Aa
finally an answer
Hi all, I have been sick on and off for years. I have gotton increasingly worse this year. I have been to 3 neurologist and my own dr and have had many test and mri's. I finally saw a gastronologist last week and for the first time i feel i am on the road to answers. He said he strongly suspects crohns and has scheduled me for an or colonoscopy. he also explained the severe pain i have had in my lower left back, sacariliac. I am happy i am finally getting answers but also nervous at what they are.Can anyone tell me a little about how they found out they had crohns? thanks for listening
Hey Linda,
I was diagnosed with Crohn's in 2001 after rectal bleeding and diarrhea. Crohn's can occur anywhere from the mouth to the anus. Mine is colo-rectal and I have not had to have any colon removed. I did have a cyst removed from my backside once; it was not yet a fistula. Medication can usually control your problems and the colonoscopy will tell the dr. all the details. Just make sure you keep taking your meds. It was only after I insisted I had been in remission long enough not to take all those meds that I got in trouble again. Now it may be in my lungs-will find out Mon. for sure. Yes, it can go to other systems in your body. I never had any pain with my Crohn's either. There are so many different symtoms for this disease. You will need to see what your test shows and follow orders.
Good luck. Also, I took Prevacid for acid reflux with no success and had to have surgery to stop it. That was when they thought my year-old cough was caused by acid reflux. Not so! But at least I won't get cancer of the esophagus now. I also was diagnosed with an aortic aneurysm while looking at the lungs for an answer to my cough. It is scary when other things start happening when you are only concerned with one disease. The cardiologist says we will watch it every 6-8 months b/c it is only 4cm and they don't do anything unless it is 5 or 5.5 cm. I am glad about that. I thought my constant coughing would worsen the situation, but not so according to him. Hope you get some good answers soon. I hate the hurry up- take the test- wait- wait- talk to dr.-take meds-wait some more plan of action, but I guess we all have to deal with that.
I was diagnosed with Crohn's in 2001 after rectal bleeding and diarrhea. Crohn's can occur anywhere from the mouth to the anus. Mine is colo-rectal and I have not had to have any colon removed. I did have a cyst removed from my backside once; it was not yet a fistula. Medication can usually control your problems and the colonoscopy will tell the dr. all the details. Just make sure you keep taking your meds. It was only after I insisted I had been in remission long enough not to take all those meds that I got in trouble again. Now it may be in my lungs-will find out Mon. for sure. Yes, it can go to other systems in your body. I never had any pain with my Crohn's either. There are so many different symtoms for this disease. You will need to see what your test shows and follow orders.
Good luck. Also, I took Prevacid for acid reflux with no success and had to have surgery to stop it. That was when they thought my year-old cough was caused by acid reflux. Not so! But at least I won't get cancer of the esophagus now. I also was diagnosed with an aortic aneurysm while looking at the lungs for an answer to my cough. It is scary when other things start happening when you are only concerned with one disease. The cardiologist says we will watch it every 6-8 months b/c it is only 4cm and they don't do anything unless it is 5 or 5.5 cm. I am glad about that. I thought my constant coughing would worsen the situation, but not so according to him. Hope you get some good answers soon. I hate the hurry up- take the test- wait- wait- talk to dr.-take meds-wait some more plan of action, but I guess we all have to deal with that.
Hi Linda, If I understand your question about Prevacid correctly, I have the answer. I have been on it for years for Gerd. I am on 25 other meds so am always asking if there is something I can go off of. I am told time and time again about Prevacid is that it not only helps your gerd but keeps it healthy. In other words, there are no side effects, no possible long term damage to anything and no reason to go off of it. Especially with all the other things I have going on with my body. Crohns,Diabeties, Bi Poloar, Arthritis etc etc. I guess that is one safe drug I dont have to worry about.I too am so tired of being sick and tired. Let there be a cure for all maladies of the colon soon soon soon.
hey all, I went to myy doctor for my check up yesterday and was confirmed with sacrioliitis. It definatley explains all the joint pain! they said it is probably from the crohns[although not definite diagnose yet} colonoscopy first week of december. I also have a growth on my elbow that needs to be removed and biopsied a.s.a.p, AND he found a lump in my neck! All these years and I finally am getting answers but WOW so many and lots of new questions! I have an ultrasound on my neck on the 7 dec. I am at the point now i am so tired of being sick and tired i don't care what it is i just want to take care of it! I too was an IBS and Gerd girl for the last 20 years. I have been on prevcid for years. do you know will i continue with this or will the other things they end up giving me to replace it? From what I can see once i am confirmed with crohns there are many drugs that are given. Thanks to you both, your advice and experience is both helpful and comforting!! lots of luv linda
I was dx at age 24 in 1970. My symptoms were severe loss of weight and diarrhea. I went down to 60 lbs but was still eating properly, although obviously not absorbing any nutrients. I had no pain whatsoever, which is why the physician did not think of Crohn's. In those days there was no colonoscopy or endoscopy here in England and I had numerous blood tests, faceal fat collection etc.
I was hospitalised for 3 weeks for blood transfusions and tests and one evening I got pain in my right side, near the appendix. My abdomen swelled and became hard, I believe it is called toxic colon, and can be life threatening. The physician decided I needed a laparotomy to find out what was going on. They found some 15 different places in my small intestine that had either ulcers or crypt abscesses. The surgeon said he did not want to resect all those areas as I would have ended up with virtually no small intestine. They put me on to 60 mg daily prednisone.
Since then I have had various flares for severe rectal haemorrhages, always sorted out by IV steroids. However, some 6 years ago I was surfing the net to see what was new in Crohn's meds and found methotrexate, which is a chemo drug, used to be given for breast cancer, and is now used for Crohn's, psoriasis and rheumatoid arthritis. I was taking 25 mg weekly, but was losing weight again with bad diarrhea and my gastro switched me to injections, 12.5 mg once a week, as this way he knew exactly how much mtx I was having, and it went straight into the bloodstream. I have been fine since, except for a four 4 month sabbatical when I got breast cancer 4 yrs ago and had to stop the mtx in order to have FEC chemo.
Just recently my gastro decided to do an endoscopy of the small intestine as it is some years since I had one, and again I was losing weight. He found a stricture (didn't enlighten me as to which part of the small intestine) and I am having an MRI 16 Nov to determine the extent. He said I am probably looking at a resection of the strictured part. VC is quite right in saying that we should avoid surgery, as this is what I was told when I was first diagnosed. However, a stricture can be life threatening if it gets too narrow for food to get through and could burst.
I was hospitalised for 3 weeks for blood transfusions and tests and one evening I got pain in my right side, near the appendix. My abdomen swelled and became hard, I believe it is called toxic colon, and can be life threatening. The physician decided I needed a laparotomy to find out what was going on. They found some 15 different places in my small intestine that had either ulcers or crypt abscesses. The surgeon said he did not want to resect all those areas as I would have ended up with virtually no small intestine. They put me on to 60 mg daily prednisone.
Since then I have had various flares for severe rectal haemorrhages, always sorted out by IV steroids. However, some 6 years ago I was surfing the net to see what was new in Crohn's meds and found methotrexate, which is a chemo drug, used to be given for breast cancer, and is now used for Crohn's, psoriasis and rheumatoid arthritis. I was taking 25 mg weekly, but was losing weight again with bad diarrhea and my gastro switched me to injections, 12.5 mg once a week, as this way he knew exactly how much mtx I was having, and it went straight into the bloodstream. I have been fine since, except for a four 4 month sabbatical when I got breast cancer 4 yrs ago and had to stop the mtx in order to have FEC chemo.
Just recently my gastro decided to do an endoscopy of the small intestine as it is some years since I had one, and again I was losing weight. He found a stricture (didn't enlighten me as to which part of the small intestine) and I am having an MRI 16 Nov to determine the extent. He said I am probably looking at a resection of the strictured part. VC is quite right in saying that we should avoid surgery, as this is what I was told when I was first diagnosed. However, a stricture can be life threatening if it gets too narrow for food to get through and could burst.
Hi lindalee, No they didn't do the surgery at the time of the colonoscopy. I had the colonoscopy on Friday and the resection on Monday. The only reason I had to have surgery is because of the fact I had a fistula to my bladder. They were going to have to go in to fix my bladder anyway and that is why they waited to find out what I had instead of numerous other tests first to determine. Surgery is usually the last resort for Crohn's sufferers because it most likely will come back and you only have so much guts to give up.
Even when we have fistulae, surgery is the last thing, but since mine was considered a complication I had to have it done. Please don't worry about waking up and finding you have had surgery. That won't happen. But it is scary not knowing what to expect. Can I recommend you check out the following websites. This one is good but it doesn't have much traffic.
www.ibdsucks.com
and
www.healingwell.com
Both of the website have been life-savers for me. I feel like I'm finally in control. Good luck
Even when we have fistulae, surgery is the last thing, but since mine was considered a complication I had to have it done. Please don't worry about waking up and finding you have had surgery. That won't happen. But it is scary not knowing what to expect. Can I recommend you check out the following websites. This one is good but it doesn't have much traffic.
www.ibdsucks.com
and
www.healingwell.com
Both of the website have been life-savers for me. I feel like I'm finally in control. Good luck
thank you for your response. I am 41 with 2 great kids. This has really taken a toll on me and the family as i am extremely fatigued all the time. i am a hairdresser and cut my hours down to prt time about 4 months ago. I am a little nervous about when they get inside what they find. Did they do surgery when you ahd the colonoscopy or did they wait and explain and do it later. Some of my symtpoms include watery diareah all the time, nausea, severe pain in abdomen and lower back and joints, i also have red cyst-like bumps on my skin. I have been up and down on my weight. but the last 5 weeks i have lost 7 pounds. thanks again for your response, it really helps talking to people who have been thru it.
Hi Lindalee
I had "d" for over 30 years. At the age of 17 I went to my doctor and he said I was Lactose Intolerant. At 31 I went to another doctor and he said my symptoms were probably IBS. My daughter was diagnosed with Crohn's when she was 12. Everything I read about Crohn's said weight loss was a common symptom. Well I couldn't have it because the doctors said it was lactose intolerance and IBS. And I never lost weight. In fact I was quite heavy. August of '06 I developed a bladder infection. I noticed I also passed air when I urinated. I vaguely remembered reading something about that when I was investigating my daughters case 14 years earlier. Did some research on the internet about passing air and the first thing that popped up was Crohn's. My doctor wanted me to go see an urologist but I suspected and started putting 2 and 2 together and maybe I needed to go see a GI. I decided to let the hospital decide. Went to the ER and a CT scan was done and a fistula was found go to my bladder. It was dumping feces and that is what caused the bladder infection. I was admitted that night (Thursday)
The Colo/Rectal surgeon that was handling my case wanted to do a colonoscopy the next morning. Couldn't get through my sigmoid I was so scared up after years of uncontrolled disease. He believed it wasn't Crohn's (5%) and more likely (90%) diverticulitis. Don't forget I was a heavy woman. Surgery was scheduled for Monday morning. Turns out it was Crohn's. They had to remove half of my colon. All the sigmoid, all the descending and part of the transverse.
A year later I'm still in remission. After years of having "d" I have normal bm's 9 days out of 10. I found out the reason I don't lose weight when I flared was because of the location of the disease activity and I had absolutely no energy. Could barely make it through the day.
3 months after the surgery I had a very bad reaction to 6-MP. Ended up with bone-marrow suppression and landed back in the hospital for 11 days. At the first of the year I joined the YMCA and I have lost 60 lbs. I still have about 40 more to go but I'm heading in the right direction.
By the way, my daughter is now 26 with 3 of the most beautiful children. She hasn't had a major flare since right after my first grandchild was born 6 years ago.
Good Luck
I had "d" for over 30 years. At the age of 17 I went to my doctor and he said I was Lactose Intolerant. At 31 I went to another doctor and he said my symptoms were probably IBS. My daughter was diagnosed with Crohn's when she was 12. Everything I read about Crohn's said weight loss was a common symptom. Well I couldn't have it because the doctors said it was lactose intolerance and IBS. And I never lost weight. In fact I was quite heavy. August of '06 I developed a bladder infection. I noticed I also passed air when I urinated. I vaguely remembered reading something about that when I was investigating my daughters case 14 years earlier. Did some research on the internet about passing air and the first thing that popped up was Crohn's. My doctor wanted me to go see an urologist but I suspected and started putting 2 and 2 together and maybe I needed to go see a GI. I decided to let the hospital decide. Went to the ER and a CT scan was done and a fistula was found go to my bladder. It was dumping feces and that is what caused the bladder infection. I was admitted that night (Thursday)
The Colo/Rectal surgeon that was handling my case wanted to do a colonoscopy the next morning. Couldn't get through my sigmoid I was so scared up after years of uncontrolled disease. He believed it wasn't Crohn's (5%) and more likely (90%) diverticulitis. Don't forget I was a heavy woman. Surgery was scheduled for Monday morning. Turns out it was Crohn's. They had to remove half of my colon. All the sigmoid, all the descending and part of the transverse.
A year later I'm still in remission. After years of having "d" I have normal bm's 9 days out of 10. I found out the reason I don't lose weight when I flared was because of the location of the disease activity and I had absolutely no energy. Could barely make it through the day.
3 months after the surgery I had a very bad reaction to 6-MP. Ended up with bone-marrow suppression and landed back in the hospital for 11 days. At the first of the year I joined the YMCA and I have lost 60 lbs. I still have about 40 more to go but I'm heading in the right direction.
By the way, my daughter is now 26 with 3 of the most beautiful children. She hasn't had a major flare since right after my first grandchild was born 6 years ago.
Good Luck
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