So frustrated

[sshelledy]

Ugg I am so frustrated and tired of dealing with whatever it is I have going on with my insides. I have had chronic diarrheah for eleven years now. A colonoscopy ten years ago that showed nothing and I was basically told I have ibs and that was that. I was given a variety of different meds to take and nothing would work. I even went to the gi doc who did my colonoscopy and asked for a colostomy bag because I was having so many problems and couldn't do anything. The past year or so things are getting worse, I have constant aching and cramping pains in my 'insides'. I say my insides but it's not my stomach or ovaries or uterus, I really think it's my colon/intestines hurting me. I constantly have right mid level quadrant pain an lower left quadrant pain. The past two doctor appointments I have had the doctor checking my abdomen has touched something on the right side and it sends me off the bed it is so tender. A month ago I had an upper gi that just showed gastritis and I was given previcid to start taking. I have also started taking colestipol and that has helped a lot with the diarrheah and some of the pain but it hasn't stopped it. A few weeks ago I was admitted to the hospital with chest pains and they couldn't find anything and determined the chest pains are somehow related to my colon problems and I am scheduled for another colonoscopy on Monday.

I'm really nervous about this colonoscopy as I want them to fin something so they can treat the pain but I am afraid I will again get the same answer that there is nothing wrong. I hate to keep having all these expensive testing and stuff done when they continue to not find anything. I told my husband if this colonoscopy doesn't show anything then they will probably refer me to a paychologist next because they think I am crazy!


Has anyone else had frustrations like this? Has anyone taken colestipol for thier ibd? Does it sound like I have a real issues like an ibd or doe it sound like ibs? My PcP says it's ibs because I am a "large woman" and people with ibd loose weight and are skinny.

 

[UnXmas]

Lots of people have had this problem surrounding diagnosis unfortunately! If you haven't already, check out this thread for people still waiting for a diagnosis: http://www.crohnsforum.com/showthread.php?t=13113

Many people feel the same way you do, hoping that their tests show up something; it's natural that you want to have your suffering validated and to hope that a diagnosis will lead to more effective treatment.

Unfortunately, some conditions can be extremely hard to identify even with invasive tests. There are many conditions that could cause your symptoms, some classed as gastrointestinal, some not. It can be very misleading to try to identify the source of your pain based on the location where you feel it. Many organs are very close together in the abdominal area, and some types of pain are referred, which means the site in which we feel the pain doesn't correspond to the pain's source.

Don't listen to your PcP - Crohn's certainly can occur in overweight people, and it does not always lead to weight loss.

IBS is a diagnosis that doctors use when they can't find the actual cause of digestive symptoms, or when they haven't yet done enough tests to find the real cause. The symptoms that lead doctors to suspect IBD rather than IBS are usually passing blood, fevers, and unintentional weight loss. So while you certainly have "real issues", from your post it seems you do not have the symptoms that would lead doctors to suspect IBD.

Be prepared that your colonoscopy might not reveal any answers. Going through tests can be very wearing. Sometimes you may want to take a break from seeking a diagnosis - I ended up doing that for a while before I was diagnosed, and it actually made me feel a lot better mentally, after I'd been putting myself through tests for so long. I think a key thing is to find doctors who are supportive of you and who will accept that you are suffering and try to help you regardless of what your test results end up showing.

I haven't tried the medications you mention, but if you would like some ideas of treatments for diarrhoea or pain, just ask.

I hope your colonoscopy goes well. Come back and post about it if you want to - you don't need a diagnosis to post here and receive support. Many people on this forum have gone through a long process to diagnosis and will understand your feelings.

 

[runlikeagirl]

I am sorry to hear about all the testing you are going through, my Crohn's was found by accident during a colonoscopy due to rectal bleeding after exercise, and even then it was minimal, nothing that would require surgery. MRI showed nothing at all, and it frustrates my doctor to no end. She has her idea what she should be seeing, and it is not happening as she was expecting. She says, that Crohn's is so unique in each patient, that it is rarely the same on two people. In my case, my small joints hurt more than anything, and over all I have always felt good, and I can run marathons even now. Talk about different. But the colonoscopy was the thing, they even found a precancerous polyp, so I am glad I went for it.
I would not give up on getting to the root of you problem. You know best, it is your body and if something is wrong, no matter what anyone says, it is wrong.

 

[mish2575]

I bet they will find something. 10 years ago there may have been 1) barely any ulcerating or scarring and 2) the medical community has come so far in a short time (and crohn's is more in the forefront of their minds).

I'll keep my fingers crossed for you. please update us right away.

 

[2much]

I can really appreciate your frustration. My story is very similar and was diagnosed with Crohn's disease 20 years after my symptoms started. I was told that I had IBS after extensive testing and just accepted the diagnosis until I experienced blood mixed in my stool for one week. By the time I had the colonoscopy the bleeding stopped but went through with it anyway.
My colonoscopy revealed serious inflammation at my cecum and terminal ileum....could not pass the scope past the cecum plus the tissue was so friable that just touching it I bled.
Fast forward one year after several failed med treatments and I had a resection. The surgeon told my partner that I had been ill for a very long time. I lost a lot of blood because my colon was so friable they could not clamp it , the clamps went right through it. If I hadn't had the surgery then i could have had a perforation at any time.

So....I agree IBS is a fall back diagnosis ....trust your instincts .....this is your body and you know when something isn't right.

Good luck....I hope you get more definitive answers so that can be treated and not suffer so greatly.

And by the way...I am a large woman.....never have lost weight with this disease. In fact I am in a flare now and not eating very much and I have not lost any weight. Weight is not a proper or real diagnostic factor for IBD....it infuriates me when people associate weight with this disease. There are many of us big people with IBD....

 

[SarahBear]

Hi, sshelledy!

I'm sorry to hear what you've been dealing with. It does sound incredibly frustrating.

Would you mind listing for us what tests you have had and what, if anything, was found on the tests? Have you had a capsule endoscopy or MRI to try to see your small intestine?

Would you share your symptoms with us, as well? Have you ever noticed blood in your stool?

Being disappointed in clear test results is not strange around here! I know exactly how you feel. I experienced symptoms for nine years before I was diagnosed, and each normal test result was a big disappointment because I knew something was wrong. Finding a diagnosis is the first step on the road to treatment and feeling well - since you know that, it's absolutely logical to be disappointed in clear test results. However, if your colonoscopy comes back normal, please push for additional testing. It sounds as if your small intestine may need to be looked at, as well.

Have you been to the Undiagnosed Club section of the forum? If you'd like to check it out, you can find it here.

 

[Rocking on]

i really think you need a "pro" hospital. i am lucky enough to have the mayo 5 hours away, but when all my stuff started 16 years ago, i suffered for two years with my local doctors who really had no damn clue. mayo had me figured out very quickly.

i hope u feel better soon

 

[sshelledy]

Thank you all so much for your input. I posted this back in April of last year on the my story link on this website. I thought I would just repost it here since it explains a lot of my symptoms. I also just thought of this when I was thinking about seeing blood in my stool, and no I have never noticed any visible blood. However, a couple of months ago I was having an episode when I passed something that was very weird! It was long lumpy looking and very black. I was so stunned by it that I had my husband come in and look at it too. (haha He is such a good man to help me with all this) It made us think of when a snake sheds its skin. It looked like I had shedded the inside of my instestines somehow. Very weird. Anyway, here is my 'story'.

Hi all, I am new to this site as I just happened to stumble across it yesterday looking for answers. I feel as if I am in a hopeless situation that has no answers. After reading so much information on this site last night (I stayed up way to late gaining information from this site) I feel like this website could be my saving grace. Some of what I want to share might fall into the TMI category but I am so fed up I want to try and find some answers to my problems and I’m hoping someone out there can help as I really hate to think I am the only one suffering with this. I started having problems over 13 years ago after my daughter was born. I had to have a c-section and it was after that surgery when the troubles began. Anything I would eat would cause my stomach to start cramping up and I would have to race to the bathroom and I would have diarrhea. I eventually went to the doctor for this and I was told I had IBS and I was given various medications to try but nothing seemed to help. Several years went by and I did eventually have a colonoscopy and a hida scan, I was told my colonoscopy was normal and I wouldn’t need to have it done again until I was 50. My hida scan showed that my gallbladder was nonfunctioning and I had it removed. It’s been the past few years where things have really gotten bad. My stools consist mainly of diarrhea, however occasionally I am constipated and I rarely have what I would say is a ‘normal’ looking poo. However when that happens I find that I am having to sit on the toilet for long periods of times. There are also times when I have a BM and it looks like a thin piece of ribbon which makes me think there is a stricture somewhere. Other times my BM’s seem to contain a lot of mucus and at times it seems like there is oil or grease in the toliet. There are times when the color tends to be a very odd color of yellow, and when that happens I know it is the beginning of a spell where my insides are hurting and cramping and I have to really watch what I eat. The odd thing seems to be that when I am in this mode it seems like I can eat carbs and sugary foods without many problems if any at all. However I really have not actual trigger foods like I have been reading about on here. I can eat the same thing for a week and it might bother me one or two days that week. Then it might not bother me at all for a month and the next month there is no way I could even attempt to eat it or I will end up in the restroom. The past several months if not longer I have started having really bad cramping on my insides after I eat. I refer to it being my insides because it really doesn’t feel like it is my stomach; it feels like it is my colon. I don’t know how to describe it but it seems like it is my lower abdomen that starts hurting. It will start feeling like it is hot on the inside and real heavy feeling. Yesterday I hadn’t eaten anything all day and when I got home I had a piece of pizza. It was 30-45 minutes later my stomach was cramping and I had goose bumps and had to race to the restroom. My BM was the odd color of yellow I mentioned earlier however the substance of it looked like sediment or sand of sorts at the bottom of the toilet. That isn’t uncommon for my BM’s but I am just getting so tired of not feeling well I want to find some answers and that is when I found this sight. Every once in awhile I will have an odd cramping/stabbing pain in my lower left abdomen, which I had yesterday afternoon and then I had a BM that totally wiped me out. It left me feeling totally yucky. Almost like I was a little nauseous and just completely exhausted not to mention my bum was hurting and burning almost the rest of the night. That also is not uncommon for me to feel that way after I have one of these spells. I will feel yucky the rest of the day/evening and will feel extremely tired. I also have what my husband said is a skin tag thing just outside of my anus. I thought it was a hemmorhoid and my sweet husband was helping me to take care of it and that is when he said it looked more like a skin tag. The other thing I have noticed is that when this skin tag seems to be irritating me I seem to have more severe problems with all of this. Yesterday in the shower it felt like it had torn a little bit while I was washing and today it was so sore and burning when I was trying to wash it I had tears in my eyes. I have been dealing with all of this for so long and without any real help from physicians that I don’t know what to do. I even went to a GI one time begging him to give me a colostomy bag so I wouldn’t have to deal with the pain and embarrassment of this anymore. I was told that they don’t give colostomy for IBS. the only thing i have noticed that i don't have problems with is loosing weight or having bloody stools, at least i don't think i am having bloddy stools. i can't see any blood except when my skin tag is bothering me. Can anyone help me or give me some advice? Does this seem like it is something more than IBS and how can I get my physician’s to understand I need some help? I hope I haven’t offended anyone with some of the graphic details as that wasn’t my intentions, I am just at the end of my rope.

 

[SarahBear]

So, just to summarize… your symptoms are: diarrhea, stomach pain, occasional constipation, occasional thin stools, occasional yellow stools, unpredictable sensitivity to foods, and an anal skin tag. Also the fatigue and discomfort following pain and diarrhea. Has that become any more common? Did I miss anything? Do you ever have night sweats, or are you ever woken up during the night by stomach pain and/or bowel movements?

So the colonoscopy is the only test you have had done?

Black in your stool can indicate blood. Since it was months ago, I wouldn't worry much about it now, but keep a careful eye out for any signs of blood in the future - red or black.

:hug: There is no such thing as TMI here, so don't worry about that! And it's wonderful that your husband is so supportive and caring!

 

[sshelledy]

Yes those are the basic symptoms. I recently had an upper GI that didn't show anything. Last month I was in the hospital for chest pains and had several different test for my heart and i was basically told the chest pains weren't from my heart, however they stil have not stopped. The follow up with my PCP he said they are thinking that my chest pains are associated with my GI problems. I am currently taking 40mg of previcid everyday, and hycosamine, colestopil everyday as well. and I was taking all of those meds when the chest pains started.

It's just very frustrating as we all know.

 

[sshelledy]

Well I had my colonoscopy today and of course everything looked good according to the doctor. he did tell my husband that he took some biopsies but it will be two weeks or more before I get the results. Just more frustration

 

[mish2575]

WTF!?!?!?!?!? YOU POOR WOMAN!!!!!
It might be time to try a different practice/hospital, etc. . . Are you near a large city (i.e. Boston) that has specialty hospitals?

 

[sshelledy]

I am in Springfield Missouri, so kc and st Louis would be the closet big cities. I do have a question however, all day today i have had sharp shooting pains in my left lower abdomen. They are so bad at times it takes my breath away and has me doubles over. I had pain there to begin with prior to the colonoscopy but it was not near this bad. Is that normal after a colonoscopy?

 

[UnXmas]

I am in Springfield Missouri, so kc and st Louis would be the closet big cities. I do have a question however, all day today i have had sharp shooting pains in my left lower abdomen. They are so bad at times it takes my breath away and has me doubles over. I had pain there to begin with prior to the colonoscopy but it was not near this bad. Is that normal after a colonoscopy?

I'm sorry the colonoscopy didn't bring you many answers. It seems - from my own experiences, those of people I know and from reading this forum - that it's quite common to get some more pain or diarrhoea or other digestive problems after a colonoscopy. I think the prep can upset the digestive system a bit. But if it doesn't pass in a couple of days or seems to be worsening, you might want to check with your doctors. Often you can ring the hospital department where your colonoscopy was carried out and ask questions of that sort.

 

[mish2575]

I've never had a problem after a colonoscopy, but i'm generally low in the pain area so i'm not a good gauge.

 

[sshelledy]

Well the frustrations continue. I just want to cry! I don't know what my next step should be if anything at all. I just got the biopsy results from my colonoscopy and they were negative for inflamation and colitis. So I guess I really do just have ibs. I just don't understand why the pain is constant in my left lower abdomen, and my right side coupled with chest pains. Wouldn't a spastic colon hurt all the time in those locations? Previously I would the crampin and hurting all over my abdomen area have diarrheah and would feel better. Now it's constant pain and I don't have diarrheah because of the colestipol I am taking now. Bit I'm not constipated either. This whole thing just sucks hiney!!!

 

[UnXmas]

Well the frustrations continue. I just want to cry! I don't know what my next step should be if anything at all. I just got the biopsy results from my colonoscopy and they were negative for inflamation and colitis. So I guess I really do just have ibs. I just don't understand why the pain is constant in my left lower abdomen, and my right side coupled with chest pains. Wouldn't a spastic colon hurt all the time in those locations? Previously I would the crampin and hurting all over my abdomen area have diarrheah and would feel better. Now it's constant pain and I don't have diarrheah because of the colestipol I am taking now. Bit I'm not constipated either. This whole thing just sucks hiney!!!

I'm so sorry. The trouble with the IBS diagnosis is that it has such all-encompassing definitional criteria that virtually any digestive symptoms can be included in it. So yes, it can include constant pain in your left lower abdomen. Doctors can even make those of us with a diagnosed bowel disease fit the IBS criteria, if someone with Crohn's experiences bowel symptoms when tests show they should be in remission, they'll often want to write it off as IBS.

IBS really just means your doctors haven't found the cause of your problems, though the one useful aspect of it is that it at least excludes a few things, as the tests you've had should have picked up on anything that puts your health at an immediate, serious risk.

I wouldn't get too caught up on trying to diagnose your own illness or whether or not your symptoms suggest or exclude IBS. You have a few options about what to do next:

You can push for further tests. There are endless tests that can be done. It really comes down to whether your doctors feel there is any usefulness in further testing and whether you want to put yourself through any more (including whether you want to put yourself through receiving more negative results).

You can ask your doctors to focus on treating the symptoms; let them call it IBS or simply undiagnosed and ask what further treatments are available.

You can take a break from the medical appointments and tests and concentrate on things that have nothing to do with illness, see how far you can do the things you want in life despite your illness, and return to doctors after you've had a break, if you want to, or only return if your symptoms get worse or you get new ones.

I know this is quite general advice, but I hope it helps some. Let me know if you'd like some more specific ideas about further tests or treatments you might try.