Aa
Anyone here with Crohn's who can give advice?
Hello. Three years ago a mass was discovered in my small intestine (the Terminal Ilium). We kept an eye on it for a year and it didn't grow. The last 4 or 5 months I had been having stomach pains. At first they said I had H.Pylori and gave me antibiotics. The pains came back so they took another Cat Scan and discovered this mass had grown a bit and was pressing on the wall of the small intestine. Even though there was no blockage yet, it was somewhat contricted in that area and things were slowed so they felt it was best to take this out and biopsy it and see what it was.
I had the surgery last Tuesday. They biopsied the mass and said it was fibrous scar tissue with ulceration nearby indicating a near classic case of Crohn's Disease. My surgeon was surprised. He didn't think I showed enough symptoms of Crohns. I did have some loose bowel movements for months with stomach pains off and on. Maybe this is a mild case, I don't know. He wants to send me to a Gastroenterologist in a few weeks when I'm healed enough from the surgery.
I've tried looking up Crohn's on the Internet since I knew nothing about it. What scared me was it said it's for life and those who have surgery a lot of times have to have it again within five years. I really hope that doesn't happen. I've had a lot more pain and nausea from this surgery than I expected, so the idea of having surgery again fills me with dread and fear. I also read that Crohns can increase your chance of colon cancer. I already had a grandmother who had colon cancer, so I already have that in my family.
I can't understand how this happened. I read it can be hereditary but I have no one else in my family with this. I thought it was interesting that I read stress can't bring this about, because I've had the most stressful, horrible year this last year and that's when I started having health issues. I understand this is for life. I've been a little scared and depressed since reading up on this. Can anyone give me some advice? Someone who has Crohn's Disease and is more knowledgeable than I am? Will a change in diet help? Will I have to take medication? Am I always going to have this abdominal pain off and on for the rest of my life? Please, if there's anyone else out there who has Crohns, I'd really like to talk to you. I feel so alone right now. No one in my family understands any of this either. Is it even possible pathology could have misdiagnosed me? I did read that Crohns usually shows up in the small intestine or the terminal illium (where the small intestine hooks up to the large intestine) and that's exactly where mine was. What is the possiblity that I have Celiac too? I have a friend who has Celiac and said I should ask to be tested for that too since it's so simular to Crohns. See, I have so many questions!! Please, if there's anyone out there who is in the same boat as me, I'd love to talk to you. Maybe I won't feel so alone and scared if I had someone else to talk to who's in my same situation. Thank you so much.
I had the surgery last Tuesday. They biopsied the mass and said it was fibrous scar tissue with ulceration nearby indicating a near classic case of Crohn's Disease. My surgeon was surprised. He didn't think I showed enough symptoms of Crohns. I did have some loose bowel movements for months with stomach pains off and on. Maybe this is a mild case, I don't know. He wants to send me to a Gastroenterologist in a few weeks when I'm healed enough from the surgery.
I've tried looking up Crohn's on the Internet since I knew nothing about it. What scared me was it said it's for life and those who have surgery a lot of times have to have it again within five years. I really hope that doesn't happen. I've had a lot more pain and nausea from this surgery than I expected, so the idea of having surgery again fills me with dread and fear. I also read that Crohns can increase your chance of colon cancer. I already had a grandmother who had colon cancer, so I already have that in my family.
I can't understand how this happened. I read it can be hereditary but I have no one else in my family with this. I thought it was interesting that I read stress can't bring this about, because I've had the most stressful, horrible year this last year and that's when I started having health issues. I understand this is for life. I've been a little scared and depressed since reading up on this. Can anyone give me some advice? Someone who has Crohn's Disease and is more knowledgeable than I am? Will a change in diet help? Will I have to take medication? Am I always going to have this abdominal pain off and on for the rest of my life? Please, if there's anyone else out there who has Crohns, I'd really like to talk to you. I feel so alone right now. No one in my family understands any of this either. Is it even possible pathology could have misdiagnosed me? I did read that Crohns usually shows up in the small intestine or the terminal illium (where the small intestine hooks up to the large intestine) and that's exactly where mine was. What is the possiblity that I have Celiac too? I have a friend who has Celiac and said I should ask to be tested for that too since it's so simular to Crohns. See, I have so many questions!! Please, if there's anyone out there who is in the same boat as me, I'd love to talk to you. Maybe I won't feel so alone and scared if I had someone else to talk to who's in my same situation. Thank you so much.
Hi Lizziecee, are you still out there? I hadn't talked to you in awhile. I still haven't had my appointment with the gastro yet. It's in a couple of weeks. My surgeon is still waiting for the second pathology report to come back. He isn't even sure I need to see a gastro at this point because he doesn't think I have enough symptoms.
My question is, I've been havind diarehea now for a few weeks. I forgot to mention that to my surgeon. I'm wondering if I have some kind of food intolerence or if it's parasites or the Crohns or what. The week or two after the surgery I was on a bland, partial liqued diet. After that I started adding back in normal food and have been eating normally for this last month. I really can't tell if it's a certain food because I'm having the diarehea every day. Do you think I should get checked out? And by whom, my Family Practice doctor or wait until I have my appointment with the Gastro doc? Thanks, just wondering. Hope to hear from you soon.
My question is, I've been havind diarehea now for a few weeks. I forgot to mention that to my surgeon. I'm wondering if I have some kind of food intolerence or if it's parasites or the Crohns or what. The week or two after the surgery I was on a bland, partial liqued diet. After that I started adding back in normal food and have been eating normally for this last month. I really can't tell if it's a certain food because I'm having the diarehea every day. Do you think I should get checked out? And by whom, my Family Practice doctor or wait until I have my appointment with the Gastro doc? Thanks, just wondering. Hope to hear from you soon.
Hey, thanks for your input! :) I'm hoping I have a mild case of Crohns since they only saw one fibrous scar tissue with ulceration in my small intesting (terminal illeum).
I have a friend who has Celiac and suggested I get tested for that too. When I mentioned it to my surgeon, he just kind of smiled at me and said "Do you really want to go through more testing?" I thought that was kind of condescending. I'm not a hypochondraic! I have had some health issues this last year that I at first contributed to stress. I was under extreme stress this last year. I first noticed I was getting heart palpitations. After getting that checked, they did say that I have an extra heartbeart called Pre-Ventricular Contractions. After making sure my heart was ok, I didn't pursue tht one anymore. I attributed it all to the stress I was under. Then in April I began to have stomach pains, again attributing it to the anxiety and stress I was under. Finally, I went in and they said I had the H.Pylori and gave me antibiotics. It seemed to work for awhile and then the stomach pains came back. That's when they saw this mass in my small intestine had grown and was narrowing that area and recommended it be taken out and biopsied. Now that I look back at it, I think I was rushed into surgery too fast and maybe I could have waited and got some more testing done, but they didn't know what it was and told me it could be cancerous and it should come out. I never did feel like it was cancer, I just didn't know what it was. I'm still not sure if the stomach pains were associated with this mass in my small intestine or the H.Pylori returned. They told me once positive for H.Pylori, always positive. I thought that was kind of strange. How would I know if it came back then? And since the H.Pylori can cause ulceration in the stomach lining and I had an ulcer in my small intestine, I wondered if there could be any connection. The surgeon said no, but it does seem strange. Oh well, I hopefully will find out more when I see the Gastroenterologist. Thanks again for writing!
I have a friend who has Celiac and suggested I get tested for that too. When I mentioned it to my surgeon, he just kind of smiled at me and said "Do you really want to go through more testing?" I thought that was kind of condescending. I'm not a hypochondraic! I have had some health issues this last year that I at first contributed to stress. I was under extreme stress this last year. I first noticed I was getting heart palpitations. After getting that checked, they did say that I have an extra heartbeart called Pre-Ventricular Contractions. After making sure my heart was ok, I didn't pursue tht one anymore. I attributed it all to the stress I was under. Then in April I began to have stomach pains, again attributing it to the anxiety and stress I was under. Finally, I went in and they said I had the H.Pylori and gave me antibiotics. It seemed to work for awhile and then the stomach pains came back. That's when they saw this mass in my small intestine had grown and was narrowing that area and recommended it be taken out and biopsied. Now that I look back at it, I think I was rushed into surgery too fast and maybe I could have waited and got some more testing done, but they didn't know what it was and told me it could be cancerous and it should come out. I never did feel like it was cancer, I just didn't know what it was. I'm still not sure if the stomach pains were associated with this mass in my small intestine or the H.Pylori returned. They told me once positive for H.Pylori, always positive. I thought that was kind of strange. How would I know if it came back then? And since the H.Pylori can cause ulceration in the stomach lining and I had an ulcer in my small intestine, I wondered if there could be any connection. The surgeon said no, but it does seem strange. Oh well, I hopefully will find out more when I see the Gastroenterologist. Thanks again for writing!
I've had Crohn's and Celiac for 4 years now. I have only met one person online once who had both so it is rare, though statistically more so because Celiac is grossly under diagnosed. There is a blood test you can do to check for Celiac disease as well as doing an endoscopy. Celiac actually is an auto-immune disease just like Crohn's. The mutiation is on different chromosomes though. With Celiac, your immune system attacks the ville of your small intestine when you ingest gluten. So, if you think you might have it, you could also try going gluten-free for a few weeks to see if you notice any improvement. There is so much more I could say because I understand everything you are going through. I actually had Cohn's on my gall bladder (very rare) and had to have it removed in January. Try starting out on a low fiber diet. (Low residue as they call it in the hospital.) Think bland foods for a while. "Would this be gentle on my body?"
Best of luck. If you have any more questions let me know! Sorry I can't respond to more right now!
Best of luck. If you have any more questions let me know! Sorry I can't respond to more right now!
Hello sweetie - oh, how my heart aches for you. Not sure if I know enough to help you, but here goes.....
I have never had an "ulcer or crypt abscess" removed. When I have had a flare, the inflammation that causes the ulcers and abscesses (which burst with terrible bleeding from the anus) has always been treated with IV steroids (prednisone). However, I notice from your information that you had a stricture and this was most probably the reason for the surgery, which also removed the ulcer in the strictured part of the terminal ileum. It is only this year that I was diagnosed with a stricture, but it is not causing any problems, and I have been told on many occasions by different gastros, in the UK and USA,, once the surgeons start removing parts of the intestine, the diarrhea can get much worse.
It is theoretically possible that this attack of pain could have been a mild case of Crohn's, as you had no weight loss or severe diarrhea - which were the only symptoms I presented with 37 yrs ago. It did take 5 hospitals and 9 months to get a diagnosis, as Crohn's wasn't heard of much then, and colonoscopy not available in the UK. If I remember correctly, after being tested negative for Coeliac, my gastro did some weird tests, Schilling, B12 absorption etc. After being in the hospital for 3 weeks I suddenly got a nagging pain in the area where the appendix is (the terminal ileum sits right next to the appendix), needed a blood transfusion, and then they did a laparotomy to see what the problem was. They found 15 different segments very inflamed and biopsied the tissue. This is how I was eventually diagnosed with Crohn's. I was put on 60 mg of prednisone a day and doubled my weight in 6 weeks - appetite like a horse.
I am frantically trying to think what else drew them to this conclusion before surgery: my white cell count was very high, which happens with severe inflammation. However, in the last 2-3 yrs there is a new test for digestive inflammation, called Calprotectin. This is not invasive, all you have to do is give a stool test. I had this recently as my previous test 4 months ago showed a higher level of calprotectin than normal.
The test will not show WHERE the inflammation in the digestive tract is, but this gives the gastro the information he needs to do invasive testing, such as endoscopy of the small intestine, and colonoscopy for the large intestine.
As for the Crohn's coming back, I am afraid even a gastro can't give you the stats on that. Crohn's is never cured, just goes into remission. You may, I hope, be one of the lucky ones, who gets a couple of flares and it does not impact too much on your life. In my case, I went down to 70 lbs and had serious malnutrition. I never had bleeding until we went to live in Spain in 1985, but have had a number of episodes since then, one in America where I nearly died.
I would certainly see a gastro - a surgeon is really not qualified to monitor your condition. Do you have a copy of the surgeon's report post-op? The gastro will need to see this, then he can take it from there. He will ask you about your symptoms, and then it is up to him. I somehow doubt that a gastro will prescribe steroids at present, as your symptoms are mild. I take one 5mg tablet of codeine phosphate in the morning, along with my other 4 drugs, which does ease the cramps. One thing I have learned over the years is that steroids do not keep the disease in remission although they do calm a flare down.However, steroids do cause significant bone loss, and after a DEXA bone density scan in February I have been put on weekly Alendronic Acid with Calcichew/VitD3 to build up my bones. I have had two metatarsal fractures in both feet in the last 3 months, which is due to long term steroids. I don't take them anymore on my gastro's advice.
I now self inject 15 mg of methotrexate, which is an immuno-suppressant, once weekly and am doing fairly well on it. Just diarrhea on rising. However,bone marrow is causing current concern as my red cells are out of range (low haemoglobin, high mean corpuscular volume, high mean haemoglobin), which means my red blood cells are grossly enlarged as they come out of the bone marrow, so I have extended the 7 day injection to 8 days to see if this will help. My gastro says there is nothing else he can prescribe and I have to choose between quality or quantity of life. The side effects of methotrexate (which is a cytotoxic drug) are pretty serious, but I don't feel I have any alternative at present. Help is on the horizon though, as gastros in the US and continental Europe are doing leukapharesis of the blood (similar to kidney dialysis), putting it in a centrifuge and extracting the part that causes the immune system to go out of control), but this is not being done in England at present. There was an interesting article in my last Crohn's Assocn newsletter to the effect that stem cell transplants given to leukemia patients had, quite by accident, their Crohn's cured. Now that is like winning the lottery! The results of this treatment were encouraging though risks were substantial . A Europe-wide trial is about to begin on this area. The Professor involved in stem cell transplants emphasised that they were a radical and dangerous solution in general and only really to be considered if all other treatments have failed.
As far as I know, diet alone cannot control Crohn's, just ameliorate some of the symtpoms. I do have a problem with fibre - brown bread,cereals, fibrous vegetables, sweetcorn, peas etc. Salad also makes the diarrhea worse. This is normal with Crohn's. I stick to a high protein, low fibre and low fat diet. I rarely eat bought processed foods as there is so much junk in them, preferring to make our own food. I make my own pasta for lasagne, canneloni etc., and my husband makes our own bread, with no chemical additives. He is a gadget freak and makes it in a bread machine - real easy.
I hope I have set your mind at rest somewhat, but you really should see a gastro and talk your problem through with him. Broadly speaking, the USA is far ahead than the UK in most medical treatments, and your gastro may have other solutions that I don't know about.
Please let me know if I can help further.
Take care,
Liz.
I have never had an "ulcer or crypt abscess" removed. When I have had a flare, the inflammation that causes the ulcers and abscesses (which burst with terrible bleeding from the anus) has always been treated with IV steroids (prednisone). However, I notice from your information that you had a stricture and this was most probably the reason for the surgery, which also removed the ulcer in the strictured part of the terminal ileum. It is only this year that I was diagnosed with a stricture, but it is not causing any problems, and I have been told on many occasions by different gastros, in the UK and USA,, once the surgeons start removing parts of the intestine, the diarrhea can get much worse.
It is theoretically possible that this attack of pain could have been a mild case of Crohn's, as you had no weight loss or severe diarrhea - which were the only symptoms I presented with 37 yrs ago. It did take 5 hospitals and 9 months to get a diagnosis, as Crohn's wasn't heard of much then, and colonoscopy not available in the UK. If I remember correctly, after being tested negative for Coeliac, my gastro did some weird tests, Schilling, B12 absorption etc. After being in the hospital for 3 weeks I suddenly got a nagging pain in the area where the appendix is (the terminal ileum sits right next to the appendix), needed a blood transfusion, and then they did a laparotomy to see what the problem was. They found 15 different segments very inflamed and biopsied the tissue. This is how I was eventually diagnosed with Crohn's. I was put on 60 mg of prednisone a day and doubled my weight in 6 weeks - appetite like a horse.
I am frantically trying to think what else drew them to this conclusion before surgery: my white cell count was very high, which happens with severe inflammation. However, in the last 2-3 yrs there is a new test for digestive inflammation, called Calprotectin. This is not invasive, all you have to do is give a stool test. I had this recently as my previous test 4 months ago showed a higher level of calprotectin than normal.
The test will not show WHERE the inflammation in the digestive tract is, but this gives the gastro the information he needs to do invasive testing, such as endoscopy of the small intestine, and colonoscopy for the large intestine.
As for the Crohn's coming back, I am afraid even a gastro can't give you the stats on that. Crohn's is never cured, just goes into remission. You may, I hope, be one of the lucky ones, who gets a couple of flares and it does not impact too much on your life. In my case, I went down to 70 lbs and had serious malnutrition. I never had bleeding until we went to live in Spain in 1985, but have had a number of episodes since then, one in America where I nearly died.
I would certainly see a gastro - a surgeon is really not qualified to monitor your condition. Do you have a copy of the surgeon's report post-op? The gastro will need to see this, then he can take it from there. He will ask you about your symptoms, and then it is up to him. I somehow doubt that a gastro will prescribe steroids at present, as your symptoms are mild. I take one 5mg tablet of codeine phosphate in the morning, along with my other 4 drugs, which does ease the cramps. One thing I have learned over the years is that steroids do not keep the disease in remission although they do calm a flare down.However, steroids do cause significant bone loss, and after a DEXA bone density scan in February I have been put on weekly Alendronic Acid with Calcichew/VitD3 to build up my bones. I have had two metatarsal fractures in both feet in the last 3 months, which is due to long term steroids. I don't take them anymore on my gastro's advice.
I now self inject 15 mg of methotrexate, which is an immuno-suppressant, once weekly and am doing fairly well on it. Just diarrhea on rising. However,bone marrow is causing current concern as my red cells are out of range (low haemoglobin, high mean corpuscular volume, high mean haemoglobin), which means my red blood cells are grossly enlarged as they come out of the bone marrow, so I have extended the 7 day injection to 8 days to see if this will help. My gastro says there is nothing else he can prescribe and I have to choose between quality or quantity of life. The side effects of methotrexate (which is a cytotoxic drug) are pretty serious, but I don't feel I have any alternative at present. Help is on the horizon though, as gastros in the US and continental Europe are doing leukapharesis of the blood (similar to kidney dialysis), putting it in a centrifuge and extracting the part that causes the immune system to go out of control), but this is not being done in England at present. There was an interesting article in my last Crohn's Assocn newsletter to the effect that stem cell transplants given to leukemia patients had, quite by accident, their Crohn's cured. Now that is like winning the lottery! The results of this treatment were encouraging though risks were substantial . A Europe-wide trial is about to begin on this area. The Professor involved in stem cell transplants emphasised that they were a radical and dangerous solution in general and only really to be considered if all other treatments have failed.
As far as I know, diet alone cannot control Crohn's, just ameliorate some of the symtpoms. I do have a problem with fibre - brown bread,cereals, fibrous vegetables, sweetcorn, peas etc. Salad also makes the diarrhea worse. This is normal with Crohn's. I stick to a high protein, low fibre and low fat diet. I rarely eat bought processed foods as there is so much junk in them, preferring to make our own food. I make my own pasta for lasagne, canneloni etc., and my husband makes our own bread, with no chemical additives. He is a gadget freak and makes it in a bread machine - real easy.
I hope I have set your mind at rest somewhat, but you really should see a gastro and talk your problem through with him. Broadly speaking, the USA is far ahead than the UK in most medical treatments, and your gastro may have other solutions that I don't know about.
Please let me know if I can help further.
Take care,
Liz.
Hey, I noticed I'm having diarehea again. I wonder if I should tell my doctor? I was trying to watch what I'm eating. I guess I need to be more careful again. I don't know if this is because I'm still healing from surgery or I'm reacting to certain foods. I'm trying to watch that. Do you have any problems with certain foods?
Please write back! You're the only one I know how seems to understand all of this!
Please write back! You're the only one I know how seems to understand all of this!
Hi Lizziecee! I saw my surgeon yesterday. He said he is going to refer me to a Gastroenterologist next to see if or what they want to do for me. He seems rather dismissive now and acts like since it was just a small ulcer that it might not be worth following up on. What do you think? Do you think since it was such a small ulcer and there was only one that they took out, that I may not have any more symptoms? Even if it was Crohn's, could it be gone now that they took that ulcer out? I figured if it really was Crohns that it must be a mild case since there was only one ulcer. And my surgeon says that I was asymptomatic and didn't portray the normal symptoms of Crohns. That may be true in that I didn't have the bloody stools, vomiting, weight loss issues but I still did have stomach or abdominal pain for about 4 or 5 months with some loose, somtimes diarehea. So if it wasn't from the Crohn's, what else could have been going on? It's just a little frustrating to me that so I might not be such an interesting case anymore so I'm being dismissed. I still have had stomach issues then that we need to figure out why. I did have the H.Pylori awhile back but he says there's no connection with the ulcer in my Terminal Ileum. He also said that he wouldn't think I'd need the B12 shots (that you mentioned) since he only cut out about 7 or 8 inches of Terminal Ileum and he said he left plenty. I didn't realize the Terminal Ileum was that big. Maybe I'm just being too sensitive. For the most part I really like my surgeon and he's been real nice. Still, he felt he needed to cut this thing out since there was some narrowing in that area and they were afraid it would grow and cause blockage. That's another thing. I can't figure out why this mass all of a sudden started to grow. They saw it three years ago. I guess from what I heard that with Crohns you can have flare ups and then times of remission. What's the possiblilty do you think, of this coming back? If they cut out the only ulcer and fibrous scar tissue that they saw could I not ever have a problem with this again? Is it possible for it to not come back?
And what do you think I should discuss with the Gastroenterologist when I see him? What other kinds of tests do you think I should ask for? Is it possible to control this with just diet?
Sorry, I know I have a lot of questions! I hope you can wade through them all! :) It's ok if you don't know everything. I just figured that someone like you who has had Crohn's for so long, that you are pretty knowledgeable at this point on all of this. Thanks for all your help! I look forward to hearing back from you!
And what do you think I should discuss with the Gastroenterologist when I see him? What other kinds of tests do you think I should ask for? Is it possible to control this with just diet?
Sorry, I know I have a lot of questions! I hope you can wade through them all! :) It's ok if you don't know everything. I just figured that someone like you who has had Crohn's for so long, that you are pretty knowledgeable at this point on all of this. Thanks for all your help! I look forward to hearing back from you!
Hi again April,
thanks for your last posting - you really are doing well in the knowledge you have researched so far - and you sound very positive. Being positive sure won't cure you of any physical ailment, but does help in coping and enjoying each and every day.
Colon cleanse - please don't go anywhere near that subject. There is a recent post on this gastro forum that is answered by Dr. Kevin Pho on this subject - he advised not to do it. I have to do this for colonoscopies, and I just hate the preparation. I have to stay on the loo for hours, and my anal area gets very sore.
Hope to hear from you when you have seen the gastro.
Take care,
Liz.
thanks for your last posting - you really are doing well in the knowledge you have researched so far - and you sound very positive. Being positive sure won't cure you of any physical ailment, but does help in coping and enjoying each and every day.
Colon cleanse - please don't go anywhere near that subject. There is a recent post on this gastro forum that is answered by Dr. Kevin Pho on this subject - he advised not to do it. I have to do this for colonoscopies, and I just hate the preparation. I have to stay on the loo for hours, and my anal area gets very sore.
Hope to hear from you when you have seen the gastro.
Take care,
Liz.
Hi Liz! I did hear about the Jewish connection. It's interesting. Our descendants came from Scotland and I don't believe we have any Jewish descendants. I have a lot of cancer in my family too, an aunt with breast cancer in both breasts, grandmother with colon cancer, grandfather with lung cancer (although he smoked). I also have a lot of diabetes in my family. I'm really the only one who didn't get that. My friend with Celiac said there's a connection between diabetics having Celiac. My mom said that she's always had gastric or digestive problems and she'd get that checked out.
I really didn't think this mass was cancerous. Everyone was worried and I did feel rushed into surgery. I'm only 42. I've always been in pretty good health until I had an appendectomy three years ago after the birth of my third child. This last year was a pretty bad year and I began to get heart palpitations and then the stomach pains. It's a good idea to bring my husband with me to the Gastoenterologist when I go. I'll ask him. He's taken so much time off right now because of my surgery, I hope his work would let him go. I'm sure this is a mild case of Crohns if that is indeed what it is. They did only see the one ulceration, although the fact that I had H.Pylori makes me wonder if I have any stomach ulcers. I asked the doctor if there could be any connection there and he didn't think so. Still, it seemed strange to me that this all happened around the same time. I know Crohns is in the small intestine but I apparently am having other problems in my digestion too if I have had the H.Pylori in my stomach (which is a bacteria in the lining of the stomach which can lead to ulcers if left untreated).
I can understand why this is a taboo subject for many. I find it all intersting. I was looking into a colon cleanse before all this happened to help me with my stomach aches and the lady at the health food store said that life begins in the colon and also death can begin in the colon. I wasn't sure what she meant but I assumed she meant how important our digestion system is and how important our diet is with how well we will feel, etc. I've always been interested in health foods and diet. I haven't always ate as well as I should! But I'm beginning to think it does have a lot to do with how we feel. This last year I hadn't ate so well because there was so much going on that we ate a lot of processed and fast foods, more than usual. I'm trying to be very careful again with what I eat.
You didn't bombard me at all! :) I appreciate all the info. You seem very knowledgeable and apparently have had to deal with this for a long time. It will be intersting to see what the Gasto doctor said.
Thanks for writing back! I'll let you know what the doc says when I learn more!
Blessings,
April
I really didn't think this mass was cancerous. Everyone was worried and I did feel rushed into surgery. I'm only 42. I've always been in pretty good health until I had an appendectomy three years ago after the birth of my third child. This last year was a pretty bad year and I began to get heart palpitations and then the stomach pains. It's a good idea to bring my husband with me to the Gastoenterologist when I go. I'll ask him. He's taken so much time off right now because of my surgery, I hope his work would let him go. I'm sure this is a mild case of Crohns if that is indeed what it is. They did only see the one ulceration, although the fact that I had H.Pylori makes me wonder if I have any stomach ulcers. I asked the doctor if there could be any connection there and he didn't think so. Still, it seemed strange to me that this all happened around the same time. I know Crohns is in the small intestine but I apparently am having other problems in my digestion too if I have had the H.Pylori in my stomach (which is a bacteria in the lining of the stomach which can lead to ulcers if left untreated).
I can understand why this is a taboo subject for many. I find it all intersting. I was looking into a colon cleanse before all this happened to help me with my stomach aches and the lady at the health food store said that life begins in the colon and also death can begin in the colon. I wasn't sure what she meant but I assumed she meant how important our digestion system is and how important our diet is with how well we will feel, etc. I've always been interested in health foods and diet. I haven't always ate as well as I should! But I'm beginning to think it does have a lot to do with how we feel. This last year I hadn't ate so well because there was so much going on that we ate a lot of processed and fast foods, more than usual. I'm trying to be very careful again with what I eat.
You didn't bombard me at all! :) I appreciate all the info. You seem very knowledgeable and apparently have had to deal with this for a long time. It will be intersting to see what the Gasto doctor said.
Thanks for writing back! I'll let you know what the doc says when I learn more!
Blessings,
April
Just re-read your original post and realise I didn't answer some of your questions. Here goes.
I believe Crohn's does tend to run in families, but neither my late twin brother nor my sister have Crohn's and I don't know of anyone even in my extended family, that has it. There is also strong evidence that Crohn's (and also bc) is very prevalent in the Ashkenazi Jewish population (who emanate from Eastern Europe) and of couse did emigrate to the USA and Western Europe. I can remember my first gastro asking me if I had any Jewish blood. I was not aware of any, but my elder sister suspects my maternal grandfather was Jewish. Every gastro I have seen has also asked asked me the same question.
The Wellcome Trust Case Control Consortium in England is doing a £9million research study on the genetics of Crohn's and have identified some new genes as an underlying cause of Crohn's (but not UC). These are: autophagy-related 16-like-1 (ATG16L1); NOD2 gene and tumour necrosis factor (TNFSF-15). This is a quantum step in understanding what exactly causes Crohn's.
Colon cancer - I am afraid my father died of colon cancer when he was 59 yrs. My gastro said I am at high risk of the Crohn's turning to cancer, so I have a colonoscopy of my large intestine every 2-3 years. There is a lot of cancer in my family - my twin brother died of brain cancer when he was 50 yrs, and all of my father's 7 siblings died of various cancers, breast, colon and lungs. I tend not to dwell on this as what happens, will.
Stress - gastro's are well aware that stress can exacerbate existing Crohn's but the jury is still out on whether or not this is a causal factor in developing the disease. I tend to think it is, as I had a very stressful 1st marriage with physical and mental abuse. I was dx at age 24. My Crohn's has been so much better in my 2nd marriage as I have a very loving and caring husband.
Diet - I have seen many hospital dieticians over the years - they at first thought I was lactose intolerant and I went on a dairy free diet for 3 months, but this did not help at all. Gastros tend to say "eat whatever you want" but eliminate foods that give you cramps or worsen the diarrohea. I stick to a high protein, low fibre diet. With veggies, I cut out all the fibrous stalks of broccoli, cauliflower and cabbage and even the stalks of spinach. I can't eat cereals, as they give me instant "runs". Otherwise, I eat little red meat, and stick to poultry and fish for my protein.
Sorry to bombard you with all this - but when I got Crohn's I had no-one knowledgeable to talk to, and there was no internet then. The local library has no information whatsoever.
Take care,
Liz.
I believe Crohn's does tend to run in families, but neither my late twin brother nor my sister have Crohn's and I don't know of anyone even in my extended family, that has it. There is also strong evidence that Crohn's (and also bc) is very prevalent in the Ashkenazi Jewish population (who emanate from Eastern Europe) and of couse did emigrate to the USA and Western Europe. I can remember my first gastro asking me if I had any Jewish blood. I was not aware of any, but my elder sister suspects my maternal grandfather was Jewish. Every gastro I have seen has also asked asked me the same question.
The Wellcome Trust Case Control Consortium in England is doing a £9million research study on the genetics of Crohn's and have identified some new genes as an underlying cause of Crohn's (but not UC). These are: autophagy-related 16-like-1 (ATG16L1); NOD2 gene and tumour necrosis factor (TNFSF-15). This is a quantum step in understanding what exactly causes Crohn's.
Colon cancer - I am afraid my father died of colon cancer when he was 59 yrs. My gastro said I am at high risk of the Crohn's turning to cancer, so I have a colonoscopy of my large intestine every 2-3 years. There is a lot of cancer in my family - my twin brother died of brain cancer when he was 50 yrs, and all of my father's 7 siblings died of various cancers, breast, colon and lungs. I tend not to dwell on this as what happens, will.
Stress - gastro's are well aware that stress can exacerbate existing Crohn's but the jury is still out on whether or not this is a causal factor in developing the disease. I tend to think it is, as I had a very stressful 1st marriage with physical and mental abuse. I was dx at age 24. My Crohn's has been so much better in my 2nd marriage as I have a very loving and caring husband.
Diet - I have seen many hospital dieticians over the years - they at first thought I was lactose intolerant and I went on a dairy free diet for 3 months, but this did not help at all. Gastros tend to say "eat whatever you want" but eliminate foods that give you cramps or worsen the diarrohea. I stick to a high protein, low fibre diet. With veggies, I cut out all the fibrous stalks of broccoli, cauliflower and cabbage and even the stalks of spinach. I can't eat cereals, as they give me instant "runs". Otherwise, I eat little red meat, and stick to poultry and fish for my protein.
Sorry to bombard you with all this - but when I got Crohn's I had no-one knowledgeable to talk to, and there was no internet then. The local library has no information whatsoever.
Take care,
Liz.
Hi again April - you seem to have a pretty good handle on Crohn's already. As with breast cancer (I am slowly learning that there are many different types and not all patients have the same treatment plan for surgery,chemo, radiotherapy and hormone therapy), Crohn's also has many variations and there many different drugs to control a flare and keep the disease in remission. Although I have an anal fistula which leaks watery faeces, I do not have classic "fistulising Crohn's". A fistula is where the inflammation has leeched out of the intestine to another organ and created a channel. Remicade is only prescribed in the UK for fistulising Crohn's for some reason. This type usually needs surgery, as do strictures. I am surprised that in 37 yrs of Crohn's, I have only this year been diagnosed with a stricture. I did ask my current gastro what the treatment is if it narrows significantly, and he said the only option is surgery.
If you contact the CCFA in the US, they will be able to send you literature that explains diagnosis, treatment and prognosis. They will also know of any local chapter, where Crohn's and Ulcerative Colitis patients can meet up socially. This can be a big support, as I feel that Inflamatory Bowel Disease is still a socially taboo subject. My local Crohn's Association in Plymouth meets once a month in a pub to plan fund raising etc and twice a year my gastro attends a big meeting at the hospital where he brings us up to date on new research into the causes, and new meds. He also answers questions from the audience. It is a very valuable service, as we don't get long at our hospital appointments to explore all these issues.
You may wish to ask your surgeon for a copy of the pathology report that would be done after the resection and biopsy. Although this will be technical, with Google's help, you should be able to understand it. When I got my patholoy report after my lumpectomy, it was like reading a foreign language. I Googled what I could, but then luckily found 2 breast cancer forums (UK and USA) and the ladies helped me enormously. I now try to do the same for new patients, especially as we are seeing women in their 20's and 30's with bc.
Many thanks for your email address - I'll try it and see if it goes through. Mine is tedark at aol.com.
Do you have an appoinment with a gastro yet? He/she is going to be one of the most important people in your life. I have had some pretty awful ones - when we lived in Spain for 8 years, the guy didn't speak English, would visit me in my room with a cigarette hanging out of his mouth, and draw diagrams on the back of an old envelope! The poor treatment in Spain was one of the reasons we came back to live in England, and I am lucky to have a young consultant gastro, in his early 40's who is passionate about IBD. He does not feel challenged if I ask a question, but does tend to answer as if he was talking to a another doctor. However, I prefer this approach than an arrogant patronising manner. If possible, I would take your husband/partner/friend along with you when you see the gastro, as it is sometimes difficult to take in all they say. Another pair of ears is invaluable. My husband goes with me to all my appointments and he can either remember what the gastro said, or, rarely,mention something I have forgotten.
Although Crohn's is a very serious disease, it is not a death sentence, and with proper medical care, you should be able to live a long and fulfilling life.
Take good care, and let me know how you get on with the gastro.
Liz
If you contact the CCFA in the US, they will be able to send you literature that explains diagnosis, treatment and prognosis. They will also know of any local chapter, where Crohn's and Ulcerative Colitis patients can meet up socially. This can be a big support, as I feel that Inflamatory Bowel Disease is still a socially taboo subject. My local Crohn's Association in Plymouth meets once a month in a pub to plan fund raising etc and twice a year my gastro attends a big meeting at the hospital where he brings us up to date on new research into the causes, and new meds. He also answers questions from the audience. It is a very valuable service, as we don't get long at our hospital appointments to explore all these issues.
You may wish to ask your surgeon for a copy of the pathology report that would be done after the resection and biopsy. Although this will be technical, with Google's help, you should be able to understand it. When I got my patholoy report after my lumpectomy, it was like reading a foreign language. I Googled what I could, but then luckily found 2 breast cancer forums (UK and USA) and the ladies helped me enormously. I now try to do the same for new patients, especially as we are seeing women in their 20's and 30's with bc.
Many thanks for your email address - I'll try it and see if it goes through. Mine is tedark at aol.com.
Do you have an appoinment with a gastro yet? He/she is going to be one of the most important people in your life. I have had some pretty awful ones - when we lived in Spain for 8 years, the guy didn't speak English, would visit me in my room with a cigarette hanging out of his mouth, and draw diagrams on the back of an old envelope! The poor treatment in Spain was one of the reasons we came back to live in England, and I am lucky to have a young consultant gastro, in his early 40's who is passionate about IBD. He does not feel challenged if I ask a question, but does tend to answer as if he was talking to a another doctor. However, I prefer this approach than an arrogant patronising manner. If possible, I would take your husband/partner/friend along with you when you see the gastro, as it is sometimes difficult to take in all they say. Another pair of ears is invaluable. My husband goes with me to all my appointments and he can either remember what the gastro said, or, rarely,mention something I have forgotten.
Although Crohn's is a very serious disease, it is not a death sentence, and with proper medical care, you should be able to live a long and fulfilling life.
Take good care, and let me know how you get on with the gastro.
Liz
Thanks so much LIzzicie! You were so helpful and kind. I think some people were able to share emails by spelling it out, like Lizzicie at blah blah dot com. I don't know, you can try it! :)
Mine is swlemongrass at yahoo dot com. I'd love to hear from you again!
And yes, I'm in the States. I'll check out that association, thanks!
I'm hoping I'll learn more when I see the Gastroenterologist.
It's intersting about what you said about the resection. I did feel kinda rushed into this surgery. But they didn't know if it was cancer or what. All they knew was it was a mass that grew and they were concerned. I hope this doesn't make me worse. They cut out about 7 or 8 inches. I'll have to remember about the B12. I may need to supplement then. Thanks for all the info! Hope to hear from you again! :)
God bless.
Mine is swlemongrass at yahoo dot com. I'd love to hear from you again!
And yes, I'm in the States. I'll check out that association, thanks!
I'm hoping I'll learn more when I see the Gastroenterologist.
It's intersting about what you said about the resection. I did feel kinda rushed into this surgery. But they didn't know if it was cancer or what. All they knew was it was a mass that grew and they were concerned. I hope this doesn't make me worse. They cut out about 7 or 8 inches. I'll have to remember about the B12. I may need to supplement then. Thanks for all the info! Hope to hear from you again! :)
God bless.
Hi again - just looked at my post and my e-mail address did not get through. Don't know how you can contact me privately.
Bip - thanks for suggesting I reply to April. This can be a terrifying disease at the outset, as even now, most people have never heard of Crohn's.
Do you know how we can exchange e-mail addresses?
Liz.
Bip - thanks for suggesting I reply to April. This can be a terrifying disease at the outset, as even now, most people have never heard of Crohn's.
Do you know how we can exchange e-mail addresses?
Liz.
Hi April - sorry I didn't respond earlier, just been away for a week' R&R with a girlfriend - first time in 2 years!..
I hardly know where to start with your very valid questions......but will try to answer them.
Coeliac -The symptoms (diarrhea and loss of weight, malnutrition) are similar to Crohn's, but the diseases are not at all related. Coeliac is an intolerance to gluten and is completely managed by a gluten free diet. Crohn's is an auto-immune disease, where the white cells attack one's own body as if one had an infection. I was tested for coeliac before I was dx with Crohn's (via an endoscopy to the small intestine, and biopsy) and it was negative thankfully. I have never heard in the 37 yrs I have had Crohn's, of anyone having both diseases, but guess it could happen. In 1970 when I was dx, colonoscopy was unheard of in England, where I live, and eventually I had to have a laparotomy which has left me with a 6" scar from navel to pubic area, so things have progressed somewhat these days. My surgeon found some 15 places of inflammation due to Crohn's and took biopsies for pathology testing. He was aware enough not to resect these areas, as my gastro had already told me that if you start resecting the intestines and shorten them, the diarrohea becomes worse. I have not had any resections. However, earlier this year my gastro ordered an endoscopy of the small bowel as it is some 5-6 yrs since I last had one. This showed a stricturing (narrowing) in one area, and although I have no pain or problem, he said I have to be aware, and if I get sudden pain in the lower abdomen, to go to the ER immediately, as the intestine can burst if the stricturing continues to narrow.
I too did not "present" normally for Crohn's - in those far off days I "only" had severe weight loss (went down to some 70 lbs) and really bad diarrhoea.
Crohn's vs Ulcerative Colitis - UC is not an auto-immune disease, and only affects the large bowel. Although steroids are used for both diseases, many of the newer drugs (like immuno-suppressants) are used only for Crohn's.
Terminal ileum - you are correct in that Crohn's usually shows up in this area and with episodes of severe inflammation and adhesions, can affect the body's ability to metabolise vitamin B12. I have had this problem for some 15 yrs and have bi-monthly B12 shots since even if I eat foods rich in B12, the terminal ileum cannot absorb it, and the terminal ileum is the only place in the body that can do this. Even oral B12 tablets are not successful - you need the B12 injected directly into the bloodstream.
It seems as if your surgeon is pretty sure you have Crohn's, evidenced by resecting the strictured part of your small intestine, near the terminal ileum. If your surgeon is convinced you do have Crohn's you very definitely need to be under the care of a good gastro who has experience of dealing with Crohn's, as it can be difficult to treat.
I don't know where you live, but if in the USA, you may wish to contact the Crohn's & Colitis Foundation of America - who have lots of leaflets which will be helpful. If in the UK, the National Association of Colitis & Crohn's can help. Just google them and you will find a lot of information.
I don't know if I can post my e-mail address here, but will try, and you can always e-mail me direct if you want further information "from the horse's mouth".
My e-mail is: ***@****.
Otherwise, post back to this site and I will answer there.
Take care - I know how scary this diagnosis is, but hey, I am still here living a good life 37 yrs later - and, I got invasive breast cancer 4 years ago! Try and be positive - it won't cure you, but sure does make living with terrible diseases better day by day.
Liz.
Crohn's is not necessarily a "disease for life" - when I first got it, my gastro said some patients only get 1 or 2 flares, and then the disease just seems to calm down. Unfortunately, I have what he calls "intractable" Crohn's, which I guess means it can't be cured. It can however be controlled. For the past 6 years I have been on an anti-suppressant called methotrexate, which is a cytotoxic chemotherapy drug and am doing well on it. I self inject now, once a week, as my gastro said that when I was taking it orally once a week, he wasn't sure how much my body was metabolising it. I have been much better on the on the injections.
I hardly know where to start with your very valid questions......but will try to answer them.
Coeliac -The symptoms (diarrhea and loss of weight, malnutrition) are similar to Crohn's, but the diseases are not at all related. Coeliac is an intolerance to gluten and is completely managed by a gluten free diet. Crohn's is an auto-immune disease, where the white cells attack one's own body as if one had an infection. I was tested for coeliac before I was dx with Crohn's (via an endoscopy to the small intestine, and biopsy) and it was negative thankfully. I have never heard in the 37 yrs I have had Crohn's, of anyone having both diseases, but guess it could happen. In 1970 when I was dx, colonoscopy was unheard of in England, where I live, and eventually I had to have a laparotomy which has left me with a 6" scar from navel to pubic area, so things have progressed somewhat these days. My surgeon found some 15 places of inflammation due to Crohn's and took biopsies for pathology testing. He was aware enough not to resect these areas, as my gastro had already told me that if you start resecting the intestines and shorten them, the diarrohea becomes worse. I have not had any resections. However, earlier this year my gastro ordered an endoscopy of the small bowel as it is some 5-6 yrs since I last had one. This showed a stricturing (narrowing) in one area, and although I have no pain or problem, he said I have to be aware, and if I get sudden pain in the lower abdomen, to go to the ER immediately, as the intestine can burst if the stricturing continues to narrow.
I too did not "present" normally for Crohn's - in those far off days I "only" had severe weight loss (went down to some 70 lbs) and really bad diarrhoea.
Crohn's vs Ulcerative Colitis - UC is not an auto-immune disease, and only affects the large bowel. Although steroids are used for both diseases, many of the newer drugs (like immuno-suppressants) are used only for Crohn's.
Terminal ileum - you are correct in that Crohn's usually shows up in this area and with episodes of severe inflammation and adhesions, can affect the body's ability to metabolise vitamin B12. I have had this problem for some 15 yrs and have bi-monthly B12 shots since even if I eat foods rich in B12, the terminal ileum cannot absorb it, and the terminal ileum is the only place in the body that can do this. Even oral B12 tablets are not successful - you need the B12 injected directly into the bloodstream.
It seems as if your surgeon is pretty sure you have Crohn's, evidenced by resecting the strictured part of your small intestine, near the terminal ileum. If your surgeon is convinced you do have Crohn's you very definitely need to be under the care of a good gastro who has experience of dealing with Crohn's, as it can be difficult to treat.
I don't know where you live, but if in the USA, you may wish to contact the Crohn's & Colitis Foundation of America - who have lots of leaflets which will be helpful. If in the UK, the National Association of Colitis & Crohn's can help. Just google them and you will find a lot of information.
I don't know if I can post my e-mail address here, but will try, and you can always e-mail me direct if you want further information "from the horse's mouth".
My e-mail is: ***@****.
Otherwise, post back to this site and I will answer there.
Take care - I know how scary this diagnosis is, but hey, I am still here living a good life 37 yrs later - and, I got invasive breast cancer 4 years ago! Try and be positive - it won't cure you, but sure does make living with terrible diseases better day by day.
Liz.
Crohn's is not necessarily a "disease for life" - when I first got it, my gastro said some patients only get 1 or 2 flares, and then the disease just seems to calm down. Unfortunately, I have what he calls "intractable" Crohn's, which I guess means it can't be cured. It can however be controlled. For the past 6 years I have been on an anti-suppressant called methotrexate, which is a cytotoxic chemotherapy drug and am doing well on it. I self inject now, once a week, as my gastro said that when I was taking it orally once a week, he wasn't sure how much my body was metabolising it. I have been much better on the on the injections.
Have an Answer?
You are reading content posted in the Gastroenterology Community
Learn which OTC medications can help relieve your digestive troubles.
Is a gluten-free diet right for you?
Discover common causes of and remedies for heartburn.
This common yet mysterious bowel condition plagues millions of Americans
Don't get burned again. Banish nighttime heartburn with these quick tips
Get answers to your top questions about this pervasive digestive problem
