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Crohn's Disease Forum » Support Forum » Vent Away » Rheumatologist appointment, disappointed :(


09-17-2013, 05:07 PM   #1
Ihurt
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Rheumatologist appointment, disappointed :(

Well I went to a rheumatologist today. I told him of all my symptoms ( very bad intestinal pain, severe muscle pains at times, some joint pain, headaches, severe fatigue). I point blank asked him if this could be crohns or some form of IBD. He said that these issues can all be present with lots of diseases, that they are not specific to crohns. He said fibromyalgias and chronic Fatigue and IBS can have a lot of these symptoms as well. He said since he was not a gastro doctor he could not really help with the whole figuring out If this is crohns or not. But he did say that Crohns can only be diagnosed through biopsy and that my colonoscopy was clear so there is not much to go on there. I guess he is leaving that up to my GI doc. So back to square one. I did ask him to check my sed rate and C-reactive protein levels though. I am just at a loss. I mean I am in pain ALL the time now, no reprieve lately at all. I sit with my heating pad 24/7. Basically this doctor told me there is NOT going to be a quick fix for my issues, that I am going to have to deal with them. He suggested I see a physical therapist to help get me on a exercise program to maybe help with the immune system. He said I would have to start out very slowly. I am not sure about that. I mean how the hell am I suppose to exercise when I am in so much pain and have to sit half the day or more with my heating pad just for a tiny bit of relief from the intestinal pains?? I have another apt with my Gastro doc in October. I just am getting so tired of all this. I have come to the conclusion that we live in a very ignorant society and that doctors really do not know much. At least this guy admitted it somewhat. I feel so lost and let down( once again)...
09-17-2013, 05:54 PM   #2
Trysha
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Hi
So sorry to hear of your continuing problems.
I can resonate with you regarding all the pain and discomfort, I have been there a lot lately.
There does not seem to be much that can be done.It looks like a guessing game.
Today my GP has ordered an MRI of the spine to check things out. Never had this before so it will be an experience I have no doubt....a noisy one!
My crohn's has been flaring and it seems the bone and joint aches as well as back ache coincide with the flare.
Heat helps and occasionally I take a couple of regular strength tylenol which can help but I do not want to take any analgesics on a regular basis since I have a degree of renal failure.Too much catch 22.
Just because a colonoscopy is clear does not mean that there is nothing wrong.
Have you had other tests like MRE, Pillcam etc..
You cannot continue in your present situation and it looks like time to get back to your GI.It is not too long till October but if the pain is bad call and let him know you are suffering and need help.No one should have to endure all this.
If you feel he is not helping you then find another GI.They are so pivotal in crohn's diagnosis.
Do you have any doctor you feel you can trust? if so go talk to them.
Feel better soon
Hugs and best wishes
Trysha
09-17-2013, 06:28 PM   #3
fozheart
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Wow ihurt...reading this as my heating pad is in the microwave! Today I saw my Colon surgeon, and he ended our visit by telling me that he thinks my mixed connective tissue disease may be the culprit this time of my GI problems! You really gave me a lot of support when I joined this forum, and now I hope that I can help you in some way. I understand how lost and let down you must feel right now, after hoping to get some kind of an answer..... Take a deep breath and maybe a pain pill? I am going to go through your threads, to get an idea of all that you are dealing with. Keep your chin up- tomorrow is a new day! Sending hugs!
09-17-2013, 06:50 PM   #4
Ihurt
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Thanks Trysha and Fozheart for the kind replies and support.

Trysha: I have had these tests so far; Abdominal ultrasound, MRE of the small bowel, CT scan of abdomen with only IV contrast, colonoscopy, stool tests, blood work.) The only thing I have not had done was the pill cam. I may ask my GI about this, but the only way I can complete it is without drinking the prep. I am guessing since the pill cam only is looking at the small bowel a liquid diet the day before should be sufficient. I of course have to check with my insurance to see if they will cover it too. I just don't know what else to do. I thought about seeing another gastro doc, but honestly, what else is he or she going to do?? I mean if the tests are not conclusive, then I will still be in the same boat I think. I trust my regular primary care doc, she is wonderful, but she is in the mind frame that I avoid anymore tests. This is because every test I have had has set me back horribly with my other health issues by complicating things.

Fozheart: Thanks for taking the time to look into my issue, that is kind of you. I am so glad I was able to help you in any way as far as support goes. That is what we are all here for, to support one another. It is so difficult being sick and not knowing what is really wrong. Then to be told sometimes there are no answers or clear cut diagnosis's is really disheartening. I am unable to tolerate pain meds, and most meds for that matter. I can take Tylenol if I really need to, but it only helps so little that I just use the heating pad. I cannot tell you how many heating pads I have ran through Lol! I guess they are not really intended for constant use .
09-17-2013, 10:45 PM   #5
fozheart
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Does the heat really help your intestinal pain? If you have inflammation, I would think it would make it worse. I am wondering if your rheumatologist has ever had you on prednisone, or if your GI has ever tried it, just to see if it helped. I wonder if a barium enema would help, or the small bowel x-ray series. (I was reading through some of your older threads, and you mentioned the pain is worse after you eat, and before you have a bowel movement.) I don't know where in Chicago you are, but it is a shame that your GI has not referred you to another doctor, since he can't figure it out! ( My GI is now sending me to a medical college, as he says that they have more advanced testing equipment.) Last question is that I am wondering if you are on a low residue diet?

I am sorry that you have so many things going on! You have got to find a doctor that thinks out of the box, and looks at everything, but easier said than done.

About the exercise.... it IS so important, even just a little. Can you take a short walk once or twice a day? Maybe that would help move things through your stomach. As for the joints and muscles, if your doctor sent you to physical therapy, that would be awesome, especially having connective tissue issues. Your muscles need to support your joints. If your insurance will not pay, you can also google My RA (rheumatoid arthritis) Fit Kit.

I know you are sick of all of this. I probably didn't help, but I'm in your corner!
09-17-2013, 11:20 PM   #6
lizbeth
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Hello Ihurt, I can understand your frustration after the rheumy appointment as I had a similar experience. I find I'm beginning to lose faith in drs as more often than not they don't seem to have any answers and recently I was told I didn't have crohns but more likely IBS. I paid for a private appointment cos there is a long waiting list and I was in agony, back upper and lower, SI joints, hands and knees, not to mention abdo. I found out I had OA in my knees, (already knew that about my back and hands), he didn't tell me anything new and that the joint pain was not associated with my crohns. That was the end of the appointment. It seems weird if they aren't related that when I get a bad tum my joints and especially my low back are unbearable.

The PT is a good idea, find a good one that will look at the whole body, it is amazing what even a little exercise can do for the body, you might be surprised at how much you can manage to do. Good luck and the very best wishes for a better health.
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09-18-2013, 06:50 AM   #7
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I'm sorry you didn't get any help. I'd be wary of a doctor talking about fibromyalgia and IBS and Chronic Fatigue - they're all diagnoses that doctors use when they don't know what's wrong, and often imply doctors aren't taking their patient seriously. I'd be careful if he's trying to put you into that sort of category.

I think he makes a good point about there being no quick fix though.

Clearly, something is very wrong with you physically, medically.

There is always the possibility, however, that what is wrong with you may not be detectable by any medical tests currently available, and it may even be that you have an illness which just hasn't occurred in other people - or at least not in enough people for it to be officially recognised. Some of my symptoms so far fall into this category. Although I have been diagnosed with a couple of recognised conditions, some of my symptoms remain unexplained and, like you may perhaps have to do, I have come to accept that I may never get a diagnosis that explains everything.

Is it that you want a diagnosis to provide answers, or is it more about wanting relief from pain? Even if you were diagnosed, it wouldn't necessarily follow that your symptoms can be treated effectively, but on the other hand, it may be that even without a diagnosis, your symptoms could be treated.

If you're mainly looking for pain relief, I would highly recommend you risk trying more medications. There are an awful lot of treatments out there. I have been overwhelmed by the benefits some medications have brought me, but I did not find them without going through dozens of medications that did me no good, and I did have a few very bad reactions along the way. It was worth it for me though. If you can take the risk of trying new meds, try them at higher doses than perhaps you did before, or persist in sticking with a drug treatment for a longer period (many meds take a long time to have their full effects become evident, and many side effects taper off if you stick with a drug for a while) there is hope that you could find something that works for your pain relief. Don't forget that some side effects can be countered with other meds. I know there is concern surrounding the problem of treating side effects with yet more medications, but it has proved effective for me and helped me stick with drugs that I would have given up on perhaps, if I hadn't found out that I could treat side effects effectively.

I hope you don't miss out on the possibility for treatment because some negative reactions have led you to be afraid of meds - you're not necessarily "sensitive" to all medications.

I'm so sorry you're not any further forward. If I were in your position (and, although my symptoms are/were very different, I have been in your position... and still am concerning some symptoms) I think I would, at this point, put aside the quest for diagnosis and instead put my efforts into looking for effective symptom relief. You may have very different priorities, so perhaps my advice isn't helpful to you, but I think that that's what I would do if I were you.
09-18-2013, 08:01 AM   #8
Ihurt
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Thaks everyone for the replies.

Fozheart: As far as tests go, I remember my GI saying that the barium tests are ok, but since they have developed the colonoscopy which is WAY more accurate, they seldom use the barium test anymore. So seeing that my colonoscopy was clear, I think the barium enema test would be a waste. My diet is pretty bland. This is my basic daily diet. Breakfast: 5 small ( like 3 inch pancakes) and a half of banana, cup of weak bluberry herbal tea. Lunch: a couple thin pieces of turkey breast, half of an apple peeled and chewed well, and a couple small pieces of avocado. Snack: a small amount of plain organic greek yogurt with a small amount of granola on top. Dinner: Either chicken breast roasted or Turkey, very soft cooked squash or potatoes, and a vegetable cooked very very soft, usually carrots or greenbeans. Once in awhile I will snack on a couple gluten free cookies and sometimes sweet potato chips. That is my basic diet. It is pretty clean, I eat as organic as possible as well. Oh I also have been gluten free for the last 6 years. As far as my Gastro doc referring me out, well he keeps saying that my tests are not showing anything too much at the moment. He keeps saying IBS since that is what they say when they have no definitive answers it seems. He thinks all my health issues are related somehow though, but said it is so complex. He said most of the people he sees that have IBS or other bowel issues also have other manifestations like muscle pains, fibro,and fatigue. He said it seems to go hand in hand. I am just at a loss. I will look into the PT though, maybe that will help some.Thanks for the support, I do truly appreciate it! I will look into that RA kit too, thanks.

Lizbeth: Thanks for the reply. Yes, it is frustrating. I think agree, a lot of doctors just do not understand these complex diseases I guess. I am sorry you are suffering as well. I wish there was an easy fix. I am going to really try and do the PT thing, I think maybe it will help. I just have to find a way to get my intestines to feel better so I can do it..

Unxmas: Thanks for the reply. Yes, I kind of seen that one coming when I went to the Rheumy doc yesterday. I knew he was going to lump me into that Category. That is where the docs usually run when they cannot figure something out. I agree, there is no quick fix otherwise I would be well already I suppose. I am more at a point where I would just like relief already. I of course would like a diagnosis, but I do not even think it is really a matter of having a name. It is more of my mind thinking, Gee, what if this is crohns or something else that is bad that they are missing? That is what keeps me trying to want to figure this out I guess. Well, I have tried so many medications already. It seems the doctors all offer the same meds to me. The rheumy doc mentioned me taking klonopin to help me sleep better. I tried this before for my intestinal pain and it did not help. But I guess I could try it and see if it will help me sleep better. He also mentioned me taking the drug Ritalin. He said something about it maybe giving me more energy. I was not sure about that one. He said we would revisit this later on. If I could find a medication that my body could tolerate and it helped me, I was be soooo happy!!! I mean honestly, getting relief is my # one goal at this point.
09-18-2013, 08:09 AM   #9
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Ihurt you are not eating enough! You need more calories than could be in that diet. (Btw I can't remember quite what bowel symptoms you have, but could it be that maybe some of your pain is from partial constipation? If you're not eating enough, your bowel will slow down, even if you are still eating some high fibre foods.)

Does the heat really help your intestinal pain?
Heat is very effective - I'm attached to my hot water bottle as I type, lol. It's especially good for cramping pain, I believe that's because the warmth relaxes your muscles.

Ihurt - have you tried opiate pain meds? Have you ever tried morphine? I know that's not something you'd enter into lightly, but with things as bad as they are for you, it might be a way to get some relief. Start with codeine, which is much more mild than morphine maybe. It makes me feel so much better, and I don't get any side effects from it, though tolerance is a problem. I'm having another surgery in October, and believe me I'll be making good use of morphine!
09-18-2013, 01:01 PM   #10
Ihurt
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Unxmas: I don't think I am constipated, I use to the toilet everyday( usually in the morning) and I get a sufficient amount out, so that is not the issue. My symptoms are intestinal cramping and having that pain and feeling like I have to always go. Heating pad does help me quite a bit.

Well, I have tried Tylenol 3 before, but it constipates the hell out of me, and that was with only taking 1 pill a day for a couple days. I know there is No way any of my doctors would even prescribe me any morphine or other pain meds. They will not do it. I mean I was lucky I got my regular primary care doc to prescribe me the Tylenol 3's with codeine. They are so particular when it comes to prescribing pain meds...

I probably do need to eat some more, but I am maintaining my weight so that is good...
09-18-2013, 03:14 PM   #11
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Unxmas: I don't think I am constipated, I use to the toilet everyday( usually in the morning) and I get a sufficient amount out, so that is not the issue. My symptoms are intestinal cramping and having that pain and feeling like I have to always go. Heating pad does help me quite a bit.

Well, I have tried Tylenol 3 before, but it constipates the hell out of me, and that was with only taking 1 pill a day for a couple days. I know there is No way any of my doctors would even prescribe me any morphine or other pain meds. They will not do it. I mean I was lucky I got my regular primary care doc to prescribe me the Tylenol 3's with codeine. They are so particular when it comes to prescribing pain meds...

I probably do need to eat some more, but I am maintaining my weight so that is good...
If pain meds constipate you but you really need them, you can take laxatives or stool softeners to treat the constipation. If you really need pain relief as badly as you do, I would seriously consider taking a higher dose of codeine and treating the constipation with something else. I take codeine 30mg tablets, which are pure codeine, I believe Tylenol also contains what in the UK is called Paracetamol and in the US called acetaminophen. The Tylenol may have caused you stomach problems from the other ingredient rather than the codeine itself, though it would have been more likely to have caused you nausea than constipation. Are your doctors really that opposed to codeine? They obviously don't understand the amount of pain you're in!

There are various types of constipation, even if you're going every day it may be that you're not emptying your bowel fully, which could be why you feel like you always have to go - and it could be that that urge to go is causing the cramping. (I'm only guessing, obviously, but it's a possibility.)

I have no idea how you maintain weight on that! I eat junk like chocolate and high fat foods like butter every day and I still can't get my weight anywhere near high enough to be healthy. I really can't get my head around how you could maintain a healthy weight on that diet!
09-18-2013, 06:37 PM   #12
Ihurt
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Hey Unxmas,

Yeah, it is rare to find a doctor here who will prescribe you a pain med unless you 1) have had surgery, or 2) you have cancer. I mean my regular primary care may be willing to give me something. Now when you say you take codeine, is it just pure codeine, no acetomiophen in it? I mean she may give me a script for some of those. I will have to ask when I see her in the next couple weeks. Thanks for suggesting it, I never even knew you could get it without the Tylenol in it.

Well, I do also add butter to my veggis and potatoes and squash when I eat it. I also put some butter on my pancakes too, and sometimes I add a little pure maple syrup. I will admit, when I am having my bad times where I do not feel like eating much, I will tend to lose weight. But as long as I eat enough of an amount throughout the day, I seem to do ok. Also, when I eat the yogurt, I eat the whole milk fat one, not the fat free one. So that helps too I am sure.

I am glad you have a good doctor who at least treats your pain, that is good. I will talk to my regular doctor about the codeine for sure. Thanks again for the support and advice..
09-19-2013, 03:59 AM   #13
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Yes, pure codeine is better because the acetaminophen causes nausea and can aggravate stomach inflammation, if you have any.
09-19-2013, 09:43 PM   #14
fozheart
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I am still thinking of you, ihurt, and I hope you find someone who will help you. A close friend passed away, so things are busy and sad. Please just don't give up. Keep bugging those doctors- one of them is going to have to take responsibility, and at least try to give you some pain relief!
09-20-2013, 07:30 AM   #15
Ihurt
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Thanks! Don't worry, I am not giving up, that is for sure.. I am too stubborn for that
09-20-2013, 05:26 PM   #16
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Fozheart I'm really sorry to hear about your friend .
09-21-2013, 07:46 AM   #17
Ihurt
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Fozheart: I am sorry about your close friend, my heart goes out to you! You are definitely in my thoughts and prayers! Big Hugs to you!!







I am still thinking of you, ihurt, and I hope you find someone who will help you. A close friend passed away, so things are busy and sad. Please just don't give up. Keep bugging those doctors- one of them is going to have to take responsibility, and at least try to give you some pain relief!
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