. This was when I was a kid and my dad was in the military. We were stationed in Germany and Spain for awhile and just went around visiting different countries like England, Scotland, France, Italy. Wonderful memories. I probably will never get back there. I'm grateful for being able to do and see so much. I love to see and visit new places!
Thanks again for all your help. Keep in touch. I wish you well. God bless.
April

[lizziecee]

After talking to many of my previous doctors about diet (I have moved around England a lot and lived in Spain 8 years)  they have without exception told me to follow a good balanced diet, high in protein, low in fibre and exclude foods that cause abdominal pain or explosive diarrhea.  I did talk to my current gastro a couple of years ago about probiotics, he shrugged his shoulders and said, take them if you wish, they won't do you any harm, but frankly you are wasting your money. I really do trust this guy - he worked in a leper colony in Africa, then with Aids/HIV patients in London, and is one of the best doctors I have ever seen. He is intrigued by my "multi-factorial" problems and always gives me about 40-45 minutes in an NHS gastro clinic, explaining various matters to me. The norm on the NHS is 10 mins, so I am fortunate in that he realises I have serious problems and want to understand how to control my disease. My bc surgeon told me some years ago that I will probably die from Crohn's than breast cancer, and I thought he was joking, trying to make me feel better about the bc diagnosis. Perhaps he is right. I don't care anymore - I just try to take my meds and live a calm and happy life.

If you wish to go the "natural remedy" route, that is your prerogative, but it is not for me. I don't eat junk or fatty food, my only vice is a few glasses of wine in the evening, and of course, smoking, which my gastro always is at pains to tell me to give up.  

I found when having chemo and radiotherapy for breast cancer, that complementary therapies helped me, rather than some crazy alternative meds like the Gerson diet and other "snake oil" type diets.
I had some Chinese acupunture, reflexology,aromatherapy sessions, etc to calm me down, and best of all, my husband paid for a close female friend and I to go to a health farm for 5 days. It was utter bliss - good food, massages, facials, pedicures, hydrotherapy exercises every morning in the indoor pool, dance and exercise classes, and we were allowed wine with dinner. It cost him some $3,000, but as I had been on hospital prescribed Fortijuice for 4 months, no solid food whatsoever, and severe faecal incontinence, it was just what I needed to perk myself up and come to terms with my cancer.

We are all different April in the ;way we handle serious chronic illness - some of the women on my UK bc site go to a residential holistic centre in Bristol, England, horrendously expensive and end up eating wheat grass and raw veggies and meditating. Give me decent low fibre food and salsa dancing classes any day!   With Crohn's I just cannot do that without seriously compromising my health.

Immuno-suppressant drugs......Crohn's by definition, is an auto-immune disease (as is rheumatoid arthritis, which I have, psoriasis, which I have, and lupus which I thankfully don't have). As far as I understand it, my body attacks itself, in the case of Crohn's the intestines, usually starting in the small intestine. When I was first dx a young female Registrar explained it to me as: when you get an infection, the body automatically makes more white T cells to fight off the "invader", but returns to normal. With an auto-immune disease, this mechanism does not turn off, and the white cells attack your own body. Does this make sense to you?  The immuno-suppressant drugs do exactly what it says - dampens down the immune response so the body is not attacking itself.  Yes, taking immuno-suppressants does make me more vulnerable to infections, and I steer clear of places with crowds and small children with childhood illnesses.   I regularly take the antibiotic Ciprofloxacin - a regime of 5 days on, 5 days off, and this does help keep any inflammation/infection under control.

Where did you visit in England? Guess one of the US military bases. We now live in the far South west of England, right on the sea on Plymouth Sound. Quite exciting in the winter with Force 10 gales and waves crashing outside our apt on the black rocks below. You can take a look at our rented holiday apt here if you want to see the Fort - you can find it at: www.tinyurl.com/2ouf7n - you may get a surprise!

Off to see the breast cancer surgeon tomorrow about this troublesome breast, having a mammo, ultrasound and possibly a biopsy to determine what is causing the problem.
Talk to you soon.

kind regards,
Liz.

[April2]

Thanks Lizzie. What do you think about natural methods for helping with the Crohns symptoms? I've been reading and I've always liked the idea of being more natural if I can. I read that it's good to take fish oil and flax seed oil, probiotics, and digestive enzymes to name a few. Also aloe is supposed to be soothing for the stomach. I picked up a book on natural remedies for digestive diseases. I find it all interesting. I want to really get more healthy this year anyway. Someone in my Bible class gave me her doctor/chiropractor's business card. He's a homeopathic doctor. She said he did wonders for her. I also talked to my mom about it and she's really into the natural things and thought it'd be a good idea to call him and talk to him and see what he says. Like I said, I've always found natural remedies interesting. I'd like to educate myself more on that. I talked to a guy who worked in our local health food store and he was pretty knowledgable about good digestive health. So I'm learning! I feel better today. I went out to my local health food store and picked up the things I mentioned. I'm going to give them a try.

Can I ask you a question? You said you're taking an immune suppresant, right? Does that mean it weakens your immune system? Wouldn't that be kinda dangerous or make you more suceptable to sicknesses and such? And if so, how do you counter that? Do you have to take something to build up your immune system then? Just wondering. I know I have a lot of questions but that's how we learn, right! And I'm trying to learn all I can! :)

By the way, I visited England a long, long time ago. It's a lovely place. I'd love to go back overseas but it's probably not likely now that my husband retired from the military. I've always loved going to see new and different places. Just don't have the money to do it right now! Such is life. Talk to you soon I hope.

[lizziecee]

Oh April, apologies if I seemed uncaring - I guess I have lived with Crohn's for so long that it is just part of my everyday life now, and I had forgotten how scary it was when I was only 24 yrs and there was no internet, and nothing in the local reference library. Doctors here in England didn't talk much to the patient then, except to tell me it was incurable, even by surgery. Some of the lucky Crohn's patients only have a few episodes and it seems to burn itself out. I guess I am one of the unlucky few, but it is certainly liveable with, as I have proved. I now have a brilliant youngish (mid 40's) gastro who is absolutely passionate about inflammatory bowel disease and the poor quality of life we sometimes have to endure. He is involved in trials of the new anti-TNFa biologic drugs, but I haven't tried them as I am stable on methotrexate, although he said he has never known any Crohn's patient to tolerate this chemotherapy drug for the 7 yrs I have been on it. It has given me my life back, and no flares or rectal haemorrhages requiring hospitalisation. I once told him, if he moves from the South West of England to another hospital, his wife had better look for an apartment for me and my husband! He just laughed, but think he got my gist.

Dieticians - gosh, I must have seen about 15 hospital dieticians over the 37 yrs - initially I was put on a tartrazine free diet, then a lactose free diet and none of them helped with the symptoms. The current thinking, according to my gastro, is that diet (and certainly not any wild supplements) will not bring about remission of symptoms, only appropriate meds will, and I should follow a high protein, low fat, very low fibre diet and just avoid foods like pulses (beans, peas, lentils etc.) and stalky vegetables like cauliflower, broccoli, cabbage etc. I also find any kind of cereal gives me worse diarrhea, so I don't eat them. Usually just a boiled egg and white toast for breakfast.   I take one Triptofen table daily and this slows down the motility in my intestines, and calms the lower abdominal spasms.  Truly, I have never felt so well in years, and am maintaining my weight, although a little low at 110 lbs.

When I was hospitalised in Florida with a rectal haemorrhage (not just blood on the toilet paper, but filled the pan), I got in touch with the Crohn's & Colitis Foundation of America, think they were based in New York. It is a charitable foundation who get millions of dollars from grateful patients and they have a huge research programme. Google them, as they have a good website. They will send you the latest information on medications, surgery etc. They do have local chapters right across the USA, although I wasn't there long enough to attend one. I guess they are similar to the local support groups we have in England, where people with IBD can get together and talk to someone who also has either Crohn's or Ulcerative Colitis.These groups in England do a lot of fund raising activities to help our National Association of Colitis and Crohn's raise not only money for research, but also give out monies to people that need it.  They have a free helpline staffed by people who have or had IBD. Unfortunately my local group meets monthly in Plymouth in a pub in the evenings, and the ferry to the Fort where I live stops at 6.30 pm in winter and 8.30pm summer, and it is about a $100 one way cab drive, so I don't go. I have attended their Christmas afternoon meetings in the past, but the only person I met who was also on her own was a local lady with Ulcerative Colitis so we didn't really have much in common except the same brilliant gastro. My gastro goes to the quarterly meetings, held in a lecture theatre at the hospital and gives an update on current research and meds, and does a question and answer session. I don't know what happens when I am not there, but I am usually the only person with questions!

I feel I can cope with what I know, but not the unknown, so have always tried to be aware of current developments with both Crohn's and breast cancer. Indeed when we first got connected to the internet 7 yrs ago, I found methotrexate myself and had to badger my then gastro for it. It is still not licensed in England for Crohn's as it is too expensive for the drug company to do the appropriate licensing for so few patients, but can be prescribed off licence by a consultant gastro.   I am a generation older than you and find the doctors I now see are willing to answer my questions and explain my "empirical" problems. Perhaps, along with the meds, the fact that my doctors explain things to me, has helped with my general health and positive attitude.

Wait for the pathology report on your recent colonoscopy and endoscopy, and if there is anything you don't understand, do ask your gastro to explain it in words you can understand. When I ask my gastro a question, he answers as if he is talking to a medical student, and I often don't understand the technical terms he uses. My husband, who is far more intelligent than me even though he is 79 yrs old, always comes to the consultations and procedures with me, and he takes in a lot that I don't. I am blessed with such a caring and intelligent guy who has always been there for me - sometimes holding a bucket and a bowl when I have had a flare and couldn't get the 6 steps to the loo.  

Your disease may not progress as mine did - luck of the draw I think - and I hope and pray your symptoms will spontaneously go into remission.

Please get back to me if I can help in any way. You have become a good friend, even if only in cyberspace.

Take care April,

Liz.

[April2]

I forgot to ask you, you said awhile back something about a foundation where you can get more information on Crohns. Can you tell me a little about it again, if you don't mind? Can you also talk to others with Crohns? Or is it just an information kind of thing?
Thanks again!

[April2]

Thanks Lizzie for answering. No, I don't think I need counseling. I'm a pretty strong person too. I've gone through a lot the last two years just within my family and such. I guess I'm still getting used to the diagnosis of Crohns. I was only recently diagnosed, you know, back in August when I had my surgery and even then they were still wondering. I only seemed to have one ulcer so I thought maybe the surgery would put it in remission. I still have a lot to learn, I guess. I'm trying to educate myself on Crohns and where to go from here. I want to talk to my doctor about referring me to a dietician familiar with Crohns who can help set up a good diet for me that won't aggravate it. I've also been wanting to get tested for allergies to see what I should avoid. I know certain foods don't agree with me. I really want to get healthy this year and lose a little weight and excercise more, I owe it to my kids for them to see my trying to be healthy.
Thanks again for answering. I appreciate you being honest with me. I guess we'll just have to wait until I get the pathologist's report back and after I see the Gastro doc and see what he says.
I know you said I need to wrap myself around the idea of having this. I think I have been in denial. Maybe I just needed time to get used to this. I don't know.
Well, I hope that you are doing well. Keep in touch once in awhile. It's good to hear from you. Take care & God bless.

[lizziecee]

Sorry if I seemed to scare you - not my intention at all. I was just trying to answer your queries on deciphering the scopes.
I stand corrected on the anastomosis status - this is due to your recent surgery, but I don't know why it states "erosion". I am sure your doctor can explain this when you see him.

I have never had polyps, but a friend in Florida has polyps removed each year when he has a colonoscopy, and they have never been malignant. The histology report will detail whether the polyp is benign or malignant.

Yes, people with Crohn's do have a higher risk of colon cancer than the general population. My father died of colon cancer at 59 yrs, so I am at double risk my gastro tells me.  It doesn't concern me day to day but has made me aware that I must be tested regularly, since the symptoms of Crohn's can be similar to cancer. I have a colonoscopy every 2-3 yrs, and also an endoscopy whenever my gastro deems is the time. The most important factor is being on long term immuno-suppressants which has kept the disease in remission.

Don't regret for one moment having the scopes. If anything is wrong, it can be brought into remission with appropriate medication. Crohn's does not unfortunately go away with wishful thinking. It is termed a chronic disease, just as asthma and diabetes are and you can have a long and healthy life, as I have done. Some people with Crohn's only get one or 2 flares and the disease spontaneously goes into remission. Mine is what the gastro calls "intractable" and I understand that I will be on medication for life.  That is the price I have to pay to have a reasonable quality of life. April, it could be a lot worse - I only have to look around the Fort where I live, and 3 people are permanently in wheelchairs. Try and be positive, and like me, count your blessings. Being positive will not cure you, but it will make living each day more tolerable.  Anxiety and stress can exacerbate Crohn's symptoms, although not cause it in the first place.

When you see your gastro you might ask why they prescribed nexium, as this is for GERD. Perhaps some of the clinical features in your upper GI tract (such as erosions) were deemed to be caused by excessive acid. I don't know much about GERD, as I have never had that particular problem. Google GERD and you will get a lot of information.

Could you perhaps get some counselling to help you come to terms with your diagnosis? I have never had to resort to counselling, as I seem to get some inner strength from somewhere when I am faced with medical problems. However, people are different in the way they react when faced with an incurable disease.

I will say prayers for you and hope the pathology results are good.

Take care,
Liz.

[April2]

Could the anastomosis be because of my surgery? There's a part that says postsurgical intestinal bypass or anastomosis status.

Now you're starting to scare me. I already got a scare from someone else because I heard they get concerned when a polyp is more than 5 mm and mine was 6 mm. I've heard that there's a higher risk of colon cancer with people who have Crohns. I already have colon cancer in my family. My grandmother had it but she didn't get it until she was in her 70's. I'm only 42!

Do you really think mine is agressive? Why do you think that? I almost wish I hadn't had that stupid test yesterday. I've been actually feeling great since my surgery last August.

Please say a prayer for me, Lizzie. I don't want to get any worse.

[lizziecee]

Hi April - not sure how I can help, but here goes.

Endoscopy shows ulcers, typical of Crohn's, but with no bleeding. Good news. I went some 20 yrs before I had bleeding from my ulcers and crypt abscesses  in the small and large intestine. My Crohn's, started in the small intestine, but there were some 15 different areas of ulceration and thankfully the surgeon decided not to resect, but put me on some horrendous dose of 60 mg daily of prednisone, only drug available then in1970. This has caused serious bone problems, and I have had two fractures in both feet recently. Don't go that route! there are much better drugs available now, like the immuno suppressant drug I self inject weekly, methotrexate.

The endoscopy of your small intestine showed previous inflammation. Crohn's goes right through the whole mucosa of the intestines, unlike Ulcerative Colitis which only goes into the superficial layer.

Colonoscopy - if I read the  report correctly, you may have a stricture of the large intestine - anastomosis. This is caused by previous inflammation also.   Not at all unusual with Crohn's, and you should be aware that you need constant monitoring for this. I have just had an MRI on my abdomen because my gastro found a stricture in my small bowel through endoscopy, but on MRI I now have two strictures and am awaiting the radiologist's report before considering surgery.

Crohn's does present in different ways... unfortunately, yours seems to be quite aggressive and I would ask many questions of your gastro. How bad is the stricture, does it need surgery?What does he suggest to keep Crohn's in remission?

However, as far as I am concerned, the only drug that has kept me in remission in the last 7 years (and I have had Crohn's for 37 yrs now) is methotrexate. Don't let your dr's prescribe infliximab - it is horrendously expensive and doesn't work for long and has many serious life threatening side effecs.

As for the drugs your doctor has prescribed - I am horrified. Flagyl I tried twice, made me vomit and felt I wanted to die. Entecort I tried when it was first available in England - only works on the small intestine and I found it useless.

With your Pan Crohn's Colitis (as I have) you really need an immuno-suppressant for long term. suppresion.   April - Crohn's is not curable, but treatable, and once you get your head around that scenario, you will, believe me, start to get your life back and feel so much better.

Take care dear friend, if I can help any further, get back to me. I have been done there, and have survived with a great positive attitude, as well as breast cancer, so if I can do it, so can you! I can still wake up each morning with a smile on my face, glad to be alive and not in pain or bleeding.
Love from Liz.