Here's my story!

[sdsteph01]

Hello all,

My name is Stephanie. Last year I started having severe stomach pains (mostly on the lower right side but it seems to move around) and gurgling sounds you could hear from across the room. I started having severe cramping followed by bouts of diarrhea. I would be fine and then all of the sudden BOOM...had to go. And I would just sit on the toilet for half hour sometimes and still feel like I had to go. Then I'd get up and go about my day then BOOM...10 minutes later again. I was also experiencing dark blood and a lot of orangy mucus too (sorry, gross!). I went to my primary dr, said "do you have crohn's in your family??" which I don't, then on to two GI's who did sigmoidoscopy and a whole slue of tests from food allergies to parasites. Everything came back negative. They said IBS because they couldn't pinpoint anything else. So, i've been dealing with this for the past year and a half and I have stopped going to dr's cause frankly, i'm broke and can't afford to keep going and having tests that are not helping to diagnose. And everyone keeps telling me- "Be happy that it's not Crohn's" but what is it?? Anyone have any advise???

Stephanie,
22 years old

 

[Kate]

Hi Stephanie

You know you should try a new dr thats what i had to do fir 5 years i keeped getting told i had IBS but it wasnt and like you i had given up untill i got sooooo sick that i couldt function anymore so i tried a new dr and the first time i saw her she picked it up and sent me to a speicalist. I know of others who have been through the same kind of thing as well. My friend Roddy is haveing to get the pill cam becuase they cant diagnose him but hes got some thing that resmbles crohns. I remember the dr telling me in ibs pain is normal but blood and weight loss isnt. However im not saying you have crohns but just keep trying it will happen for you. So welcome to the group and all the best. Oh and im me when ever you want.

Kate
23 years old

 

[jyarmo]

Hi Stephanie

I'm sorry to hear you're having so much trouble. I can relate with the loud gurgling sounds! None of us can diagnose you with Crohn's; however your symptoms are very similar to what I (and others) have gone through. I know that you've had lackluster experiences with doctors but I really think that you should consider finding another one. Hopefully a doctor will be able to help you figure out exactly what you have and will be able to help you treat it. By not doing anything you are potentially doing yourself harm. I'm not trying to scare you, but it is really important to get to the bottom of what's making you so ill.

Good luck and keep us all posted.

 

[cookey]

Hi Stephanie, nice to meet you..and welcome. I am concerned about your situation hun. I understand that you may not have insurance..but it is imperative that you somehow, get insurance or ask a family member to help you. I am not a doctor, so I cannot give you any advice as to what you may have or may not have, that wouldnt be right. However, I think you should try to do whatever you can to seek medical attention, and to not let this go. I only tell you this, not to scare or frighten you...the longer this goes on, it may, or could be something that has to be taken care of before it potentially gets any worse. Speaking from experience. Good luck Stephanie, please do what you can to see a doctor, so you can be properly diagnosed.

Please take care, and keep us all informed on your condition
Cookey*

 

[mikeyarmo]

I think what everyone has said so far is true. It is hard to remember what it is like to feel normal or healthy again when you are in pain for so long, but believe me it is worth going through all the tests and dealing with the doctors. You cannot go on each day getting worst and worst. You need to take action and get to the bottom of whatever this is right now.

Something that is also important is not to stress over any of this. That will just make things worst. It is hard advice to swallow, but you need to do your best to just let things happen as they do. You need to be prepared to listen to your doctors and try some different things. This way you can find what works for you and rid yourself of this problem.

 

[sdsteph01]

Thanks for the advice guys. Also, another question if you don't mind.... I really haven't experienced a lot of weight loss and the blood/pains come and go. I guess that's why some family & friends keeping insisting it's not Crohn's (I have learned to tune them out as I know they are not doctors, but it's still frustrating!) and a lot of people I have talked to online who have Crohn's have made it seem like there onset was fast and severe. Is that always the case?? As I said before, mine was severe at first and the severe part lasted about 4 months or so but then it seemed to get significantly better and now comes sporatically. I had a small bowel series last October and they said everything looked "normal"...and so was the sigmoidoscopy but it baffles me why no one has done a full colonoscopy yet!! I know I need a new doctor badly! I had my last bad flare up last Friday in fact and there was so much blood in my stool that I actually saved it in a Tuperware and I have it wrapped up in my fridge because it seems whenever I give "samples" they aren't able to find anything so I thought i'll save it, take it to dr I have now and give it to them as it is the only physical thing I can give to them that shows what I am going through. I hope it will be a little harder to brush off if they actually see it in front of them! So gross but at this point, it's all I have!

Did anyone elses onset sound similar to mine?? And does anyone know what the significance of the orangy mucus is?? ( Again sorry so descriptive!) Alot of times i'll have a lot of it with the bloody stool and sometimes just a lot of mucus by itself with blood in it (no stool).

Thanks again for the support guys! I appreciate it!

Have a great day!
Stephanie

 

[mikeyarmo]

I think that my condition was not really fast and severe, but I slowly got worst (well constant constipation that did not go away) until I had a sigmoidoscopy and later colonoscopy which both confirmed Crohn's. I think it was a smart idea to keep the sample, but you should ensure that they can use a frozen/old one. It would be a shame to give it to the doctors only to find out that they cannot use it. I really suggest you also really push your doctors or see a new one, as mucus and blood in your stools are not symptoms that should be allowed to continue. You really need to get to the bottom of this, and since you have a sample the sooner the better.

I do not know the significance of the mucus, but I do know the doctors always ask me if there is any blood or mucus when I go to the washroom. I urge you to get your doctors to do more or see new doctors to figure this out once and for all.

 

[Kate]

http://www.medic8.com/healthguide/articles/irritablebowelsyn.html

6. Orange stools may be due to certain medications. Beta-carotene (a form of vitamin A) may cause orange stools as a side effect so check any sources of vitamins or supplements, as well as intake of foods high in beta-carotene (carrots, sweet potatoes, etc.). Another possibility is if the stool is more pale-orange, it might indicate lack of bile salt (which gives stool a brownish color). Other sources are antacids containing aluminum hydroxide, barium from recent barium enema test, and hepatitis. Consider checking some baseline liver tests to evaluate proper liver function.

??Artificial orange or yellow colorings, or other artificial colorings can product orange stools. Hi Where on earth did you ever get the idea that bright yelloe stool indicates excessive bile involvement ? . Nothing coud be further from the truth. It's the opposite. It is the addition of bile into the intestinal tract as part of the digestive process that actually turns the stool brown.

Stool starts out green , then turns bright yellow as it goes through the digestive tract. It is bile and bacteria that finally turn it brown. Yellow or green stools can indicate stool is passing through the digestive tract too rapidly not giving it a chance to change colour. Bright yellow stools can also indicate not enough bile / bilary obstruction.

16. Mucos in Stools

Mucos is produced in the intestinal tract as way to coat and protect the gut lining. Having too much or too little mucos can cause problems.

Proteins are digested in the stomach but carbs need to be digested in the intestines. If your child has leaky gut, the intestines will form a layer of mucus in the lining to protect itself from the irritating di and polysaccharides. But it also means that the natural enzymes in the intestines cannot get to the food b/c of the layer of mucus, so it becomes fodor for the yeast, microbes and bad bacteria living there. Because the supplemental enzymes are digesting the food in the stomach, the food is not causing any more problems in the intestines and the need for protective mucus is decreasing. My son had mucus in his stools for about 3 weeks. It is the body clearing itself out and detoxing. The next thing I noticed after the mucus went away was a much more healthy skin tone which I think meant he was finally absorbing the nutrients from his food.

You can have mucos for a variety of reasons. However, since you know there was lots of gunk in there, and just started an enzymes/probiotic program with help cleaning out the gunk, the mucus can be sloughing off in this process. The alternating stool consistency can also be part of this process. Allow a couple weeks for the bulk of the cleaning out to happen. I know there is the tendency to analyze things on a minute by minute or hour by hour basis, but the transit through the gut can be a matter of hours, days, or weeks. Allow about a week to evaluate changes in diet, supplements, or meds to see the net results (unless there are drastic healthy problems happening, of course).






Here is some info im sure youve seen the IBS stuff before but you can never know to much....

Hope this helps

Kate

 

[Kate]

steph check out the link its all about ibs and could fit you i know someone with dabilitating IBS and people i know with cd say its not as bad as CD but looking at that and the fact after all i had gone through and they thought i had it i would say it can be as bad you just dont have the long term dammage

 

[cookey]

Stephanie, if I give you any good advice today..please read. I'm really not trying to sound like a mother, or like a know it all....because I certainly don't know everything there is to know about our Disease. I just want to tell you from 28 yrs of experience. If you are bleeding that badly you MUST find a way to get yourself to the proper doctor to have your afflictions diagnosed. I have been so worried about you. I see myself in you..just writing my thoughts to you right now, I'm shaking. Please, I don't want to scare you...if nothing is done soon, it is quite possible that you may hemmorage from the bowel, as I did, because I let my condition go. I only tell you this out of concern. Please honey..do what you can to see another doctor...so they can take some more tests to properly diagnose you. I question your doctor, big time...you have blood in your stool, and he says nothing...he shouldnt be praticing medicine. If you're saving your blood, there is something very wrong there.
I would love to chat with you privately some time if you are available to do so.
Please keep us informed,
Very worried...Deb*

 

[Tami Lynn]

Hi Steph! I'm glad you found this board, and it's great to have you with us!​

Let me ask... are you possibly eligible for any type of state assistance to help you with medical coverage (i.e. Medicaid)? If I were you, I would ask around and try to find a good doctor who treats digestive disorders. You may not be able to afford a doctor, but you really can't afford to ignore the problems you've been having either...ya know?

Sometimes you have to specifically request that your doctor perform certain tests. If you want to be sure you're going to get a doctor who won't waste your time and money, you could always interview prospective doctors...find out what kind of experience (and reputation) they have for treating IBD...talk to some of their patients, find out if they're willing to listen to you and work with you, etc..

My daughter was dx with Crohns (not to say that's what you have) this past summer, and the first few tests she had done all came back negative; however, her symptoms persisted and we continued with the testing. It was when she had a colonoscopy that they finally found the CD.

There are several tests that can be performed to dx bowel disorders (none of them are exactly fun...but at least one of them should be able to detect what's going on).

The ones you might want to specifically request are the following:

Full colonoscopy with biopsy (tube/camera up the... well, you know!)
Pan-Endoscopy (tube/camera down the throat & into the stomach etc...)
CBC and other blood tests
Barium swallow
Small bowel follow-through
Barium enema
Abdominal/pelvic x-rays
Abdominal/pelvic CT-scan
Stool samples

(If I've missed any of the regular tests, somebody from the board please feel free to add to this list...)

It is very likely and possible that each person posting on this board has had a different experience as far as when the disease came on and how it presented itself. I don't think it always comes on suddenly or "fast and furious," although for some it did happen that way.

I had stomachaches and diarrhea for a couple years before it got bad enough for me to realize that I actually needed to go to a doctor and seek treatment.

Anwhooo, I wish you the best. Hopefully you'll gain some insight through what you've read and be able to devise a good plan of action for yourself (on what you can do next).

I encourage you to keep trying until you get your answers

I wish you the very best with finding a diagnosis and am looking forward to hearing updates from you in the future!

Whether you have Crohns or not, most of us here can relate to the common demoniator of what it's like to live with digestive whoes (sp?).

 

[mikeyarmo]

I think Tami gave a pretty good overview of what tests are available for you to try. I know for me the only one I had that actually showed anything was the small bowel follow through. I think that doing one of those and a colonoscopy should do a really thurough examination of yourself to determine if you do have any form of IBD. Speak to your doctor about these (as well as the other tests). I would do some research on them yourself so you have an idea of what each one entails and so you can reason with the doctor why you want them (instead of just saying you heard that they are good to do).

 

[sdsteph01]

Hi again!

Thanks all for the advice once again...First, I did have the small bowel follow through last August and it showed nothing. But I still haven't had the full colonoscopy which I know I desperately need. I guess I just keep telling myself that since the pain has somewhat "calmed down" in recent months and since I have not been losing a lot of weight and all tests so far showed nothing, that I must be fine. But the blood is still there...almost everytime I have a bowel movement...and it is 95% of the time diarrhea. Anybody happen to know of any good GI's in the San Diego area by chance?? I've been to 3 so far. Since SBFT was negative in AUgust what should I request next (besides colonoscopy)??

HOpe everyone is doing well and having a good evening. Thanks again. You guys are so wonderful! It makes me so relieved to read your posts...I just can't thank you all enough!

-Stephanie

 

[Mozam]

Hey Steph,

Welcome to our board honey!

I find it astonishing what we have to go through sometimes, in order to get some proper diagnosis, I really do. I don't want to turn this into a full scale rant against the medical profession, because this aint the place to do it - and most doctors are angels, and do a fantastic job. It just makes my blood boil though when you hear of a doctor who must've got his license to practice medicine in a raffle or something! Steph, I'm not from the states, so I dunno what your healthcare system is like over there, but your doctor MUST be binned. NOW. For the sake of your OWN health - not anyone elses, your own.

These tests that you need doing - in the grand scheme of things, compared to some medical procedures that can be carried out i.e limb and major organ replacement, skin and bone grafts etc, then what you require is pretty small potatoes. So WHY can't they just do them in your case???

I'm sorry if this sounds like a rant - I'm tired and feeling kinda cranky (think it's a lack of sugar thing), but it really pisses me off when I hear of someone who is quite clearly in distress with their health, who has a pretty good idea of what is wrong, but their doctor is either too ignorant, stupid or blind to give the same call.

Take care Steph - please keep us all posted with how your getting on. Like the rest of the gang on here, I'm worried for you.

 

[Christy]

Hi Steph,

I understand what you are going through! I was actually diagnosed with Crohn's about 10 years ago, was on meds, went into remission, then off the meds. Since the specialist who diagnosed me by colonoscopy and endoscopy, I've seen 2 different specialists, one who proceded to tell me I just had IBS (without any testing), and another (last August) who believed I had Crohn's, did a colonoscopy and determined everything was ok. As a whole, I feel better more often than I don't (which is good), but my symptoms concern me when they are happening. I do not have all the same symptoms as you, but I do get severe pain, diarrhea, nausea, recently I've thrown up a couple of times, and occasional blood. I was also very tired recently, for about 2 weeks, and thinking I might be anemic, I went to a family doctor who did all kinds of blood tests, including the typical Crohn's tests and nothing.

I too, have little money to afford doctors visits. I have student insurance. I also moved to an area in the last year where the closest specialist is 2 hours away. I want to be healthy but I feel like specialists are hit and miss!

When I feel good, I just kind of forget about it, but when things are bad, I'm kicking myself for not finding a good specialist. As everyone else has said, your symptoms (the blood) seem of great concern. I hope you can get a diagnoses soon. Good luck to you!

Christy