Introducing myself

[Hbear21]

Hi everyone,

I've been reading this forum for awhile now, but I figured it is time to join since I am gearing up for another round of testing. I am on my third GI and have had a fair amount of testing done--flex sig, endoscopy, colonoscopy, CT scans. I started feeling ill in early December, and wound up having my appendix out (on my birthday!). But the pathology report showed that it wasn't appendicitis, so that led me down the IBD road. My bloodwork has been inconclusive, aside from showing anemia and some vitamin deficiencies, and my scopes have been inconclusive as well. My current GI (the first one was incredibly rude and unwilling to help me, and the second was completely fixated on IBS) is in Boston, though I am in upstate New York, and has been the best so far, though she has also been treating me with the assumption that I have IBS. I did have a tentative IBS diagnosis given several years back, maybe around 2004, but my symptoms are very different now. My symptoms since December have been abdominal pain, diarrhea, blood and excessive mucus in stool, anemia, weight loss, fatigue, joint pain, nausea, dizziness, night sweats, and occasional fevers. I have been unable to work since December and spend most of my time in bed (or in the bathroom!)

Recently I have been trying Amitriptyline for the pain, which I think has been giving me some vision problems, so I am trying a lower dosage. Prior to that, I have tried several anti-spasmodics such as Bentyl and Levsin, but they did nothing for the pain and/or gave me awful side effects. I have also been on Prilosec, Align, and various fiber powders, but didn't see much progress from them. I am getting tired of waiting for something to happen, so I am currently trying to schedule an appointment with my GI and get some more testing done--maybe an MRI, ideally a pill capsule.

If anyone has advice about how to deal with doctors who are hesitant to do more testing or are focused on IBS rather than looking further for an IBD, please let me know!

 

[bozzylozzy]

Hello! Welcome to the clan, sorry to hear you are in the same boat as many of us.

When you say your biopsies from the scopes were inconclusive.. was it normal? Just I did have inflammation.. but biopsies were "unspecified inflammation".
Do you have any family history of IBD?

Feel free to vent any time you have definitely come to the right place xxx

 

[Hbear21]

The biopsies from my flex sig showed some rectal inflammation and "focally active colitis", but the GI said that it didn't mean anything. There was also some esophageal inflammation found in my endoscopy, as well as an irregular Z line, but everything else was normal. I never had any acid reflux or symptoms of that nature. I don't have any known family history of IBD, but my mother is adopted and has no family history, so there is some uncertainty. She also has multiple sclerosis, not that there is any connection.

Thanks for the welcome! It is so nice to find a community of people who know what I'm going through!

 

[Cat-a-Tonic]

Hi Hbear, welcome to the forum. Your symptoms and med history sounds a lot like mine. What dose of Amitriptyline are you on? I take 25 mg every night. I don't think it does anything for me as far as pain, but it does prevent my migraines and it helps me sleep at night, so I'm happy to stay on it. I've also been on Bentyl and Levsin - Bentyl did nothing, and Levsin gave me horrible nausea and vomiting. They're both IBS meds, and it sounds to me like you've got something more than "just IBS" going on, so I'm not surprised that they did nothing for you.

What fiber powders were you taking? I take a tablespoon of psyllium husks every day, and that (combined with my other meds) does seem to help quite a bit. I don't get as much cramping and I do get more regularity with my stools. I take pure organic psyllium with nothing added - I've heard that psyllium products like Metamucil have a lot of additives which can cause cramping, so if you tried something like Metamucil, it may not have helped very much.

Don't let doctors tell you it's IBS - you do not get things like bleeding, weight loss, or night sweats with IBS. Has any of your doctors taken a good look at your small intestine yet? If not, I would say that MRI or pill cam would be your best bet, so keep pushing for those tests. The scopes only see the very beginning & the very end of the small intestine, so there's a whole lot of small bowel that's unseen. What other tests have you had besides the scopes?

 

[Hbear21]

Thanks for the response! I started off at 25 mg of the Amitriptyline, but I was having problems with spotty/blurry vision, so now I'm cutting the pills in half until my prescription for 10mg comes in. I'm also on Wellbutrin and Effexor XR for depression/anxiety, so my doctor doesn't want to add much more to that. Of course, having existing psych diagnoses doesn't make getting a diagnosis any easier!

I started off taking Citrucel, which gave me horrible cramping and diarrhea, so I switched to Benefiber. I started at a tiny dosage and was trying to work my way up, but kind of gave up on it. It didn't hurt me as much as the Citrucel though, so I should probably start that up again.

My small intestine is my next step, hopefully. It's only been seen via CT scan, but my first scan was unable to even locate my appendix (before my appendectomy) and my surgeon said that sometimes they don't work well on smaller people because fat helps create contrast. So I'm doubtful about them, and would really like to try an MRI. I also would like to be tested for autoimmune conditions and to have my adrenal function tested, but my small town GP is reluctant. I just don't know if I want to see a rheumatologist or an endocrinologist. Some of my symptoms, like the dizziness, fatigue, and sensitivity to temperature, were around before my GI problems started in December, so that could mean something. I'm also going to get tested for Lyme in a couple of weeks when I get my vitamin D levels rechecked.

I've fought the IBS diagnosis a little bit, claiming all of my red flag symptoms, but various doctors have told me that the bleeding is probably from hemorrhoids. I've had hemmies in the past though and they were nothing like this--the rectal pain and bleeding seems to subside for a few days when I use a suppository, but it always comes back. I also had some barely visible hemmies cauterized during my colonoscopy, so you would think that they wouldn't keep being a problem. My horrendous first GI told me that it was probably my period, which quickly led to me finding a new doctor!

 

[Cat-a-Tonic]

That's a good thought about getting your adrenal function tested. I was tested for Addison's disease (adrenal insufficiency) myself a few years ago - apparently Addison's can cause Crohn's-like symptoms, and it also responds well to low doses of corticosteroids. I had a great response to only 10 mg of prednisone, so my GI felt we needed to check for Addison's. I tested negative for it, but at least I got to rule it out.

Have you had your ANA tested? That's a simple blood test and can check for things like Lupus and RA. It's not always accurate, but it's a pretty good indicator for certain autoimmune illnesses. When I was diagnosed with arthritis in my hip (now both hips), my GP tested my ANA to see if I might have RA. I know that Lupus can cause a raised/positive ANA, and I believe Behcet's can too, and both of those illnesses can cause Crohn's-like symptoms as well. Worth looking into definitely.

 

[dannysmom]

Hi and welcome. Thanks for joining and sharing your story. My son has many similar symptoms ... and did have a thorough workup, yet still has an uncertain diagnosis. I think your requests are good (MRI/MRE and pillcam). Have you have any antibody blood work for IBD? (ie Prometheus, ANCA). Some doctors feel they could also be helpful with uncertain test results.

Seeing both a rheumatologist and endocrinologist is a good idea. My son has seen them too. We've seen a GI that was fixated on IBS too ... it can be very frustrating. Our GI is very kind and supportive and just plain admits our son is a hard case and doctors just do not know.

Have you tried any diet changes?

 

[grt73]

Hi HBear,
Reading your post it reminds me so much of the struggle I went through to get diagnosed by useless doctors! I am living in the UK and I cant comment on the quality of the US health service but in good old blighty I had to rely on the NHS (national health service) or no hope service as I like to call it. Anyway, I had many of the symptoms you mentioned and all of the tests you had done. I was told I had IBS up until last December when I had emergency surgery. Have you had an xray of your small intestine? It was the only thing I did not have done over the years and potentially if I had I could have been treated with medicine rather than surgery!! I am now living with crohn's disease which is bad but in a way I am relieved to finally find out what was giving me such grief for so many years. If the US is anything like here, you need to keep pushing the docs all the way. I had a colonoscopy, endoscopy, a million blood tests and a biopsy of my large bowel. all were clear. Because the small intestine is considered as no mans land it seems real hard to get it checked out. that was where my issues lay and if I could go back to all the docs and rub there noses in my situation now, I would!! Good Luck and don't give up the fight!!!!!!

 

[Hbear21]

re dannysmom: Thanks for your post. I haven't had any antibody panels done yet--I asked my gp about it, but she is totally unfamiliar. I'm going to ask my GI when I can finally get an appointment. I'm somewhat limited in my options of specialists, since I am currently living in a pretty rural area, so I am wondering if I should look for a rheumatologist and endocrinologist in Boston, where my GI is. The "local" endocrinologist is mainly a diabetes specialist, so I'm guessing that would not be very useful for me??

Though I've been keeping a food and symptom journal for ages now, I haven't been able to find any connections between the two. I was tested for celiac via bloodwork and biopsy and am negative, so I haven't given much thought to going gluten free. It seems like I can have the same meal on two different occasions and feel decent one time and terrible the next, so I'm not sure what to do. I do try to stay clear of foods that I know can be hard to digest, like raw greens or nuts. And I'm not one for spicy or very rich foods anyway. I never seem to have any problems with dairy, which is nice.

re grt73: I haven't had a small bowel x-ray yet, or any small bowel-focused tests really. The more research I do and people I talk to, the more it seems like that could be the key. Thanks for your encouragement--it's a lot of work to keep chasing down doctors, especially from out of state, but I'm not giving up!

 

[dannysmom]

I think your idea to schedule an appointment with the specialists in Boston when you see your GI there is good. Maybe your GI could give you recommendations.

 

[UnXmas]

Hi, I'm another one who had a difficult time getting diagnosed.

Many people here will probably disagree with me, but I found that making suggestions to gastroenterologists about what was wrong with me or what tests I thought I needed was very unhelpful. When doctors are convinced you have IBS, it seems to me that pointing out your symptoms suggest otherwise just irritates the doctors and makes them stick to their diagnosis even more. In the end I realised that the only way to find a doctor who understood that something more serious was going on was to find a new doctor, one who would realise it was serious without any additional prompting from me. I just kept requesting new referrals until I found doctors I liked and trusted.

I'd keep trying with the amitriptyline if you can. It does have a lot of side effects, but it can treat so many things as well. I take a high dose, but its effects weren't immediate, it was several weeks before I could feel all the benefits. It won't treat Crohn's itself of course (if that's what you do have), but the meds that treat Crohn's have side effects that (for me at least) were so so much worse than the side effects I got from amitriptyline. You have to have a clear diagnosis before most doctors will prescribe steroid treatment, because you need to know the steroids stand a chance of working - the risks are so bad that it's not worth trying them unless you have to.

It is very difficult to get a diagnosis, and can take a while, so don't be too disheartened if you find yourself dismissed by doctors now. A lot of us have had to go through that experience, unfortunately, but most do end with a diagnosis and consequent treatment plan eventually. If a doctor doesn't take you seriously, don't let it get you down or let yourself get annoyed by him/her, just move on to someone else, if you can.