New Patient

[jrennie]

Hi Guys! I'm new to the forum. I'm a 23 year old female from Canada. I was hoping to maybe get some advice from people who have an IBD themselves. Sooo.. For approximately two years I had stomach cramping and pain that didn't seem to add up with any type of food or anything, it appeared to be random. Over these two years I whined to my doctor and he gave me anti depressants and attributed it to stress, when that didn't worked he tried ibs meds. This did not work either. Over these 2 years I was able to begin associating the pain with food sometimes such as pea pods, most raw veggies, certain salads, bacon, fatty pork, steak.. Stuff like that. Anyways the pain and frequency of these "events" increased over this timeframe, and these episodes almost always resulted in runny stool, stomach pain that was sometimes so bad I couldn't stand up straight. I went and saw another doctor who sent me for a colonoscopy finally and this showed Colitis, not ulcerative, just colitis which according to me doctor could be anything so she can't make a diagnosis. Since this scope earlier this year my stomach has smartened up off and on. However, I'm getting mouth sores in my mouth (always before a stomach pain/sit in the bathroom for hours episode happens), I have gotten shingles, I have a chronically low platelet count, high RDW count. CRP and ESR showed nothing. So because she was unable to make a diagnosis she just started me on Asacol 3200 mg a day, and the only thing this has done is make my hair fall out. This doctor is not a gastro, just a doctor who deals with most ibd cases because we don't have a gastro in my town. My question for you guys, is does this sound ibd related, should I push this farther and ask to be sent to a gastro in our large center nearby? I'm really frustrated nothing is getting better and none of the doctors seem to have any answers.. Just hoping for some thoughts from people who actually have either of the diseases. Thanks in advance, sorry this is so long!

Jrennie

 

[EthanPSU]

Hey Jernnie, First off it does sound like crohns or IBD, I would for sure push to go to a GI in your nearby city. It will for sure help and if you are in constant pain and trouble, your doctor now obviously is not as experienced. Asacol is used to treat this but it could not be all you need. Maybe more members will give you more insight.

For now, this place is a good place to look around and research on the disease. If you have any more questions feel free to ask

 

[Trysha]

Hi Jennie
Sorry you are having a difficult time of it and hope things will get better.
Definitely push for a GI specialist this IMO should have been done a long time ago.
A GP is not a gastroenterologist and may not be trained in the same way.
It rather sounds similar to the symptoms of IBD -- crohns and needs specialist attention and treatment
Feel better soon
Hugs and best wishes
Trysha

 

[jrennie]

Hi guys! Thank you for your thoughts and well wishes! Basically this doctor I am seeing right now is an internal medicine specialist but not a gastro, so maybe I will have my family doctor refer me to a gastro and hopefully that gets me somewhere! Is it normal for me to feel good then bad off and on? Sometimes its days between sick stomach days and at one point I had no symptoms for a few months then they returned all of a sudden again. This doctor I am seeing is so busy she doesn't have time to answer questions its like a 5 minute appointment, she gives you drugs and kicks you out...

 

[carrollco]

I've had Crohn's off and on throughout my life though the first 20 years they said I had irritable bowel. Then, five years ago, I started getting really sick with cramping, diarrhea, nausea. First it was once in a while, then it was once a month, then it was once a week, until it was all the time. Because I'd always been told this was irritable bowel (no one ever did any tests) I let it go. When I finally went to the docs I was anemic, sick, and miserable. So the answer to your question is, yep, it can come and go...

 

[Gculk]

By definition it is IBD you have colitis (inflammation) in the bowel, and it is causing you dis-ease! Inflammatory bowel disease.

Crohn's or colitis, hard to tell without a biopsy or other confirmatory tests. My limited understanding is that they should start on a tough drug starting off to get the inflammation under control, then work their way down the spectrum to stuff like asacol. Ask about prednisone if you aren't having results next time you see your doc, prednisone, while it has some apparently nasty side effects, is pretty much the boss hog when it comes to getting inflammation under control.

That said, if you really don't think your doc is all that and a bag of chips, get a meeting with a GI from out of town. Listen, if you're suffering for 2 years, what's a few hours drive to get some real quality medical jargon?

I'm in the whole IBS/it's all stress loop now. I had an eight month break, sorta like you, and have (tragically) been in three months of flare without a 5 minute break where I've had no pain. My doc at least doesn't kick me out in 5 minutes though. She lets me complain for ten or fifteen minutes before giving me drugs (anti-depressants, not even the type used for IBS, this time around) and shoeing me out.

Best of luck, hope you feel better,

In your old boat,
Nathan

 

[FriendoftheKiwis]

Hey welcome to the site. Sorry to hear what you are going through. :[

I have Ulcerative Colitis...not too sure what just plain colitis is. But, I can relate in that certain foods make it worse, especially raw veggies. In our case, raw veggies are bad because of the fiber. This seems counterintuitive because fiber is supposed to be good for the colon. But that only applies to healthy colons.

Also, it definitely comes on and off. And not only in the length of a few days or even months, it can be a few hours. Like, right now I am perfectly fine. I have no pain at all. However, in an hour or who knows, ten minutes, the pain shoots back and it is unbearable sometimes. Definitely awkward when I am trying to walk around and all of a sudden its paralyzing and I can't move or stand up straight.
I am guessing this is due to the inflammation of the colon or intestine, especially when you are digesting food. That is when the pain comes on.

Try to see a GI doctor. They usually know the most! Let us know how it goes :]

 

[Gculk]

Kiwis: Colitis just specifies inflammation in the colon. It doesn't specify a disease type or cause. That requires diagnostic test such as biopsies.

For example, say I have Colitis. I could have drunk a whole boatload of caustic chemicals which would cause colitis (Bad idea, don't ever do that. Just sayin.), or I could have ulcerative colitis causing colitis and ulcers, or I could have Crohn's colitis, or I could have infectious colitis, or any other colitis cause.

 

[FriendoftheKiwis]

O got it that makes sense. Hopefully you find out what exactly is causing that! :\

 

[FriendoftheKiwis]

guilty!

 

[Jim (POPS)]

jrennie and Friendofthekiwis, I have seen post from Friendofthekiwis before but jrennie this is my first to you. I'll tell you both my story in short, same thing for me, althought it lasted over 10 years, very minor at first, the first 8 years with some weight loss, but the last 2 years the pain and epasodes became closer together until I was having pain after eating every morning about 1 1/2 hours after I ate. Sometimes the pain was really bad but would go away in about 10-15 min (the real bad pain) but I had dull pain alot of the times. I didn't do anything as far as going to the Dr. until I lost 20lbs the last year. They did a colonostopy and said they saw something on my apendix and it needs to come out, but they also said that I had some inflomation in my colon but for the most part it looked good. kinda like you Jrennie, they said it could be IBS. long story short, I went in to have my apendix taken out and woke up in the hospital and they said that they did a small bowl resection because they found a NASTY mass of crohns in my iliem. I'm not spelling that right but it is the lower/last part of your small intestine, they also took out a part of my coon as well. in total about 26cm. Now remmber I let this go on without going to a Dr, and when I did I went to a GI Dr. I was in the hospital for 5 days and went hove and after 2 days at home I saw my wound was seeping something that looked lie water, so out of caution I went to the ER and a god thing I did, the resection came apart and my stool was filling my insides, they call this septic shock, and it can kill you. Now I'm really not trying to make you scared, I meen that, but when they do a operation of some kind and all of a sudden have to do a small bowl resection and the serguion is a generl one and not a Colonrectal serguon they do the best they can. I did stay in the hospital about 3 weeks after this operation and lost about 25 more lbs. Lie I said PLEASE don't take me wrong, this does not happen to very many people. 1) I'm 61 years old, had diarrea for about 12 years and did not make much about it to the Dr although I had went from about 185 to 140 over the years, so most of it was my fault. What I'm trying to say is, you have to be ro-active with IBD and go to a GOOD GI Dr. Tell the Dr. what you expect of them and tell them your quality of life is getting worse day by day. If they are no help find a NEW GI Dr. Also, I found help by going to a web-site that has IBD advocate's that help you one on one for no cost at all. they educate you about IBD and call you all the time to see how you are doing. Mine in named Koy, she is wonderfful and I'm telling you the truth that they have never tryed to sell me anything AT ALL> matter of fact I ask Koy about, what is the catch and she told me. It is agnest the law for them to try and sell anything to you, they are from a drug Co. Abbout it think and they do make ALOT of the drugs that are used to treat IBD, BUT the truth is, I AM SO GLAD i WENT THERE AND NOW HAVE HER ON MY SIDE. She helps me learn how to talk to my Dr and not to be afread of IBD. there web-site is www.crohnsOnline.com. what you do is regester and they will call you and they begin helping you right away. I have been working with Koy for about 7 months now, it;s real nice to talk to someone that understands and is on your side to give you advice of new meds and new test. I can't stress how much she has helpe me. Everytime I get off the phone with her I always feel better, you know how we can be stressed out about IBD, they can help you take the guess work out of it and help you have a ro-active plan to get yourself better. OOOOOO when I ask her "What is in it for you" she said" She loves her job, witch is to contact people and educat them about IBD, the stratagey that there Company has is, there is a chance that a person with IBD will end up using one of there producks but they do not and cannot talk to you about any items they sell to Dr. for treatment of IBD. It's a WIN WIN for us. and it's nice to have a phone # of someone that knows ALOT about IBD that you become friends with and you can call them anytime you want and they really make you feel like they are really on your side. Now with that said, you may think that I get something for this. NO NO NO< NADA. I just want people like you to have the same support that I have. It's wonderull. Try it and see. If you don't lie it you can tell them to not call you again and they will never call again. Koy has told me that. Good luck and I hope you take advanage oif this support. Pops. It's helped mr SOOOO MUCH Koy's phone # is 1 818 237-6352 her last name is Parada Tell her Pops gave you her phone #, she will LOL, we are really good friends now.
Pops

 

[carrollco]

*hand wave to Jim* Another Californian! He's so right. I ended up with sepsis. (I didn't want to go into detail and scare you.) I probably should have though. Crohn's is nothing to mess with. I, too, have an advocate though the drug company that sells Humira (which I'm on). She is awesome. My health plan also has an advocate for me--though I'm a Hep C advocate (lost two family members and now have a third with the disease) so I know how to work the system. The thing is you need to learn how to advocate for yourself too. No one knows how hard it is until you have to do it for yourself. Denial is my second name.

 

[Hobbes650]

Hi jrennie!

Good luck with getting this thing figured out- that can be the hardest part. It sounds like you don't have any kind of ulcerations, just inflammation, is that right? IBD cannot really be diagnosed without the presence of some ulcers inside. Irritable Bowel Syndrome would not cause any ulcerations. I use an internal medicine doctor for my primary care, but not to treat my illness. I think with IBD it's imortant to see a specialist to get things figured out first. My internal medicine doc though, is great for chekcing other things, and IBD can lead have some really odd symptoms- like joint pains, and eye issues to name a few. Good to have both kinds of docs on your team.

Hope you feel better soon!
Hobbes650

 

[Jim (POPS)]

carrollco, whats up. thanks for backing me up on this. it sounds like she has a minor to mod case right now but you and I know we have to keep a handle on it or it can blow up in your face big time. Glad you talked about a advacate, is your from Abbout? mine is and as I said her name is Koy. She is so cool, and keeps me up on everything. it's like having a best friend that knows ALL about crohns or colitis and they REALLY HELP YOU OUT I love talkng to her and we talk at least every week if not more, she always calls after I went to any kind of Dr. to see how I'm doing. most of the time she is helping me deal with the stress of crohns and keeps telling me that I will make it through and not to freak out. Does yours ever try to talk about selling you anything. I know the anwser is NO, but I want the people hear to know that for a fact so they will get one to help them. To tell the truth, I don't know what I would do without her. The best defence for IBD is learning everything you can about it, thats for sure. The more you learn, the less you suffer, because about 50% of it plays with your mind telling you your in a **** load of trouble and what not and if you can keep your head together you do better in your body as well. PLEASE, PLEASE, PLEASE people, if you don't have a advacate, GET ONE and you wil see it is a win win.
Boy, I know I didn't handle going septic very well, lost alot of lbs and took me about 3-4 months to get to about 70%.I'm at about 90% right now, just sleep alot, might have so adsorbtion problums, I think I need to have some test done to find out. BUT when they put me back together that will be much better, they only took about 10cm of my ilium. NOW I'm going to have them put be back together kinda like Hunpdy Dumpdy LMAO, and the last thing I want is to go through that again. I was in very poor health when that happen and they expected to only take out my apendix, this time I am much more healther and the Dr has done a TON of pre OP test to make sure everything is good. My CT doesn't show any crohns and my beream enama was good with no fisulas and no leakage and the Dr. said that my colon look to be normal. I see him on the 10th, next monday and I think he will want to do a colonostomy just to see for his self. This guy Dr. Sammuel Oommen Colonrectal serg. from Concord Ca. One of the best in Ca. BTW, I see that you also live in the Bay Area. My Dr, is the head of Bay Area Colonrectal sergery. He founded it in the 80's, he is 61 years old and is very well respected. If you don't like your sergion, Google him and check him out. He will take new people. A little story behind him. as I said he is 61, well about 29 years ago my wife came up with colitis and they removed her colnon and she got a "J" pouch, she had a sergion named Dr. Palmer from Kaiser and he a 3 other Dr, were some of the first to do the "J" pouch op way back then and did alot of the research about that type of op. well , Dr Palmer was the head of colon sergery for Kaiser and is now 80 something and is retire but still does research and speeks at conferances. When I told Dr. Oommen that my wife also has a ostomy bag now (the J pouch only last about 20 years because of scar tissue and you start getting blockagaes) Well, Dr Oommen said that Dr. Palmer was his mintor for the first 15 years after school. What a mind blower, they BOTH travel to conferancess together and speak all over California, but most of the time in the Bay Area because Dr Oommen WANTS to still practice and help everyone he can. As he says it. I've been blessed to be around the best of the best so I owe it to the people to stay doing operations until I get much older and then he said he will go to research and giving presentation only. What a wonderfull Dr. I am so blessed.
I'm glad I met you on hear. send me a friend request and lets stay in contact. Pops (JIM)

 

[afidz]

Hello!
This definetly sounds like some type of IBD and you really need to go to a GI, even if you have to travel to do so. It sounds like your illness is very serious. I don't know very much about UC, but I know that Crohn's can kill if not treated. (don't mean to scare you)
As far a food guide, I avoid anything with alot of fiber like broccoli, celery etc. I don't eat citrus nuts or seeds. Oh and Yogurt is like my miracle food. Yogurt has a lot of the good bacteria in it that helps your stomach fight off whatever its got going on inside. I usually get some relief within a day or so when I eat alot of it. There is light at the end of the tunnel, when you do get your disease under control you can eat and drink almost anything and lead a normal life. So try to find a GI, or maybe your Dr can work with a GI via phone or something to help diagnose you.
good luck with everything!

 

[Hobbes650]

One thing I wanted to add about surgeons- there are many good ones and POPS mentioned just one. UCSF also has Dr. Schrock, who learned from Dr. Koch (inventor of Koch pouch and j pouch I believe) at Mayo clinic. Don't ever go the Koch pouch route- that surgery should be put to pasture. There is another type of surgery similar to a Koch pouch called a BCIR, but it's still Koch pouch, just that some doctor decided to tweak it a little bit and then rename the procedure after himself. Ilieostomy surgeries should be preferred over Koch pouches in my opinion, but a surgeon will do a Koch pouch if you want one. The j pouch and or other types of internal pouches do seem to some issues with prolonged use, and that's why doctors keep coming up with new ways to make one. That's important to know. Permanent ileostomy surgery does not experience similar complications, but nobody really wants to do that one first for obvious reasons. No matter what path you take, surgery will make you feel much better. Knowing what to expect beforehand though, will help you later on if any problems come up. I wasn't very well informed of possible complications (see my story) and sometimes that happens. Good luck!

Hobbes650