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Lizziecee
Hey Lizziecee, I thought I'd write to you over here since the Gastro forum gets awfully full.
Do you remember me and my story?
To make a long story short, through a Cat Scan three years ago, they saw a mass in my small intestine (The Terminal Illeum). We kept an eye on it and it did grow some and caused some restriction so they did surgery this last August. They biopsied it and said it was a fibrous scar tissue with ulceration nearby indicating a high probability of Crohn's Disease. I have recovered nicely and don't have the stomach pains anymore that I had before the surgery.
My surgeon referred me out to a Gastroenterologist. He ordered a blood test that came back negative for Crohns, Celiac, and Ulcerative Colitis. I thought this was good news! Then I saw him again today and he said I could still have Crohns?! I don't understand. Now we still don't know. He said the blood test is about 80% accurate but the fact that when they biopsied the mass they said it was a high probability for Crohns that we still have to watch it. I'm so frustrated. He did an Upper GI and said my duodenum is irritated or thickened and so he want to do an Upper Endoscopy. He also wants to do another Colonoscopy. I don't want to have another one! I had one done three years ago and other than the one mass, my colon was fine. I'm so tired of all the poking and prodding and testing. Do you really think it's necessary for me to get another Colonoscopy when I have no symptoms right now? He said he just wants to keep an eye on things.
Also, he's ordering more blood work. My last blood work came back abnormal back in August before I had the surgery. I guess my electrolytes were off, I was anemic and dehydrated. They didn't tell me all this at that time! He thinks it was because I was sick so hopefully this next blood work will come back normal. Could that be why I've been so tired? I don't mind doing the blood work and all, I just really don't want to have to have another Colonoscopy. What do you think about all of this? I didn't make the appointment yet. I told him I'd like to wait until after the holidays.
You are so knowledgeable about Crohns and such. I'd really like your thoughts on all of this. Thanks!
Do you remember me and my story?
To make a long story short, through a Cat Scan three years ago, they saw a mass in my small intestine (The Terminal Illeum). We kept an eye on it and it did grow some and caused some restriction so they did surgery this last August. They biopsied it and said it was a fibrous scar tissue with ulceration nearby indicating a high probability of Crohn's Disease. I have recovered nicely and don't have the stomach pains anymore that I had before the surgery.
My surgeon referred me out to a Gastroenterologist. He ordered a blood test that came back negative for Crohns, Celiac, and Ulcerative Colitis. I thought this was good news! Then I saw him again today and he said I could still have Crohns?! I don't understand. Now we still don't know. He said the blood test is about 80% accurate but the fact that when they biopsied the mass they said it was a high probability for Crohns that we still have to watch it. I'm so frustrated. He did an Upper GI and said my duodenum is irritated or thickened and so he want to do an Upper Endoscopy. He also wants to do another Colonoscopy. I don't want to have another one! I had one done three years ago and other than the one mass, my colon was fine. I'm so tired of all the poking and prodding and testing. Do you really think it's necessary for me to get another Colonoscopy when I have no symptoms right now? He said he just wants to keep an eye on things.
Also, he's ordering more blood work. My last blood work came back abnormal back in August before I had the surgery. I guess my electrolytes were off, I was anemic and dehydrated. They didn't tell me all this at that time! He thinks it was because I was sick so hopefully this next blood work will come back normal. Could that be why I've been so tired? I don't mind doing the blood work and all, I just really don't want to have to have another Colonoscopy. What do you think about all of this? I didn't make the appointment yet. I told him I'd like to wait until after the holidays.
You are so knowledgeable about Crohns and such. I'd really like your thoughts on all of this. Thanks!
Thanks, Lizziecee! That glass of wine sounds good! Lol!
You've been very helpful and I so appreciate it! I hope that you're doing ok too.
Keep in touch!
Hugs and prayers!
Your friend,
April
You've been very helpful and I so appreciate it! I hope that you're doing ok too.
Keep in touch!
Hugs and prayers!
Your friend,
April
Hi April - my heart indeed aches for you, as you don't seem to be getting the answers you deserve from your doctors. Just wish we could sit down together over a glass of wine, give you a big hug and talk things through, but as I can't yet walk on water over the Atlantic ocean, the internet will have to suffice.
Okay - eyes - I had no wish to alarm or scare you, just trying to let you know that Crohn's can affect people differently, and eye problems can definitely be caused by Crohn's. When I was first diagnosed in 1970 I woke up from the laparotomy in a private room and thought the windows were frosted glass as I could not see through them. When I was discharged some 6 weeks later I went to see an optician and my long sight had seriously deteriorated. I have worn spectacles since then. In my early forties my near sight got bad and I found it difficult to read so got graduated lenses,(Varilux in England) which I have worn for some 25 yrs now. They are the first thing I put on upon rising and last thing I take off at night. I don't know if the deterioration in my sight is due to Crohn's inflammation in the eyes, or the steroids. I have never discussed this with any gastro I have had - and I have had many, some bad, some good, but got a brilliant one now. It has never seemed important enough, with other things going on. If you google Crohn's, you will find that eyes can be affected by Crohn's. The Mayo clinic site is about the best to go to for up to date information. Very occasionally an optician or optometrist will find something awry in my eyes and send me off for protein tests of my urine, or arteriosclerosis, which are positive, but nothing seems to be done. I have just learned to live with my sight problems and make sure I get an annual eye test, which are thankfully free now on our Nationalised Health Service, as I am over 60 yrs old and pensionable. Yikes - I still feel like 25 yrs in my mind! If you can get the prescription from your optician/optometrist, you can get on the net and find suppliers who will make graduated lenses for you at a fraction of the cost from local practitioners - you just send them the prescription.
Endoscopy - I well remember the first one I had done in London at a large teaching hospital, some 25 yrs ago when I was not sedated. It was horrendous - I was gagging, mucous was coming out of my nose and mouth and I thought I was going to choke and die. I had a young Registrar, Indian, if I remember correctly, and he was so patient in getting the scope down my throat to my intestines. Endoscopy was in the experimental stages then, and now it is duck soup. My gastro gives me an injection of some kind in my hand (I have never thought to ask what) and within 5 seconds I am oblivious, only waking up in the recovery room with a cup of tea and a cookie. There is no prep to do like you must do for colonoscopy, which for me, is absolute torture. The colonoscopy is like the endoscopy - a quick injection and you are in never never land. Believe me, it is the only way to properly look at the intestines. I have had the occasional barium follow through of my small intestines, but I am not sure why this is done compared to endoscopy. Must ask my brilliant gastro next time I see him - after the MRI results are back. Jeez, I have just remembered how awful the barium enema was before colonoscopy - you wouldn't wish it on your worst enemy!
I am sorry that I don't know what caused the thickening in your duodenum......my gastro said that my stricture (thickening) in my small intestine is due to either current inflammation or adhesions from past inflammatory episodes, which is why he wants to do the MRI. If it is a current inflammatory condition, then that is good news, because it means no surgery, but if, as he suspects, adhesions, then surgery is the only answer. I am quite calm about the situation, having lived with Crohn's for so long - often surprised I am still here and enjoying life, which is rather restricted, but hey, it's a life!
April - your gastro cannot tell you what is causing your problems unless he is able to do the tests to diagnose it correctly. You really must have an endoscopy and colonoscopy to find out what is wrong...and then, you can get appropriate medication to treat it and keep the problem in remission. I haven't had H.pylori, that I know of, and never been tested for it, as my Crohn's has long been definitely diagnosed with biopsies a number of times. I think there is a blood test for H.Pylori these days. A great gastro I had at the world renowned Hammersmith Hospital in London, was part of the team that identified H.Pylori as being the cause of stomach ulcers, and not stress. I guess I have been fortunate in having had some good gastros all these years, and not had to have surgery yet.
I do believe it is now inevitable, and I can live with that. I don't have stomach ulcers, but ulcers and crypt abscesses in both intestines, which is quite different.
When your gastro talked to you about possible acid reflux, did he mention Barrett's Esophagus?
This is a pre-cancerous condition where acid has eaten away some of the lining of the stomach - not the intestines.I believe it starts with GERD syndrome. It should be relatively easy to check it out, and only needs antibiotics to resolve. It has absolutely nothing to do with Crohn's disease, but does need treating.
Think I have exhausted my knowledge of Crohn's, but if you have further questions, I am always happy to try and help out. I do know how isolating this disease is, as no-one wants to hear of gastro problems, it is like having the bubonic plague, and the last taboo medically. Everyone can talk about AIDs and cancer these days but not about bowel problems. I just smile sweetly these days and say: " I am doing well". Like my breast cancer forums, there is no-one who can really understand what you are going through until you have had the disease yourself, and at times, friends/relatives can make the most insensitive of remarks. I never had broad shoulders, but have learned metaphorically to have them. The mind can be incredible at times in overcoming some seemingly insurmountable problems. I hate for friends to say "You are so positive Liz"...when deep down I am worried about my cancer and Crohn's. What other way is there to be?
Okay - off my soap box - my entreaty to you is to go and have the endoscopy and colonoscopy and get your problems clinically diagnosed. You will be so relieved mentally and physically, and can then get proper treatment.
Much love,
Liz.
Okay - eyes - I had no wish to alarm or scare you, just trying to let you know that Crohn's can affect people differently, and eye problems can definitely be caused by Crohn's. When I was first diagnosed in 1970 I woke up from the laparotomy in a private room and thought the windows were frosted glass as I could not see through them. When I was discharged some 6 weeks later I went to see an optician and my long sight had seriously deteriorated. I have worn spectacles since then. In my early forties my near sight got bad and I found it difficult to read so got graduated lenses,(Varilux in England) which I have worn for some 25 yrs now. They are the first thing I put on upon rising and last thing I take off at night. I don't know if the deterioration in my sight is due to Crohn's inflammation in the eyes, or the steroids. I have never discussed this with any gastro I have had - and I have had many, some bad, some good, but got a brilliant one now. It has never seemed important enough, with other things going on. If you google Crohn's, you will find that eyes can be affected by Crohn's. The Mayo clinic site is about the best to go to for up to date information. Very occasionally an optician or optometrist will find something awry in my eyes and send me off for protein tests of my urine, or arteriosclerosis, which are positive, but nothing seems to be done. I have just learned to live with my sight problems and make sure I get an annual eye test, which are thankfully free now on our Nationalised Health Service, as I am over 60 yrs old and pensionable. Yikes - I still feel like 25 yrs in my mind! If you can get the prescription from your optician/optometrist, you can get on the net and find suppliers who will make graduated lenses for you at a fraction of the cost from local practitioners - you just send them the prescription.
Endoscopy - I well remember the first one I had done in London at a large teaching hospital, some 25 yrs ago when I was not sedated. It was horrendous - I was gagging, mucous was coming out of my nose and mouth and I thought I was going to choke and die. I had a young Registrar, Indian, if I remember correctly, and he was so patient in getting the scope down my throat to my intestines. Endoscopy was in the experimental stages then, and now it is duck soup. My gastro gives me an injection of some kind in my hand (I have never thought to ask what) and within 5 seconds I am oblivious, only waking up in the recovery room with a cup of tea and a cookie. There is no prep to do like you must do for colonoscopy, which for me, is absolute torture. The colonoscopy is like the endoscopy - a quick injection and you are in never never land. Believe me, it is the only way to properly look at the intestines. I have had the occasional barium follow through of my small intestines, but I am not sure why this is done compared to endoscopy. Must ask my brilliant gastro next time I see him - after the MRI results are back. Jeez, I have just remembered how awful the barium enema was before colonoscopy - you wouldn't wish it on your worst enemy!
I am sorry that I don't know what caused the thickening in your duodenum......my gastro said that my stricture (thickening) in my small intestine is due to either current inflammation or adhesions from past inflammatory episodes, which is why he wants to do the MRI. If it is a current inflammatory condition, then that is good news, because it means no surgery, but if, as he suspects, adhesions, then surgery is the only answer. I am quite calm about the situation, having lived with Crohn's for so long - often surprised I am still here and enjoying life, which is rather restricted, but hey, it's a life!
April - your gastro cannot tell you what is causing your problems unless he is able to do the tests to diagnose it correctly. You really must have an endoscopy and colonoscopy to find out what is wrong...and then, you can get appropriate medication to treat it and keep the problem in remission. I haven't had H.pylori, that I know of, and never been tested for it, as my Crohn's has long been definitely diagnosed with biopsies a number of times. I think there is a blood test for H.Pylori these days. A great gastro I had at the world renowned Hammersmith Hospital in London, was part of the team that identified H.Pylori as being the cause of stomach ulcers, and not stress. I guess I have been fortunate in having had some good gastros all these years, and not had to have surgery yet.
I do believe it is now inevitable, and I can live with that. I don't have stomach ulcers, but ulcers and crypt abscesses in both intestines, which is quite different.
When your gastro talked to you about possible acid reflux, did he mention Barrett's Esophagus?
This is a pre-cancerous condition where acid has eaten away some of the lining of the stomach - not the intestines.I believe it starts with GERD syndrome. It should be relatively easy to check it out, and only needs antibiotics to resolve. It has absolutely nothing to do with Crohn's disease, but does need treating.
Think I have exhausted my knowledge of Crohn's, but if you have further questions, I am always happy to try and help out. I do know how isolating this disease is, as no-one wants to hear of gastro problems, it is like having the bubonic plague, and the last taboo medically. Everyone can talk about AIDs and cancer these days but not about bowel problems. I just smile sweetly these days and say: " I am doing well". Like my breast cancer forums, there is no-one who can really understand what you are going through until you have had the disease yourself, and at times, friends/relatives can make the most insensitive of remarks. I never had broad shoulders, but have learned metaphorically to have them. The mind can be incredible at times in overcoming some seemingly insurmountable problems. I hate for friends to say "You are so positive Liz"...when deep down I am worried about my cancer and Crohn's. What other way is there to be?
Okay - off my soap box - my entreaty to you is to go and have the endoscopy and colonoscopy and get your problems clinically diagnosed. You will be so relieved mentally and physically, and can then get proper treatment.
Much love,
Liz.
Thanks, Lizziecee! You were very helpful. I will ask about the stool test and the blood test for B12. I wish now I'd have got that done yesterday when I did the other blood tests. Oh well.
Can I ask you another question? What do you mean it can affect your eyes? You're starting to scare me now. This last month for the first time in my life I started seeing a little blurry. It wasn't too bad. At first I thought I was just tired (since I'm tired a lot!), but when I was having trouble reading, that concerned me. I went and got my eyes checked and it has changed a little since I was last in. It's enough that I could benefit from at least some reading glasses. He tried to talk me into the progressive glasses so I could wear them when I drive too and help with the computer reading, etc., but I just can't afford that right now. It's really not too bad at this point, just a little blurry. Like I can see what I'm typing here but it's a little blurry. Is that just a sign of getting older or could it have anything to do with the Crohns?
Also, what do you think could have caused the irritation or thickening in the duodenum? He said it could be acid, not acid reflux that goes up the esophegus, it was something else going down. I forgot exactly what he called it. He said it could be acid, or irritation or scarring from H.Pylori or Crohns. He's not sure. That's why he wants to do the upper endoscopy.
Did you say you had one done? How was that? I guess they'd have to sedate you pretty well since they're sticking a tube down your throat, since your first reaction would be to gag. I don't want to know what they're doing! I'm afraid I'd panic if I had something stuck down my throat! He's saying he can do the endoscopy and colonoscopy the same day since they only take about 15-20 minutes each unless they find something.
Sorry I have so many questions! You've just been so helpful, I really appreciate it! Thanks so much! I hope you are doing well too? God bless!
Can I ask you another question? What do you mean it can affect your eyes? You're starting to scare me now. This last month for the first time in my life I started seeing a little blurry. It wasn't too bad. At first I thought I was just tired (since I'm tired a lot!), but when I was having trouble reading, that concerned me. I went and got my eyes checked and it has changed a little since I was last in. It's enough that I could benefit from at least some reading glasses. He tried to talk me into the progressive glasses so I could wear them when I drive too and help with the computer reading, etc., but I just can't afford that right now. It's really not too bad at this point, just a little blurry. Like I can see what I'm typing here but it's a little blurry. Is that just a sign of getting older or could it have anything to do with the Crohns?
Also, what do you think could have caused the irritation or thickening in the duodenum? He said it could be acid, not acid reflux that goes up the esophegus, it was something else going down. I forgot exactly what he called it. He said it could be acid, or irritation or scarring from H.Pylori or Crohns. He's not sure. That's why he wants to do the upper endoscopy.
Did you say you had one done? How was that? I guess they'd have to sedate you pretty well since they're sticking a tube down your throat, since your first reaction would be to gag. I don't want to know what they're doing! I'm afraid I'd panic if I had something stuck down my throat! He's saying he can do the endoscopy and colonoscopy the same day since they only take about 15-20 minutes each unless they find something.
Sorry I have so many questions! You've just been so helpful, I really appreciate it! Thanks so much! I hope you are doing well too? God bless!
Hi April - yes, I do remember you from the gastroenterology forum.
I don't understand how a blood test can rule Crohn's either in or out. An elevated ESR can show a level of inflammation, but I don't know what other blood tests can be done. My gastro doesn't do the ESR test any more, as it is rather dated and the scope procedures are much more accurate. As far as I am aware, that only way to diagnose Crohn's is with an endoscopy and biopsy of the small intestine and/or a colonoscopy and biopsy of the large intestine. Only with the gastro looking at the internal mucosal lining of the intestines, and biopsying suspicious tissue can they really be sure. I have also learned recently that you can have both Crohn's and Ulcerative Colitis. UC only affects the large intestine whereas Crohn's can present anywhere in the GI tract, from mouth to anus, and sometimes in rare cases, can affect the eyes. A calprotectin stool assay test should also be done. If the level of calprotectin is out of range (20 is the norm) this is indicative of inflammation in the GI tract, but not specifically where. My last one was 80, and this is why my gastro is concerned and wants to do the MRI. The stool assay test is not invasive and cheap to do compared to scopes. I don't know if this test can be done in the US as it was developed by doctors in Nottingham, England, but you could ask your gastro whether he knows about it. If you google "calprotectin assay stool test", you will find technical information.
I don't really understand why they can't give you a definitive diagnosis, having biopsied the mass.
Perhaps your gastro can explain this to you (and me!).
I have a colonoscopy every 2-3 years as there is a high risk of Crohn's turning to cancer of the bowel, and as my father died of colon cancer at 59 yrs, that is another high risk factor. I had an endoscopy a few months ago, just because I hadn't had one for years, and my gastro wanted to take a look at the small bowel. He found a stricture, which I didn't know I had and I am having an MRI of the pelvis next Friday 16th Nov to determine the extent and whether surgical resection should be done. I have never had a resection in the 37 yrs I have had Crohn's, so am lucky in that respect.
I would definitely go along with your gastro's advice for an endoscopy and colonoscopy. I am sure he would not advise these tests unless they are warranted.
If you do have inflammation in your small intestine, this can cause malabsorption, then malnutrition, hence why you feel so tired. I also feel very tired and have to pace myself during the day - often go to bed at 7 pm after supper, and can sleep 12-14 hours. I sometimes also have a 1-2 hr nap in the afternoon too. Being retired, this isn't a problem, but can be for a younger person that has to work.
Has the gastro prescribed any medication for the anaemia and low electrolytes? When I get severe diarrhea I buy packets of electrolytes at the pharmacy - it is a powder you dissolve in water, tastes okay. If you are anaemic, you also need iron tablets. There is another potential problem with Crohn's and that is the inability to absorb the vitamin B12, which is only metabolised in the terminal ileum. I seem to remember your mass was located around the terminal ileum, and if this is scarred, you will not be able to absorb B12. Low B12 can also cause extreme tiredness. I have my bloods checked every month at my local GP's office, and at the same time the nurse gives me a shot of B12. I guess I have been having B12 shots for well over 20 years.
I hope I have answered your very valid questions, but I am not a gastro, just a Crohnie with years of experience. I am still learning, every time I see my gastro, who is very good at explaining matters, but sometimes blinds me with tecnicalities that I don't understand. My husband says I shouldn't ask technical questions if I can't understand the answers!
Let me know if I can help you further.
Take care,
Liz.
I don't understand how a blood test can rule Crohn's either in or out. An elevated ESR can show a level of inflammation, but I don't know what other blood tests can be done. My gastro doesn't do the ESR test any more, as it is rather dated and the scope procedures are much more accurate. As far as I am aware, that only way to diagnose Crohn's is with an endoscopy and biopsy of the small intestine and/or a colonoscopy and biopsy of the large intestine. Only with the gastro looking at the internal mucosal lining of the intestines, and biopsying suspicious tissue can they really be sure. I have also learned recently that you can have both Crohn's and Ulcerative Colitis. UC only affects the large intestine whereas Crohn's can present anywhere in the GI tract, from mouth to anus, and sometimes in rare cases, can affect the eyes. A calprotectin stool assay test should also be done. If the level of calprotectin is out of range (20 is the norm) this is indicative of inflammation in the GI tract, but not specifically where. My last one was 80, and this is why my gastro is concerned and wants to do the MRI. The stool assay test is not invasive and cheap to do compared to scopes. I don't know if this test can be done in the US as it was developed by doctors in Nottingham, England, but you could ask your gastro whether he knows about it. If you google "calprotectin assay stool test", you will find technical information.
I don't really understand why they can't give you a definitive diagnosis, having biopsied the mass.
Perhaps your gastro can explain this to you (and me!).
I have a colonoscopy every 2-3 years as there is a high risk of Crohn's turning to cancer of the bowel, and as my father died of colon cancer at 59 yrs, that is another high risk factor. I had an endoscopy a few months ago, just because I hadn't had one for years, and my gastro wanted to take a look at the small bowel. He found a stricture, which I didn't know I had and I am having an MRI of the pelvis next Friday 16th Nov to determine the extent and whether surgical resection should be done. I have never had a resection in the 37 yrs I have had Crohn's, so am lucky in that respect.
I would definitely go along with your gastro's advice for an endoscopy and colonoscopy. I am sure he would not advise these tests unless they are warranted.
If you do have inflammation in your small intestine, this can cause malabsorption, then malnutrition, hence why you feel so tired. I also feel very tired and have to pace myself during the day - often go to bed at 7 pm after supper, and can sleep 12-14 hours. I sometimes also have a 1-2 hr nap in the afternoon too. Being retired, this isn't a problem, but can be for a younger person that has to work.
Has the gastro prescribed any medication for the anaemia and low electrolytes? When I get severe diarrhea I buy packets of electrolytes at the pharmacy - it is a powder you dissolve in water, tastes okay. If you are anaemic, you also need iron tablets. There is another potential problem with Crohn's and that is the inability to absorb the vitamin B12, which is only metabolised in the terminal ileum. I seem to remember your mass was located around the terminal ileum, and if this is scarred, you will not be able to absorb B12. Low B12 can also cause extreme tiredness. I have my bloods checked every month at my local GP's office, and at the same time the nurse gives me a shot of B12. I guess I have been having B12 shots for well over 20 years.
I hope I have answered your very valid questions, but I am not a gastro, just a Crohnie with years of experience. I am still learning, every time I see my gastro, who is very good at explaining matters, but sometimes blinds me with tecnicalities that I don't understand. My husband says I shouldn't ask technical questions if I can't understand the answers!
Let me know if I can help you further.
Take care,
Liz.
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