Need help

[Mary789]

Hello. I know that no one can diagnose me, but I just need some advice. I'm 18 years old and in my first year of university. For the past two weeks I've had blinding pain in my lower abdominal area with a general dull ache everywhere else. The sharpest pain is directly behind my belly button and down the sides. After the first week of being in pain I went to the emergency room where I made the mistake of telling the doctor that I have a family history of IBS and have been informally diagnosed with it myself, so he waved it off as being that and prescribed me medication for the bowel spasms. The medication only worked slightly but by the end of the second week I couldn't eat anything and even drinking water caused too much pain. This past Thursday I saw the campus doctor who also just waved it off as IBS and wouldn't give me any medication to deal with the pain. She didn't seem worried even though I burst out crying when she said those dreaded words: "It's just IBS. You'll be fine." Dehydrated and feeling faint, I went back to the hospital the very next day and they did blood tests and a urine test which all came back normal, but they put me on IV to stabilize me. The doctor suggested that I stick to a clear liquid diet. Today, I went for an ultrasound which came back normal so there's no big problems in my organs and I have a barium enema sometime next week. I have a friend with one of the worst cases of Crohn's in Canada and he said that I might have it (all doctors I've seen so far have also cited Crohn's as a possibility). I just need some peace of mind. No one I talk to can relate and all the doctors I've seen seem to underestimate the pain I'm in. I'm already slipping in school because of this, which I hate because I can't risk missing classes in university. To top it all off, my parents are fairly far away so I'm dealing with all of this on my own and it's really starting to wear me down. Sorry for the long post, I just need to vent and hopefully someone can help me out. Like I said, doctors are assuming this is IBS but haven't done anything to rule everything else out. I've had IBS since I was a kid and this is the most severe pain I've ever been in, leading me to doubt the IBS excuse.
Thanks

[Tuffy4u]

I cant believe I have finally seen sombody else with the exact symptom or at least one that was a mystery to everybody but me. The urge to go but nothing comes out. For me, it felt like a contraction to the extreme with pressure bad pressure and then yellow,ish mucus and very bloody blood. No stool what so ever. I would go weeks without one single sign of poop (sorry) just blood and etc. I would sit on the toilet for an hour sometimes and the whole bathroom would smell like blood. I was so paranoid that I thought people could smell blood on me even though I am neurotic about cleanliness. Sorry for going on about gross symptoms but if I had a place like this to go to back then, It would have been such a comfort. I feel so alone because nobody I know has Crohns. I dont fit the description of most other Crohns victims, I get bigger and bigger with every flare because of steroids. Cant even take them anymore because it finally gave me diabetes and I became pshycotic before my doctors realized what was going on with me. Is there any decent GI Dr.s in this world. I mean I think that they go into this field like a great booming money making business and all they have to do is press on your belly , give you some drugs that dont work and collect the money that this disease is draining us. My word, I am negative. I apologize to everybody that reads this. I have been so sick for so long and nothing works for me anymore. Get well please get well all of you. It breaks my heart thinking of you young ones dealing with this. I wish I could comfort you some way , some how. Good Luck and may God Bless you with a good Dr. and a healthy colon soon.

[powderprincess]

Hi Mary......just read your post's. I know what you're going through as I have myself gone through the same thing. I was diagnosed with IBS back in 95 and was put on a special diet but it didn't work and I continued to get worse. My weight was down to 82 pounds and I was hospitalized numerous times. I pushed for more tests and another doctor, finally I was told I had Crohn's. Now that my diet is regulated I have gained weight but still have relapses periodically.
I know what you're going through, I felt like I was nuts and no one believed me. Diet is important. Try staying away from grains, seeds, nuts, tomato based foods and citrus. What works for one doesn't work for the next. I also can't tolerate dairy......
I wish you luck but hang in there. It was a long road for me but today knowing what I can and can't eat has saved my life.
Keep logging into this site for information, people will help in any way they can. Sometimes I think IBS is a cope out for doctor's.
Take care Mary........
Val

[Mary789]

Hello again,
I'm wondering if anyone can help me cope. Today I found out that I have to wait another week for the barium enema (the x-ray machine is broken, apparently) which means another week of a clear liquid diet, pain, and diarrhea without knowing why it's happening. This week I've been experiencing yellow watery diarrhea which I guess would be caused by the liquid diet, but along with this I now have fecal incontinence which horrifies me the most. I'm really losing hope now as doctors don't seem to be too concerned about me (they ask if I vomit and when I say no they basically dismiss me). I'm wondering if this all sounds like an inflammatory bowel disease and how long it took people on this board to be diagnosed with Crohn's. I really appreciate any help I can get because without exaggerating, I really am coping with this alone which is starting to wear me down.
Thanks

[Mary789]

Thanks for the tips. I'll definitely ask for more tests even if the barium enema comes up normal. I can't live like this, it's so draining. I've told every doctor I've come across about my inability to eat or drink and they all scratch their heads and don't offer any advice. Actually, my campus doctor told me to eat yogurt and a lot of grains. Both sound horrible to me and I refuse to follow that advice. I have this faint hope that this'll all disappear soon, but I'm realizing that it may be here to stay, which is very scary. I hope I get some answers soon so I can get figure out a plan.
Thanks for your help.

[lizziecee]

I just don't get IBS  diagnosis... at all. It is a catch all from ignorant and lazy doctors. You need to get an upper endoscopy of your small intestine and a colonoscopy of your large intestine. I have had Crohn's for some 37 years, dx when I was 24 yrs. I belong to a local Crohn's and Ulcerative Colitis group and we now have children as young as 6 yrs being dx with Crohn's.

Crohn's can present very differently - I had severe weight loss and diarrahea, but no pain. Others have severe pain and no weight loss. The only conclusive diagnosis is endoscopy/colonoscopy with biopsies.

Can you get Frutijuice from your physician? I got breast cancer 4 years ago and had to stop my methotrexate (a chemo drug)  to have FEC chemo. The hospital sent it to my home and I lived on this nutritional supplement for 4 months. I had to drink 3 cartons a day, 300 calories each, and it kept me alive. You really need good nutritional supplements - I could not even eat home made vegetable soup with all the solids strained out without going to the bathroom after the first mouthful.

Please see a gastroenterologist, get proper tests, and get well.
Take care,
Liz.

Liz.

[Mary789]

Thanks for responding. My bowel movements have become irregular in the past two weeks. Sometimes I'll go a couple days without having one, or I'll have a day of diarrhea (which has a lot of mucous- gross, but I'm sure you understand). Other symptoms include exhaustion that doesn't seem to be helped with sleep (I felt exhausted even when I could manage to eat), joint pain, achy muscles, and just the general feeling of my body turning on me. It seems that no matter what it is, the second I put food or drink in my mouth my body goes into defensive mode. The other day I had a vegetable wrap for dinner (my only meal all day), and halfway through the wrap I had to run to my dorm and experienced watery diarrhea with quite a bit of mucous. This dealt with some of the pain, but I was still in piercing pain afterwards. Also, I have times where I have the urge that I have to go to the bathroom any second but the majority of the time nothing happens. I'm becoming desperate for help and now deal with fleeting moments where I want to leave university to figure out what's happening. Unfortunately, I don't get to see my family doctor until Christmas, but even she has always brushed off my problems as being IBS without ever really diagnosing me. I can deal with pain, but I want to get back to a place where I can eat again. I don't know how long I'll last on juice and vegetable broth.
Thanks

[vc7881]

Hi Mary,

I'm so sorry you are in such pain.  I too was diagnosed with IBS for almost 30 years.  I didn't have to terrible amount of pain, just mainly the big "d".  Some cramping but nothing that was unbearable.  Do you have any other symptoms?  When you have a bowel movement does that relieve the pain?  I found out last year that I have both IBS and Crohn's and I still have a hard time figure what symptom goes to what problem.  It might take awhile to sort it all out but you are your best advocate.  Make sure thet rule out Crohn's before you settle for the IBS label.  I lived with IBS because I just thought it was unexplained "d" and ended up having to have a resection because Crohn's wasn't discovered and treated.