At a complete loss

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New Member

Date Joined Mar 2009
Total Posts : 3
   Posted 3/18/2009 9:42 PM (GMT -7)   
Any insight?..years with being no closer to an answer.

Diarrhea and severe anemia for several months changing to frequency of up to 10 times/day with mucus and drastic weight loss. Changed again over last few months to severe bloating, nausea, periods of constipation and mild pain with an inability to re-gain any weight back and anemia. Tests have included both upper and lower scopes, SBFT, barium enema, CT, parasite checks, numerous blood tests etc. all of which were normal. Colonoscopies and SBFT could not be completed/seen clearly but were otherwise OK. Also any ideas as to why the small bowel follow through tests all caused excruciating pain in my right explanation has been given as to why, just hoping it won't ever have to be repeated again!

At a loss trying to understand the recent changes or what to expect next. Dr feels it's IBS and has virtually jumped left trying to deal with this on my own, but have no idea where I'm going wrong. The stress and impact this has had on my young family has had devastating consequences. Would appreciate any advice/opinions from anyone suffering similar issues.

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 3/18/2009 11:35 PM (GMT -7)   
Lousy Dr. to just give up. What do you think it is? Have you ever seen other Dr. for second opinion. Can you sleep well, avoid stress, watch diet and all the other stuff they tell Crohn's patients to do? See if it responds. Hope you get some answers. Not knowing is always a helpless feeling. Sometimes it seems like a fight to get treatment! I hope things workout and keep us posted.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 3/19/2009 3:59 AM (GMT -7)   
Hi I had IBS for many years and now crohn's I follow a low residue diet which might help with some of your problems and I get a B-12 shot once a month ...I noticed you said that you have anemia so it probably would be of help to get help with that.. how much weight did you loose? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still gail

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/19/2009 6:37 AM (GMT -7)   
I would ask for a second opinion. A good doctor will refer you to someone else when they are stumped. Have you had a pill cam done? Many who have had troubles getting diagnosed with all the other tests, try this one and finally get their diagnosis. Hope you get things figured out soon.

Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 3/19/2009 6:41 AM (GMT -7)   
idea If you're not already seeing a gastroenterologist, you certainly should be. In my experience, IBS as used by PCPs tends to mean something quite mild - this certainly isn't !
The SBFT pain sounds to me like you do have inflammation, which just has not been spotted in any other way. For you not to have been given an explanation seems reprehensible. That may well be caused by inflammation not in the surface villi in the gut lining, but at a deeper level; that would certainly explain nothing showing in the scopes. (eyes I think doctors are inclined to rely on scopes too much, I have had scopes and been told there is no inflammation present when I can feel it and it causes bloody stools ! )
When your doctor shrugs, that is his/her way of saying that your disease has reached their limit of competence, and they've run out of ideas. Most doctors would willingly accept you should try elsewhere, see if you can find a care provider who can do better; medicine is like gunslinging, there is always someone better out there. So get another opinion, try another doctor - what do you have to lose ?

crohn's pt mom
Regular Member

Date Joined Nov 2008
Total Posts : 86
   Posted 3/19/2009 8:14 AM (GMT -7)   

I have IBS.  I think it's a junk diagnosis  when the dr. can't find anything else.  I had every test there was and they couldn't find anything. However, I lost 33 lbs in about 3 months and was deathly sick.  I ate nothing but white rice and fat free chicken broth. Now I'm on an anti-spasmodic (levbid) and prozac and it's mostly managed.  Of course immodium when needed - which is alot lately since stress makes it worse.

You need a dr. that will stick with you until you feel better or your symptoms are managed.  Because if it is IBS it can really screw up your life -

a co-worker has been taking a chlorestral lowering drug for his IBS - prevalite(?) and it has helped tremendously.

New Member

Date Joined Mar 2009
Total Posts : 3
   Posted 3/19/2009 9:22 AM (GMT -7)   
Thanks for the replies. I have lost 40 lbs total, but haven't lost anything recently, I have tried various diets but found no link with what I eat. I am in the process of finding another PCP and GI doctor but am reluctant to go through the stress of more tests only to be told everything is normal, however my concern now is that my daughter has recently started similar issues and is curtailing her food intake. My question is if the colonoscopy was unable to reach past the turns and the SBFT unable to show up the last portion of the small intestine - could there be a problem lying in these areas...should I continue to chase this? I have days, sometimes a week where all is well although the bloating is now 24/7 to the point of looking heavily pregnant - my stomach can be grossly hard and distended and extremely uncomfortable. There are days where I'll be unable to go for 3 or 4 days followed by a day when I'm knocked off my feet with diarrhea, then deep stomach pain and fatigue. So the circle repeats itself, only now there is no relief from the bloating. Normally I do not experience much pain or cramping, especially in the days when I used to have diarrhea all the time, which I know does not fit with either IBS or Crohn's. My current GI Dr is very uncommunicative, never provides any information, describes me as a corpse and actually told me not to talk when I entered her office the last time, before giving me an earful for returning to my PCP asking for any kind of relief!

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 3/19/2009 2:58 PM (GMT -7)   
shocked Jatika, your GI is a disgrace to her profession, the best she can be described as is tactless, rude and unable to fulfill even the most basic of communication needs. If you know any official complaints body that regulates that sorry excuse for a doctor, I strongly urge you to contact them. Not only will you feel empowered as you mail the envelope, but you will have the satisfaction of knowing that it will perhaps save others in your situation from having to endure the same torment. yeah That behaviour is just not good enough, totally not acceptable.
I know exactly what you mean about not wanting the stress of more tests that show nothing. I am in the same shoes. Typically, by the time I get a scope, which involves my GP doing blood tests that show nothing, then a wait of weeks or months to see a GI, then the scope, then a wait for an appointment for gut has settled down again ! And even when it hasn't, the scopes and tests still don't show anything. It is utterly demoralising. shakehead
nono But your symptoms are considerably worse than mine, and you have a child to consider. It may be that her behaviour is imitation, or it may be something entirely physical ( a fact which sadly many doctors may find unlikely, although it is all too possible), but in either case, you need to sort this out for her sake.
If your colonoscopies and SBFT were only partial and could not be completed or seen clearly, that's rather like a doctor peering through a very dirty window to see what is within; it is certainly not possible to exclude diagnoses using procedures that do not work. I would hazard a guess that you have a "shake'n'bake" gastroenterologist who didn't know how to do these procedures properly (you may be lucky not to have a punctured bowel), and you would do a lot better from another go. And yes, there is an area of the gut that the scopes cannot get to, and that is why the pill cam is often used, with great success. Given your constipation, I wonder if you might have strictures in that area. That would make a pill cam not such a good idea.
As far as diarrhoea without pain is concerned, I get that quite often; I don't know how common that is amongst Crohnies, I seem to be pretty unusual in many respects. It seems to depend on what I have been eating, the blander the food the better. The more "wrong" my diet is, the worse it feels for me as it says goodbye to me. Dietwise, I found that although I felt an immediate improvement upon going onto an organic gluten and dairy free diet, it did take a long long time - months - before I started to really have a more settled gut. It seems to me that once your gut is damaged, it is pretty hard to get back to a sound nutritional/digestive status.
I'd suggest you start on some probiotics of the sort that are supposed to improve gastric transit time and dampen inflammation; it can do no harm, and may well make a big improvement to your bloating, if nothing else. How ironic that something that is not even considered a medicine is so much more likely to do good than anything your doctor prescribes !

Regular Member

Date Joined Sep 2007
Total Posts : 182
   Posted 3/19/2009 3:18 PM (GMT -7)   
Wow JATIKA: Your story sounds very similar to mine and makes me teary. Gosh, I wish I could help. I find it so amazing that so many people on this forum Care. They truly care because they are going through what we are. Thank you everyone. I love the advice that others gave you. Stay Positive! Get a 2nd, 3rd, or 4th opinion, I Know I have. Just a side note: If you have not already please have your gallbladder checked (from my experience). Trust me, I understand- most of us here to do. This illness is horrible and it is frustrating when we are told no one can help. I am waiting for a cure @ this point as my doctors have told me that none of their patients are as sick as me. I just don't believe that one bit. Nothing they can do, I have already been on everything. Whatever! Don't give up. Just keep doing what you can, researching etc. Keep your head up. I like the idea of you doing the camera pill test if you can. Keep in touch with us all please. We are all here for you!
I have had Crohn's since I was 21 years old and I am now 28!!
Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

New Member

Date Joined Mar 2009
Total Posts : 1
   Posted 3/19/2009 4:15 PM (GMT -7)   
I was diagnosed with IBS at 15 months old. I suffered with GI problems every day since. My doctors blamed it all on allergies. "She's allergic to milk, cheese, wheat, corn, chocolate etc. keep her away from it." It really didn't help at all. When I was 19, I had an appendectomy. My appendix had ruptured and I was developing peritonitis. They rushed me in for surgery and all was well. A month later, I had a massive abscess and needed surgery to repair it.. several complications down the road and a bowel ressection was warranted. They took a sample for cytology and found that I had Crohn's. I was put on pentasa but wasn't told anything about any special diets or anything. So, naturally.. at 19 I just took the pills and went on my merry way. Pentasa wasn't working for me at all. My mom found the low residue diet through some research, so I gave it a try. It worked to a point. However, I would flare up again despite being on pentasa. I'd spend the night throwing up and the next day recovering. I'm now soon to be 27 working as a nurse and here are the doctors putting me back on pentasa again. "Give it another try" they say. I was put on entocort at the same time. Voila! NOTHING HELPED! My new GI guy took me off the entocort and put me on imuran. It seems to do a good job at dropping my white count. The pentasa is a worthless.. as always. His idea now is to d/c the pentasa and add Humira to the mix. My white count is already under 4, which in the grand scheme of things could be a lot worse. However, adding Humira to an already low white count doesn't bode well for working in a hospital. Not to mention that I have a few areas of fibrotic bowel at my surgical sites that don't allow for a video capsule to pass. Our best guess is to try humira, hope it helps. I'll continue to flare every 9 days until they decide to do another ressection and cross their fingers again. AHHH!!!!


Veteran Member

Date Joined Mar 2005
Total Posts : 1289
   Posted 3/19/2009 6:53 PM (GMT -7)   
wow...every time i read posts about crappy drs. on this site i realize how lucky i have been. just out of curiosity where are these drs? are they gi's? small towns?
for a dr. to give up is absurd. i thought they became drs. because of the challange...certainly getting to this point was not easy for them!
get a 2nd opinion...get a 3rd opinion...don't stop until you find a dr. you are comfortable with!!!
it doesn't matter what aspect of my life we're talking about- if i meet someone and i'm not comfortable after meeting/talking with them...SEE YA!
that goes especially for my health!
I've been lucky over the past 20 years and have had great caring drs. that empathize (sp.) with me.
I dr. may not be able to cure me, but he can certainly make me feel like i'm the most important one in the room and he's doing everything he can to make my life better!!!!
good luck to you, and keep looking for the right doc!!!!
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