Hello
I was just dianosed with Crohn's disease last week. The doctor has put me on Asacol. Can anyone tell me anything more about this disease. I have been researching it on the internet for the last week but I would really like to chat with people who are going through it as well. They say that my case is mild which is good but I am still scared. I have never had anything like this happen to me before. I do not know what to think exactly. I am still in shock. Any insight would be great. Thank you
Lissie

Hi Lissie,

The information on Asacol is basically 5-ASA and is effective for some people. My sister who has both Crohn's and Ulcerative Colitis, was on that med. I have severe Crohn's and was on Pentasa. It did not work for everyone. You are in a mild stage which is good because if you keep diary of your meds and stick to a good diet you should be okay. I have had Crohn's for just over 9 years (diagnosed and had surgery) but have had it since 17 yrs of age. If you are in a mild stage, ask your doctor about Entocort (insurance should pay for it, cause it is expensive) , yes it is a steroid but very mild with less side effects of Prednisone. It should help maintain your flareups to a minimal. I know you are afraid, but stress is a culprit to bringing it on worse. Everyone is different on their symptoms and medications, my other 4 brothers and sisters have a form of Crohn's or IBS. Yes it is very hereditary. Chew slow and stay away from raw veggies, popcorn and generally soft foods. Stay away from smoking, alcohol and stress, they agitate the bowels. If you must go on Predisone, dont let the doctor keep you on it long term, the side effects are not pleasant. Oh you will feel fantastic,at the time, then the side effects kick in later. Keep well if you have any questions, I could help. Also being as I am a Canadian you also have an American CCFA Crohn's and Colitis foundation. Good luck, think positive.

Penny

[This message has been edited by moderator2 (edited 12-05-2002).]

HI Penny
Thank you so much for responding to my questions. I am now at week 3 and I think I am doing better handling the fact that I have a chronic disease that I will never get rid of. So far I have only had one flare up and that was back in June/July. It has taken the doctors this long to decide that it was Crohn's. I have slight inflammation in the last 6 inches of my small intestines and that is why I am on the Asacol. I have been taking it for almost 3 weeks now and my stomach cramps seem to have just about subsided. I have been keeping a diary for the last two weeks of what I can eat and when I go to the bathroom or have cramping. I have an appt with my regular doctor tomorrow to go over everything and I want to get a referral for a nutritionist as I am trying to get pregnant and want to make sure that I am getting everything that I need. I can not believe that you and all of your siblings have some form of Crohn's and IBS. No one in my family has it except me. I do not quite know how I feel about all of this but I am doing better then I was. It is really scary and the internet does not always help. Thank you for your answer. How often do you have flare ups? Do you know what causes yours? Are you able to do everything that you want to do? Sorry for all of the questions but you are the only person that has answered back on several sites where I have posted questions? Thank you again
Lissie

Hi Lissie, you are welcome. Best of luck on getting pregnant, though I should warn you, when I was diagnosed with Crohn's in the beginning the gastroenologist recommend I dont have anymore, turns out I chose a few years early not anyways. The problem with pregnancy is you cannot be on a lot of medication or any if can be helped. You sound like you are in the beginning stages and my first stage was when I was 17. I had bad periods (extremely bad) and diarrhea, contantly and every time I moved, (stress related) I got sick. NO one really knows what actually starts it, but refined sugar (I admit probably too much of it) and a lot of stress in my life, which some I may have created.

I have had one operation of 6 inches of intestine and was almost normal for 8 years, then I had a break up in a commonlaw marriage 4 years ago and it started up again. My first attack since my surgery was last May 24th, July and early Aug. They thought it was a "twisted bowel" but I knew from my old experience that it was an obstructed bowel. Believe it or not it was from a lodged Bratwurst (chewy weiner) and have never eating one since, another was from a kernel of corn from soup. I dont want to scare you because my symptoms this time around are not near as bad because I caught it in time. I was on Prenisone, but finished the meds 2 weeks ago and had a colonoscopy, saying it wasnt all that bad. I was not impressed with his opinion, cause I really have to watch what I eat. My mother figured it out that every time I ended up in the hospital, I was on my period (everything swells)>

I was able to lead a normal life until this summer and now being on nothing is scary for me too. But I have been on too many medications and they are now affecting my muscles. I am waiting for surgery, but since we only have one surgeon, and I live in a small town (the surgeon is in Austrailia for 6 weeks) and now that the gastroenologist says his opinion, I will be on a long waiting list. We have good health systems, just understaffed.

I dont mean to pry, but could you tell me how old you are and how long you have had symptoms of Crohn's? My older sister never had pain until after her surgery, which they took out 16 inches, and she is on Ascol for her colitis as well. Apparently that is pretty rare to get both. She lives in PEI and I am in Northern Ontario, so we havent seen each other in 10 years. She had this for years and they took so long to diagnose us all because we are not skinny.

My first attack I lost 40 lbs in 2 months and that's how a specialist and a teaching doctor figured it out in downtown Toronto.

My advise, is unless your family doctor is up to date and knows alot about Crohn's, mine doesnt, dont let anyone tell you how you should feel. Everyone is different and only other patients can understand. If Asacol is working, that is good. Entocort is a good choice too, but up here it is $300.00 for 2 months. For mild to moderate. There is an herbal remedy called "Cats Claw" which I have heard works, I am going to try it and bought Acidophilus tablets, started last night. Tell me what your symptoms are and discuss every detail with your doctor. Good luck!

Penny

Hi Penny
I just met with my primary doctor yesterday to discuss my disease and get a referral for to see a nutritionist. I really like her and she said yesterday that I am her 3rd patient to have this disease. She says that she reads up on it and she seems to know quite a bit but admitted that it was not her specialty and would be consulting with the gastroentologist regularly about me. She also suggested that I see him regularly for awhile to make sure that all of my questions are being answered.

I am 30 years old and had my first and only episode in June/July of this year. I dropped 20 lbs in a month. I was never overweight so this was alarming. They did a bunch of tests over the next 3 months and just last month they did an Upper GI and small bowel follow through and that is when they found the inflammation. I have a very mild case and since I have only had one flare up the scaring is minimal. My symptoms now are just slight cramping below the abdomine about 4 to 6 hours after I eat. The Asacol seems to be helping that and I only seem to have cramping at night now and it is nothing like it was before. It is very minimal. I never had any symptoms really until I had the flare up this summer at least none that I noticed. Since I was trying to get pregnant at the time and stopped because I was sick I just kept going to the doctors to find out exactly what it was. If I was not trying to get pregnant I probably would not have pursued it as much as I did and it would have been years before I was diagnosed. The doctor said that I caught it in the very beginning and if I eat right I should be able to keep it mild. (Hopefully)

As far as the pregnancy goes. Both doctors told me that it is safe for me to get pregnant on the Asacol and if it is helping I should be able to take it throughout the pregnancy. I do not know if I will do that though. They said I should have no trouble with a pregnancy and that in 1/3 of the cases it even makes the symptoms better. We just started trying again last month so I am waiting to see if I am. I wanted to make sure that I was healthy before I had a baby.

What do the Acidophilus tablets do? I have been reading a lot on the internet and I do not remember seeing them mentioned. I did hear of the Cats Claw but I have not tried that yet. I am trying to keep what I take to a minimal since I am trying to get pregnant. The other symptoms that I had/have are I was very tired, weight loss, cramping, loose/frequent stools, cramping, and anemia. I am very happy with the doctor that I have and thankfully I have a wonderful health provider so everything has been covered with a minimal cost to me. I only have to pay $15 each time I see the specialist or my doctor. All of the blood tests and other tests were covered.

Again I want to thank you for responding. I feel great having you to talk to about this. I am fascinated that your whole family seems to have this diesease or a form of it. Do your parents have it as well? My doctors told me it was up in the air as to whether or not it is hereditary and from what I have read some say it is and some say it is not. I do find it odd that they do not know what causes it. I have been racking my brain trying to figure out something. I do not like not knowing why I have something. I already have a notebook filled with things to bring to my next visit with the GI doctor. Take care and I hope you are feeling good now. Please keep in touch.
Lissie

Hi Lissie,

You mentioned the fact that a doctor told you that it is not heriditary, my mother or father, did not have any part of the disease, but my mother's 2 brothers had IBS and my grandmother had gastroenitis and we found out her uncle has Crohn's but didnt get any information. Crohn's has only had a name since 1976, dont quote me, but the Canadian Crohn's and Colitis foundation was formed then. Apparently in the earlier days, it was thought to be "all in your head, syndrome" and used to surgically remove part of the brain, so it would disappear, so the story goes. Hopefully it will skip another generation (or cure it) someone, maybe a few generations could of had it or not even know what it was, or never diagnosed. Face it people did not discuss their "bathroom" habits.

My mother read in an article that if you are in your first trimester with Rubella (German Measels) can trigger Crohn's. That case is rare, but that did happen to her which was me and I am deaf in one ear. But my daily life is mostly the same as everyone else's until a flare up starts. Are you on anything for diarreaha? I am on Colestyramine and so are my sisters, I dont take imodium, maybe 1 or 2 times a year, but lately I have only taking half a package every other day.

Acidophilus capsules are good active bacteria, killing bad bacteria, which is what causes flare ups and inflamation of the intestines. This is a natural product and you can get it from eating plain yogurt with high culture, but I cant stomach it. I just started it, and doctors will not recomment other herbal supplements cause they dont make money on them and only your pharmacist knows reactions with other meds. Ask them, pharmacist are a great help and you will be seeing them on a regular basis. Acidophilus must be kept in the fridge and on an empty stomach. I am taking 2 capules for now, then back off after a month. How severe are your attacks? How long were you hospitalized? How much is affected? I can only give you my experiences, and I certainly am not going to scare you, dont be like I was "in denial" cause you have to live with it and dont let it take over your life. Do you have any support groups there? If you go to the american crohn's and colitis foundation you will get lots of info. I go to www.ccfc.ca (http://www.ccfc.ca)
and check it out to see if things change. Your specialist will do blood work to make sure your meds are not affecting you. Dont be afraid to ask questions, I wish I had the opportunity when I started and did not have a computer then. Dont worry about your weight, I try to keep on extra just in case. Losing a lot of weight when you are at an ideal weight can cause for concern. I still experiment, but I am still learning and trying different things. Lately my gas pains were excruciating and I took 180 mg (2 tabs) of Simethicone capules, the brand name is Oval 180. It helps, plus I take digestive enzymes with my meal depending on the size or how much protein, (hard to digest) Chicken and turkey are the worst for gas. I wont give up milk so I take Lactaid for dairy. Can you digest milk products? Whether this disease is hereditary or not, it aint going away. We have 13 grandchildren to hope none get it. Let me know how you are doing. As for the baby, they bring joy into you life and highly recommend it, I only have one daughter, but she is so compassionate, to my disease. She was 4 when it took 8 months to diagnose, in an out of hospitals and test. She is 15 and is a better person for learning, I am trying to get her to be a doctor, nooooooo she wants to be a Lawyer! Take care, laughter is the best medicine and it doesnt cost anything.

Penny

Hi Penny
I think I am doing better with this then I was at first. The Asacol seems to really be working for me now because I have not had any symptoms in about a week. The Asacol is the only medicine that I am taking at this time. They say that they caught it in the very early stages. I have only had one attack and that was in June/July and it was not severe enough to warrant hospitalization. I have been in out as far as taking tests but nothing where I had to stay overnight or anything. So far the disease has only affected the last 6 inches of my small intestine. My doctor said that with proper treatment we should be able to contain it to just that area. He also sent me a free membership to the Crohn's and Colitis Foundation of America (CCFA) so I sent that in this week and they should be sending me a bunch of information. I seem to be Ok so far with most things that I eat. I am OK with Dairy which is good because Milk is my favorite drink and I drink it alot. I do tend to eat a pretty bland diet now. I eat nothing spicy or with a lot of seasoning. I am still in the process of trying to figure out what I can and can not eat. I am suppose to be going to see a nutritionist soon.

I do have one question for you. Do you tell people what you have? So far I have only told my family what I have but all of my friends and co-workers keep asking if all of the tests that I have taken have shown anything yet. I have not told them yet because I wanted to get used to the idea before having to answer a lot of questions. How do you handle it? I know that they are concerned and it bothers me to lie to them but I do not know what to do. Can you help me on this?
Thanx
Lissie

Hi Lissie! My sister has crohn's disease, and has had it since she was 15 years old, which was in the late 1970's. At that time in Europe, doctors didn't know what was wrong with her, and she spent a long time in hospitals, and lost a lot of weight. Between 15 and 18 years of age she was in surgery 2x (because doctors didn't know so much back then), and in her 20's she had a baby. What seemed to help her a lot was an intensive 3month psychotherapy treatment at a hospital with other very ill patients, which provided support groups and eased the coping with being diagnosed with this disease. After several years of traditional medicine, she also tried homeopathic medicine, after being on cortisone for a long time, and wanted to stop it because she thought it wasn't good for her. For maybe 10 years she didn't seek traditional treatment, and, unfortunately, the homeopathic medicine did not help against the inflammation. A few years ago she went back for tests and her intestines were infected more severally. She needed more surgery. My advice to you is not to give up traditional treatment. This could be damaging for you later on. For my sister, unfortunately, it was. She had doctors tell her that they could try control the problem with herbs and homeopathic medicine, and she was more than happy to believe that. Now, it's over a year since her last surgery. She hasn't done very well since then. She thinks, that maybe her body is still healing. She has a lot of diarrea, and has to stay close to bathrooms. But one thing that has always helped her is her positive thinking about her disease. She says, that she can get better and will get better. And, actually, for several years she was doing pretty good. While it's very unfortunate that she is sick, she is lucky to have a great husband, whose been very supportive and emotionally strong to help her deal with crohn's. i wish you all the best and hope, that today doctors know more about this disease to better help you.

Lissie,

I was diagnosed with Crohn's in Jan. '03. I know exactly how you are feeling because I'm in the same situation. It's scary because you have a disease that no one seems to no much about and getting answers can be like looking for a needle in a hay stack. I'm currently having a flare up and nothing seems to help. I'm on Asacol and Prednisone and wish this was just all a bad dream.

BetyKate

I recommend that everyone here look into a probiotic product called Primal Defense. It is easily available online or at any Vitamin Shoppe. The founder of the company had serious Crohn's and was healed through diet changes and the product he helped develop. You can search online and read his story.


I take the product myself for yeast/candida and have been helped tremendously by it. - Al



[This message has been edited by moderator4 (edited 05-14-2003).]

HI BetyKate
I am sorry to hear that you are having a flare right now. I hope that it is not a bad one. I had a minor one myself at the holidays but I have been fine ever since. I am still just taking the Asacol 3 pills/3 times a day. I am now pregnant so I am constantly worried about that as well. I am past the first trimester finally so they say that my chances of miscarrying have severly decreased but I still worry that I will have a flare and that will do something. If you do not mind my asking how old are you? How long did it take them to diagnose you? If you need anything just let me know. It is so frustrating to go to the doctor's and just have them sort of look at you and when you ask a specific question they come back with well everyone with Crohn's is different. So they basically know nothing. I am just glad that I am not going through this alone.

Hi LLR
I just found out recently that my paternal Gram had Colitis for years but no one ever talked about it. Can you believe that? If I had only known in the beginning then I could have told the doctors and maybe I would have been diagnosed sooner. I can not believe that so many people have it in your family. Please keep me informed about you study. I am worried that I am going to pass it on to my baby.

Have a happy and symptom free day.

Lissie

Hi everyone, I have had Crohn's for 38 years now. I have had 2 surgeries and have over 3 feet removed. When I first started I had pain so bad that I would have to be knocked out. After surgery I went 32 years with out pain and then 5 years ago had to have more intestines taken out. I have never taken any medication for it, I guess I was a lucky one. I also got pregnant with my 3rd child with Crohn's and had him ceararen. There was no one in my family that has ever had anything with the bowels. Lucky me. I find that the busier I am the less time I have to think of my problem. I have been over seas 4 times and no problem. I watch what I eat, when I am having a problem, no milk, cheeses, spices, I watch my vegetable to keep down the gas. I am very busy and have a garden with over 500 plants, keeping busy helps. I find bending hard on the intestines and I usually sit on the ground. I went to the U. Of Chicago they have a wonderful department there. Yes, I do have the runs all the time, somedays I go like 25 times and normal is about 10. I also have 3 fissues in the rectum which gives me more problems, but which is part of Crohn's. I don't heal good if I get sores, again part of Crohn's. Any one wanting to write me you are more than welcome. I feel God gave me Crohn's so I could help other people to understand it. Shirley

Hi Shirley
I get so excited when I hear stories about people with Crohn's having healthy pregnancies. I can not believe that you have had it that long. I think that you are a lucky one if you have never taken any meds. I have only taken the Asacol and it seems to be working for me. I also tend to watch my diet but if I want something I do eat it unless I am not feeling well. I tend to pay more attention to my body now then I did before. I am just glad that they caught it at such an early stage for me. Hopefully I will be able to keep it at a minimum since I found out so soon. Those 32 years must have felt like heaven. I hope that I can go that long. I try not to think about it myself. I tend to not discuss it with people either. People know that I was very sick when I had my first flare last summer but it is at the point now when most people do not ask about it anymore so I have managed to avoid having to tell people. I find the less I talk about it the more I can not think about it. I have been worried since I got pregnant but my doctor's have been great and say that everything is progressing fine so I just need to relax. Easier said than done. Nice chatting with you Shirley. I hope to hear from you again.

Lissie

Originally posted by Lissie2414:
Hi Shirley
I get so excited when I hear stories about people with Crohn's having healthy pregnancies. I can not believe that you have had it that long. I think that you are a lucky one if you have never taken any meds. I have only taken the Asacol and it seems to be working for me. I also tend to watch my diet but if I want something I do eat it unless I am not feeling well. I tend to pay more attention to my body now then I did before. I am just glad that they caught it at such an early stage for me. Hopefully I will be able to keep it at a minimum since I found out so soon. Those 32 years must have felt like heaven. I hope that I can go that long. I try not to think about it myself. I tend to not discuss it with people either. People know that I was very sick when I had my first flare last summer but it is at the point now when most people do not ask about it anymore so I have managed to avoid having to tell people. I find the less I talk about it the more I can not think about it. I have been worried since I got pregnant but my doctor's have been great and say that everything is progressing fine so I just need to relax. Easier said than done. Nice chatting with you Shirley. I hope to hear from you again.

Lissie

Hi Lissie, I had Crohn's for 2 years before I finally found a Dr. who knew what it was. I went from Dr. to Dr. and most of them told me it was in my head. I knew better. By the time I got to the U. of Chicago and Dr. Block I was in bad shape. Having small children I didn't want to die and I made a promise to God if he left me live I would do every thing for kids. I also was given 2 weeks to live. I had a 10 Hr. surgery on a Monday and that same day I was up walking and sitting. The next day they pulled all the tubes out of me and I was on my own. I was home the next Monday. This last time I had surgery I was up out of bed the next day walking the halls and by the 3rd day dressed and make-up on. I was home within 6 days. Why am I telling you this? I just want you all to know that to not let Crohn's rule your life, it didn't or doesn't. If I have to find a bathroom so be it, I find one. I have been all over Europe, drank my own water, watched out for spicey food and got along fine. When people hear me say I have a disease that can't be cured, they can't believe me. You must keep yourself busy and not think about it. Right this minute I am hurting (fissure) and I have to watch more so what I eat. One of the biggest problems I have is Potassism. When that get low, I start from the legs on up aching. Then I know I have to take some. Since my system works very fast, I can't take any time pills. No coated ones either. When I go out to eat most of them time, my salad is coming through me with in the hour. (floating in the john). Way over after of my life I have had Crohn's and you learn to live with it. Hope I have given you all some hope. God bless you, Shirley

Hi all, what an amazing thread this is!

Lizzie, Catmama, or anyone else who has a Crohn's Diagnosis, can you please tell us in more detail what your beginning symptoms were?

Thanks so much for sharing all your stories.

God Bless
A

[QUOTE]Originally posted by andyM:
[B]Hi all, what an amazing thread this is!

Lizzie, Catmama, or anyone else who has a Crohn's Diagnosis, can you please tell us in more detail what your beginning symptoms were?

Thanks so much for sharing all your stories.

God Bless

Hi everyone, I think that this is a wonderful site, that we can help each other. This is why I have said that I feel blessed that God choose me to have Crohn's to help each one of you.

You wonder what things were like for me from the beginning! I stated out with either constipation or the runs. Also on my right side I would have very bad pain. I went to about 5 Dr. and was in the hospital and had every test they could think of. Finally the one Dr. told me what I had but he wanted to remove all my intestines. Since I was then only 28 I said no way. As the fall came I had a lump on the right side and the last meal that I tried to get down was potatoe soup and the intestines were being chocked off because of the big abscess that was around the intestines. My right kidney had also stopped working because of the abscess. When the last month I had lost 30 lbs because I couldn't get any more I picked up the phone and called the U. of Chicago and within a few days I was in the hospital. Again I went through every test and was there for 3 weeks before surgery. My husband and folks were told that they would give me no more than 2 weeks to live had I not had surgery. For me the pain was so bad, I could never explain how bad, I would just knot up in the pain. Once the bad part was out of me, I was on the road to getting well. A year later my father died and had cancer of the intestines due to a accident. My mom was very worried how I was going to get through every thing but I was really able to help my dad with the pillow on the stomach when he coughed, etc. In spite of everything I still feel lucky that I haven't had to take any medication because not everything, sets good with me, like vitamins. If you people are having a rough time at sometimes, switch to potatoes, squash, carrots and beets, they will not give you gas and really help you. Stay away from ketchups, mustards, pepper, things like that. I don't drink milk because it will upset me, also no ice cream, only white cheese. Watch the bran items, you want to keep the intestines quite and not moving. Hope I have helped some of you. Remember DON'T GIVE IN TO CROHN'S. Put on more makeup when you feel the worst and when you look in the mirror you will look better and you will feel better. Be good and watch what you eat and have a good weekend, I am going to a plant sale tomorrow and then I have about 50 plants to plant on Sunday. Shirley (catmama)

Hi All
Shirley - You are truly an inspiration. I can not believe that they do not have you on any meds at all. I only take Asacol which is the weakest one but still I am on them.

Andy - When I first got my symptoms. I was just tired and I started having more frequent and loose bowel movements. I would eat and then about an hour or two (depending upon what I ate) I would get these awful cramps. I also lost 20 lbs in 3 weeks. I just could not keep anything inside of me. I was very tired and run down also. I could not seem to get enough sleep and I had no energy at all. So far that is the only episode that I have had but I felt really bad for quite a long time. What are you symptoms? Do you mind telling me a little about yourself? Maybe I can help.

Good Luck

Lissie

Hi Lizzie.

Thanks to you all for sharing your stories. I learn so much from you guys. Shirley you are an inspiration. I wish you were my neighbor

I am a 30 year old female that has suffered from abdominal issues for over 10 years. I have been diagnosed with IBS about 10 times in that period. More recently I have seen 4 Gastroenterologists, all who also say IBS. I have had all kinds of blood tests, Ultrasounds, CAT scans, etc. All negative.

My symptoms seem to change quite a bit, and come and go. I was in "remission" for years, then this past 13 months have had symptoms all over again. Here are my symptoms:

-chronic dull cramping ache in lower intestines (abdominal) in left & also center. This can last all day for days. Comes and goes. Very hard to describe the pain, it seems to change a lot.

-feeling of heaviness in abdomen, MAJOR bloating, gas

-often times have abdominal cramps usually associated with diarrhea, but do NOT have diarrhea. Just have the pain and cramping and a regular bowel movement. When this occurs, it is in the morning. This can change too. Sometimes the pain comes AFTER the BM.

-When I lay down, and press on my left side (lower, about an inch or so under belly button but all the way to the left), I can feel a lumpy knot, long and narrow on the left side feeling hard and ropelike. Also, sometimes when I push in it there is pain or pressure. Not severe pain, almost like a pressure pain and tenderness.

Again, I have no diarrhea or weight loss. The doctors say maybe I am constipated since I rarely get the urge to have a BM ( even though I go every day--I have to force myself most of the time).

I am pretty frustrated and at my wits end. I am exhausted all the time (fatigue!!!!) but I dont know if this is from IBS or my Fibromyalgia.

I keep going to new doctors hoping for a different diagnosis other than IBS. Its so hard for me to think I have something they "cant technically diagnose". And I dont have the diarrhea, which I see many people have with IBS, so I wonder if theres something else. I dont know how many more doctors I can see. I think there may just come a point where I should just say "Ok, Its IBS, now I have to find out how to live with it."

I dont know. Anyway, I realize I just vented. I am sorry. For anyone who made it to the bottom of this thread, thank you. I would offer you a cookie, but most of us either cant tolerate the dairy, oils or fats. LOL http://www.healthboards.com/ubb/smile.gif

Hi Andy
I am a 30 year old female myself. I will be 31 in a couple of months. I did not really start to get any symptoms until right before my 30th birthday. I probably would not have even gone to the doctors or anything but I was trying to get pregnant so I wanted to make sure I was healthy. I have had many tests. Have you had a colonoscopy, upper endocopy or Upper/Lower GI tests done. It was the Upper GI test that found the Crohn's in the last 6 inches of my small intestines. My symptoms seem to vary as well. I know what you mean about the dull cramping in your lower intestines. For me that was where the last 6 inches were inflammed from the Crohn's. Once they put me on the Asacol that pain went away in about 3 weeks and has not really been back since. I have days when I feel as if I could be on the verge of an attack so I just watch what I eat and I am extra careful. I have not had a colonoscopy yet but that is only because I am now pregnant. I will have one done once I have the baby to make sure that the Crohn's is not in my large intestines as well.

I had the heaviness in my abdomen and the major bloating and gas. I never felt hungry at all and used to have to force myself to eat. Do you find that certain food make you more uncomfortable then others. My doctor told me that if I find myself having an episode coming on that I should fast for a day and just drink water. Then for the next couple of days I can add Ensure and Gatorade to my diet. Then if that is going OK I can slowly start introducing food back into my diet like with soups etc. This worked for me the one time that I thought I might be having another episode and I never did.

If you have not had a colonoscopy or an Upper/Lower GI test done then I would ask your doctor about them. That is how I was diagnosed and once you have those tests that should let them know if you have Crohn's or exactly what is going on in there especially if you are having that pain and feel that lumpy knot. Please let me know how you are doing? I am glad that I have someone my own age to talk to about this. I never thought in a million years that I would be diagnosed with a chronic disease when I was 30 it just makes my life seem so long now knowing that I am always going to have to be dealing with this and that it will never go away. It is always in the back of my mind especially whenever I eat anything.

Good Luck!!
Lissie

Lizzie,

First of all, I want to take a second to say thank you for talking to me too. I dont have people to talk to about this, b/c if they arent going through it, they dont understand. First of all let me answer your questions.

I Have not had a colonoscopy, because the 4 Gatsroenterologists I have been to do not think I need it right now. They said my symptoms along with my other tests I have had are not indicative of Crohn's or IBD. Trust me, I have completely pumped all my doctors for info bringing up everything from Crohn's, colitits, diverticulitits, etc. They all say that my symptoms are not indicative of those, and my test results show no "red flags" that would point to them.

As far as the left side pain and tenderness and lumpy knot, I have asked all the doctors to feel it, as well as my Gyno and GP. They all say the same thing basically: It si Normal. It is my sigmoid colon, probably sluiggish and backed up so it is a little dystended which can cause the tenderness. They also say it is b/c I am thin and can feel my organs more than some. You would think that after an abdominal CAT scan and 10 doctors telling me its nothing to worry about, I would relax about it. I DONT. LOL.

You asked me if I find certain foods make me feel worse. I have had a hard time finding any specific triggers in food. I can eat something one day and I think it is the cause for my pain, then eat it again the next week and have no problems. I am beginning to think it may be more the SIZE of the meal and the speed I eat it rather than the content. The only thing I have been able to say I think gives me problems is carbonated sodas. I have not lost my appetite at all, and my weight has been the same give or take 3 pounds.

The thing for me is, Like i mentioned previously, I have been having some sort of bowel issues my whole life. I went through a period of diarrhea alot with certain foods back to constipation when I was in my early twenties. The last few years had been more a constipation thing. Then I was actually ok until this started. Its almost like I was in remission and something triggered the syndrome up again, and it never settled back down.

I have some questions for you if you dont mind?

Did you have ANY bowel symptoms at all? I know you said you had pain, but any diarrhea? Did BM's relieve the pain?

What foods bother you? What happens when you have the attack exactly and how long does it last? Are you incapacitated? can you function?

Did you have blood work done and did the doctor mention anything in your blood that made them suspect crohn's? (Ie. red blood cell anemia, sed rate, etc). What did the doctor say was the reason for the weight loss?

Thanks again for talking to me. Its nice to find someone my age going through health issues like this. I wish I could just get to a point where I could trust my doctor and live with it. But I have nothing that gives me relief from the pain really, so I would almost rather have something they could TREAT.

What is Asacol? Is it for pain? Do they give it to IBS-ers?

Thanks again Lizzie. When is your baby due? http://www.healthboards.com/ubb/smile.gif

Hugs
A

Hi Lissie,

Sorry to get back to you so late. To answer some of your questions, I'm 24 and will be celebrating another birthday next month! I wasn't actually diagnosed until January of this year, but the problems didn't start until after a car accident in July of last year. Apparently the accident aggrivated it.

I think I'm slowly getting through my flare up by my GI doctor wants another CT scan just to make sure I don't have any adhesions. She's concerned only because the my Prednisone helped as much as it should have since I increased my dose. Lately I've been taking it easy at my job and working on keeping stress down. I feel a little bit better everyday but I try to remind myself I'm not better yet. I've also got an dietary consultation so I can learn about foods that might cause problems more than others. I kind of understand that everyone is different, but I'd still like to educate myself when I can.

I really like the GI doctor I see now. The first one I saw told me I had IBS. It wasn't until I got a CT scan that he realized I much sicker than he thought. My doctor now is very straight forward but not "in your face." She has a very calm, settling manor about her. She doesn't make me feel like I'm going through this alone in a doctor/patient relationship. She always reassures me that I can call her (especially on weekends) if I have any trouble.

Congrats! on the pregnancy. I thought my husband and I were finally ready to start trying and then my health (with Crohn's) became our number one concern. Keep yourself calm about the pregnancy. You said yourself your chances of a good pregnancy are better now after the first trimester.

Thanks again,
BetyKate

My Heart goes out to all of you suffering from Crohn's Disease. I have a question about the disorder?

Where do you feel pain with Crohn's, and is rectal bleeding a sign of Crohns.

I recently had a colonoscopy and the doctor told me he couldnt get to my small bowel, is crohns disease located in the small bowel? I had the scope because of rectal bleeding (bright red) and I also get pains in my lower guts sometimes the pain is very unbareable.

Thank you for any input, and good luck to all of you!

John

John.
Crohn's usually starts in the last past of your small intestines -- the section called the illium. Did the doctor tell you where the blood is coming from--- hemorrhoids???

The pain you describe sounds like colon spasms or cramping. What diagnoses did the Doc give you after the scopy test?

Harry

Lissie,

To answer your questions, I'm 25 (today's my birthday) and it took them a few months to determine it was Crohn's I'm suffing from. My symptoms didn't start until after a terrible car accident almost 1 year ago. I had to have my appendix removed a few months after the accident and that't when the surgeons caught the first glimps of my problem. Before the accident I was normal, no problems ever. Since then, it's been a battle. I think I'm past the flare up, if that's what it was. I've recently had to endure another CT scan to check for blockages in my intestine and that sent me to the Radiologist for a small bowl follow through. I won't be able to see my GI doctor for another few days because she's out of town, but through previous discussions she mention surgery would probalby be the outcome now. My abdomen has been swollen for over a month and I'm in constant pain (cramping in the abdomen where the food is trying to move through). I pray surgery will help and I can get this taken care of asap. I need to get back to normal for myself and those around me.

Thanks again for listening,
Betski

Harry, when I got my colonoscopy the doctor didnt tell me much. He did the scope and left the room. I had to ask the nurse my results. Then i had to leave the hospital 30 mins later. The doctor booked me to drink barium to examine the small bowel. I had severe cramps a couple years ago below belly botton from the right to left sides. The pain was unbarable, i couldnt walk. But the pains stopped
. Now I have bright red blood occasionally. I have no pain either. I suppose the doctor would have told me something if i had cancer or something. Next week i get the xray, and I book an appointment with the doc 2 weeks after that test.

You can take a look at http:\ibd.patientcommunity.com for more info.

John - Crohn's can affect anywhere from your mouth to your anus. Severe cramping and then bleeding can be IBS or IBD. If your stools are foul smelling, and/or elongated, this sounds like IBD. Crohn's will effect the mouth and/or esophagus usually in severe cases only. Does the cramping and/or bleeding happen with certain foods or when under stress? You may want to watch for any correlation.

Thanks for your reply giupset. The pain happens off and on, it is usually triggered when I have eaten a lot of meat, such as hamburgers, sausages, etc... My stools 50% of the time are thin. I rarely have diareah, maybe once every 1 or 2 months. I usually get the rectal bleeding when I am constipated, or when I have to push really hard. I do get constipated often enough and my diet isnt the greatest. I do feel pain in my anus when I make bowel movements.The rectal bleeding has come off and on. I havent had bleeding for the last month. But when I comes it lasts for 3 days up to a month, then disappears.

I am just wondering why he is refering me to get barium xray (drink). I am 22 years old, slim build, no weight loss. No known IBS or CC in family history.

Thanks

Hi everyone, with summer here I haven't been back to your page for awile. My daughter sent to me a email yesterday that I hope everyone will respond to. There is a bill in Congress HR 290 that wants Center for Disease Control and Research to help out IBD people. Everyone needs to write your Congressmen and tell them to vote for this bill. Go to this site on the web. Please it will help all of us. I even told them I would be happy to come to a hearing and talk to the Congress. Since I have had Crohn's for 36 years and the 2 surgeries I would be a good one to talk for all of us. Here is the site to go to: www.cafa.org/news/ibdactionalert.htm (http://www.cafa.org/news/ibdactionalert.htm) Very simple to do.. Shirley (catmama)

Originally posted by catmama:
Hi everyone, with summer here I haven't been back to your page for awile. My daughter sent to me a email yesterday that I hope everyone will respond to. There is a bill in Congress HR 290 that wants Center for Disease Control and Research to help out IBD people. Everyone needs to write your Congressmen and tell them to vote for this bill. Go to this site on the web. Please it will help all of us. I even told them I would be happy to come to a hearing and talk to the Congress. Since I have had Crohn's for 36 years and the 2 surgeries I would be a good one to talk for all of us. Here is the site to go to: www.cafa.org/news/ibdactionalert.htm (http://www.cafa.org/news/ibdactionalert.htm) Very simple to do.. Shirley (catmama)