Undiagnosed Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

I did go to the ED Some colonic thickening, but should be ok on just the antibiotics I'm on. Sent home w/more pain meds. weird thing was ketones in my urine, even after a bag of saline, but I think that's just from not eating much.
 
They found colon thickening and didn't offer you anything like prednisone? Hmm. I hope your current meds and the new pain meds help, but if not, you might want to ask your doc for a short course of pred too.
 
Wildmtnhoney,

I'm glad you got checked out. I think you are right about the ketones. Take it easy on yourself. For me, I always feel a bit better once I have been to get things checked on. It seems to relieve the stress of not knowing.

Wishing you well,

cmack
 
Hello, I am so glad to have found these forums! I have no idea what I have, but one my doctors thinks it is Crohn's so I have been poking around these forums (and other sites) to learn more. The list of safe foods was really helpful and let me find a few new things to try. Not sure you guys want to hear the whole thing as everything is pretty uncertain now, but I wanted to say hello and thank you for being here.

I do have one question that I was hoping for help with. If the do an colonoscopy or something similar, do they need to catch me at my worst to be able to see the problem? Getting to a specialist has been slow and I am worried they won't be able to figure out what is going on bc I am now feeling merely cruddy instead of horrible.
 
Dahlia,

Welcome, you are in the right place. I'm glad you found us. We all stick together around here.

I'm sorry to hear that you are feeling so bad. Yes, according to some people it might be easier to spot if it is at its worst, however crohn's can manifest itself anywhere between the mouth and the rear end so it may be hard to spot anyway. It loves to play hide and go seek.

Stick around and you may find the answers and support you are after. There are a lot of knowledgeable, caring people on this forum.

By the way my favorite flower has the same name as you.


welcome again,

cmack
 
Could you still have Crohn's if colonoscopy endoscopy and biopsies we're all normal. The only thing on the report I got from the hospital was possibly proctitis but nothing more was ever said about that
 
Oh gosh, Wildmtn, that's not good. I hope you start feeling better, soon. You know what we always say on the forum - if you're questioning whether or not to go to the ER, you should just go to the ER. Don't overthink it, just go. That's my opinion. If you're insistent on waiting, maybe use that time to put together a bag to take to the ER, with slippers and things to keep you occupied (I always have a little sudoku book in my bag) and phone charger and whatever else you'd need. And whether or not you go in, I hope you feel tons better very soon! Keep us posted, worried about you.



Cat a Tonic,

I have had a really bad 2 weeks went to A&e (er) last Thursday and was send home to be told they can't help me need to wait and speak to my consultant in 2 weeks
 
I had a battery of tests done ten years ago, all came back normal. Then this year I repeated them they found scarring on my ileum terminal on the MRI and CTE scans. But the colonoscopy still came back normal and the gastroscopy. So keep pushing for tests. Normal doesn't mean nothing is happening.
 
I had a colonoscopy and endoscopy last Thursday with biopsies and they all came back normal so I have been told it's just IBS. But I think it's more then IBS I have Diarrhea for over 3 months and have low iron and high inflammation markers I'm in so much pain I'm also losing weight 😐😣🙁 I feel like just giving up I don't think my doctor 👨⚕️ even cares anymore. I didn't even get to see a gastroenterologist just a medical Doctor at the hospital

Have you asked for or received any of the small bowel image tests? If you are having these symptoms here very similar to how I was before getting diagnosed. High CrP, very low iron, chronic fatigue. Constant chronic pain in the colonic region. You might demand more and keep fighting for what you think is a more complete picture of your GI tract problem.
 
Blu, I'm sorry to hear it. It seems like not all doctors and not all ERs are created equal. Some will brush you off and send you home, others will take you more seriously and try to treat you. For my flare that started back in July, by August I was doing really badly. I ended up in urgent care needing IV fluids, then a few days later I went to the ER again needing fluids. At that point, I asked the ER doc if there were any tests she could do, but all she did was bloodwork and then sent me home after I had gotten my IV fluids. Third time was the charm, I went to the ER again a few days after that, again feeling awful and needing fluids. This time, they saw that there was a pattern where I was getting worse (by that point I couldn't digest any food and was having 20+ watery BMs per day and had lost 17 lbs in about a month), so they admitted me to the hospital for 5 days and did a colonoscopy and a few other tests, and they also put me on steroids and a liquid diet.

So, if one ER visit isn't fruitful, it might be beneficial to go back and let them know that you're doing worse and ask for more help. You shouldn't be left to suffer like that. And if the ER you went to wasn't very good, maybe try going to a different one.
 
No I have not had any small bowel image tests just just the colonoscopy and a endoscopy with biopsies. And they showed nothing
 
Oh and my Doctor 👨⚕️ just said that the biopsies prove I don't have Crohn's or ulcerative colitis or even cancer so it's just IBS apparently. But I'm not so sure I have spent the last 3 nights in very bad pain and not being able to lie down it was so bad.
 
Oh and my Doctor 👨⚕️ just said that the biopsies prove I don't have Crohn's or ulcerative colitis or even cancer so it's just IBS apparently. But I'm not so sure I have spent the last 3 nights in very bad pain and not being able to lie down it was so bad.
Maybe you should go for a second opinion
 
Oh and my Doctor 👨⚕️ just said that the biopsies prove I don't have Crohn's or ulcerative colitis or even cancer so it's just IBS apparently. But I'm not so sure I have spent the last 3 nights in very bad pain and not being able to lie down it was so bad.

That is a big load of bullcrap! It doesn't prove either. Crohn's often hides where these tests cant reach to see. Definitely get a second or even third oppinion. Keep trying until somebody gets it. :ybatty: Never quit!

I wish you the best,

cmack
 
I'm sorry to hear things are so difficult, blu. I hope you get some help soon.

Thanks for the welcome. I'm very glad I found this forum. Today I had my first appointment with a GI nurse. Doctors were booked 2 months out but she was very nice and helpful. Took a lot of time and listened. Oh, short version of my history is that about 3 weeks ago I had what seemed to be a mild bacterial infection in my bowels (no formal diagnosis but pus and elevated WBC) and it resolved with a clear liquid diet. Things improved but I was still very tired and had no appetite and that hasn't changed in the 2.5 weeks since then.. and then when I tried to eat some cooked vegetables and it was like my body forgot how to digest food. Came out like I swallowed it accompanied by D, lots of mucus, and foamy craziness. I am ok if I stick to safe food (rice, fish, applesauce etc) in small amounts but all attempts at fresh fruits (except banana) or veg have failed.

Today the nurse ordered a colonoscopy and an h pylori test (history of stomach pain from nsaids and steroids). She also told me to stick to a low residue diet and the 1200 (or more) calories I am aiming for is fine. They were able to get me in next week for the colonoscopy so I hope they can figure out what is going on and help things settle down. I am still feeling very tired and can't do normal things, even driving is difficult, and I am hoping they will be able to help me. I am really glad to get things started as everything up until now has been a muddle.
 
I'm sorry to hear things are so difficult, blu. I hope you get some help soon.

Thanks for the welcome. I'm very glad I found this forum. Today I had my first appointment with a GI nurse. Doctors were booked 2 months out but she was very nice and helpful. Took a lot of time and listened. Oh, short version of my history is that about 3 weeks ago I had what seemed to be a mild bacterial infection in my bowels (no formal diagnosis but pus and elevated WBC) and it resolved with a clear liquid diet. Things improved but I was still very tired and had no appetite and that hasn't changed in the 2.5 weeks since then.. and then when I tried to eat some cooked vegetables and it was like my body forgot how to digest food. Came out like I swallowed it accompanied by D, lots of mucus, and foamy craziness. I am ok if I stick to safe food (rice, fish, applesauce etc) in small amounts but all attempts at fresh fruits (except banana) or veg have failed.

Today the nurse ordered a colonoscopy and an h pylori test (history of stomach pain from nsaids and steroids). She also told me to stick to a low residue diet and the 1200 (or more) calories I am aiming for is fine. They were able to get me in next week for the colonoscopy so I hope they can figure out what is going on and help things settle down. I am still feeling very tired and can't do normal things, even driving is difficult, and I am hoping they will be able to help me. I am really glad to get things started as everything up until now has been a muddle.

Welcome. I hope they are able to help you soon.
 
Frustration w specialists

I don't know 🤷♀️ if that is even possible to do as I don't think anyone believes me

Reading your story breaks my heart! I have been and still am in your position. Pain lower right side, runs, colonoscopy comes back negative, pain is still there, no one believes you. Finally convinced local GP to ring specialist, specialist quotes "4 surgeons have seen her and refuse to do surgery!"GI's response to my treatment. 4 surgeons I visited to source reason of the pain, there were no tests conducted by anyone except the GI I see now. Although this GI I have been seeing him for 10 years, still cannot find the cause of my pain! All the symptoms of crohn's, but no biopsy to confirm, so, he cannot call it crohn's!!!!:stinks:
Trouble with 2nd opinions, they always refer to the notes and suggestions of the previous opinion. So, how does one overcome that?
I feel like you do, NO ONE BELIEVES ME.
Would all the experienced suffers please explain to us how to handle the situation? Many thanks for listening to my rant!
 
Last edited:
HI,lacey,

Every doctor probably does look at old notes. Every doctor is human and we are all different right? Humans screw up and so do doctors. Probably not even knowingly. Maybe they just don't get it. Try a different doctor and explain what you didn't like about the last one in the consult. I have had success in some ways with this. Just tell how you feel. Every doctor is going to have a different approach.

I hope you feel better,

cmack
 
Lacey,

I wish I had some amazing advice for you, but unfortunately I don't. What do I do when doctors don't believe me? Usually go home and cry.....sometimes punch things. 😬 I think it's important to remember that there are doctors out there who do want to help you, but there are many who just don't seem to care and are unwilling to put in the time and effort. I've had doctors flat out tell me that I'm making up my symptoms, or that I'm just depressed, or that I just need to exercise more, etc. You never know what you're going to get when you see a new doctor! And it's so frustrating! My problem is that I've told all the doctors I've seen that my symptoms started a few weeks after my mom passed away. I thought this info would be helpful, since crohns and other autoimmune diseases often flare after a stressful event. But some doctors just use it as an excuse to say that I'm depressed and they can't help me. Keep in mind, my mom passed away over three years ago, and some doctors still try to use it as an excuse. My husband told me to not even mention that to my next doctor. I guess my advice is to just keep fighting! But I know that's easier said than done. It sucks! But you can vent to us anytime. 🙂
 
Lacey,

I wish I had some amazing advice for you, but unfortunately I don't. What do I do when doctors don't believe me? Usually go home and cry.....sometimes punch things. 😬 I think it's important to remember that there are doctors out there who do want to help you, but there are many who just don't seem to care and are unwilling to put in the time and effort. I've had doctors flat out tell me that I'm making up my symptoms, or that I'm just depressed, or that I just need to exercise more, etc. You never know what you're going to get when you see a new doctor! And it's so frustrating! My problem is that I've told all the doctors I've seen that my symptoms started a few weeks after my mom passed away. I thought this info would be helpful, since crohns and other autoimmune diseases often flare after a stressful event. But some doctors just use it as an excuse to say that I'm depressed and they can't help me. Keep in mind, my mom passed away over three years ago, and some doctors still try to use it as an excuse. My husband told me to not even mention that to my next doctor. I guess my advice is to just keep fighting! But I know that's easier said than done. It sucks! But you can vent to us anytime. 🙂
Amen
 
akgirl,

I'm sorry about your mom. I'm lucky to still have mine, albeit fairly feisty! We look after each other. You aren't being treated right by the medical professionals. I live the same reality some days. thank God I have an awesome GP. Otherwise I would have just given up. keep on fighting the good fight my friend!

I am only a few keystrokes away if you need a friend that understands, :ysmile:

cmack
 
improved message

Thank you for the encouragement! I feel like I don't even want to keep my next appointment with GI next week. Why? Again I don't feel like he cares or is paying attention. Although Mesalazine was doubled 3 weeks ago to 4 tables nightly, I now feel the difference. The pain is not so sever.
Has anyone else had the problem on a light bm one day the next day the pain is severe in the lower right side, then a large bm reduces the pain? I would like some feed back on this issue. Thanks to everyone.
 
Last edited:
Hi to all the new people - glad you found us, but as always, so sorry for the symptoms that brought you here.

little update on me...went to my gp's office yesterday, and they ran a stool sample, which came back negative for everything they checked (which was quite a long list, including cdiff). They also gave me an IV of fluids in office (sooo happy this current office can do it in office rather than send me out!) because I was clearly dehydrated...again. Have some pedialyte on hand now. However I'm still having watery D today, and now I'm having more nausea and some upper belly pain that is new (oh goody, something NEW!). Poor dh is having to rush the kids around everywhere because I have been too dizzy with dehydration to drive. Interesting thing: In all the years that this has been going on, I have never really lost weight with the D, but this time I am. Bummer
 
Hi to all the new people - glad you found us, but as always, so sorry for the symptoms that brought you here.

little update on me...went to my gp's office yesterday, and they ran a stool sample, which came back negative for everything they checked (which was quite a long list, including cdiff). They also gave me an IV of fluids in office (sooo happy this current office can do it in office rather than send me out!) because I was clearly dehydrated...again. Have some pedialyte on hand now. However I'm still having watery D today, and now I'm having more nausea and some upper belly pain that is new (oh goody, something NEW!). Poor dh is having to rush the kids around everywhere because I have been too dizzy with dehydration to drive. Interesting thing: In all the years that this has been going on, I have never really lost weight with the D, but this time I am. Bummer
Hope you get better soon
 
I'm so sorry your doctors aren't listenening to you, Lacey and Lissy. I had that happen a lot with a back pain problem that started a few years back and I ended up in tears many times over doctors being horrid. With pain they are really ready to believe you are lying and just want drugs. I now have a good doctor but I didn't find him until nearly 4 years after it started. I'm still not back to normal, and the GI problems are getting in the way, but I have made a lot of progress in the past year. The pain and the impact on my life was really bad and the doctors not believing me (and not helping me) made it so much worse than it needed to be. Keep trying. I hope you find a good doctor, too.

The only thing I can think of that helps a bit with an unknown doctor is bringing someone with you. It seems to make them take you more seriously, especially if that person has seen you in pain and struggling.
 
I am OK, thank you cmack. My back doctor is really helping and I am off to a good start with the GI people. There was some weirdness early on with my normal doctors but the GI visit went well. I brought a family member with me who is a doctor (and has been helping me throughout) and it seemed to help both because he told them things I forgot and because it seemed to make them take me seriously because he took me seriously. I don't think that should be necessary, but I am glad he was willing to help.

I have been very tired and don't have an appetite, but as long as I stick to safe food (very short list) digestion is ok. I haven't needed IV fluids and the is pain gone, just discomfort now. Not at my best but definitely OK :)
 
I'm sorry to hear things are so difficult, blu. I hope you get some help soon.



Thanks for the welcome. I'm very glad I found this forum. Today I had my first appointment with a GI nurse. Doctors were booked 2 months out but she was very nice and helpful. Took a lot of time and listened. Oh, short version of my history is that about 3 weeks ago I had what seemed to be a mild bacterial infection in my bowels (no formal diagnosis but pus and elevated WBC) and it resolved with a clear liquid diet. Things improved but I was still very tired and had no appetite and that hasn't changed in the 2.5 weeks since then.. and then when I tried to eat some cooked vegetables and it was like my body forgot how to digest food. Came out like I swallowed it accompanied by D, lots of mucus, and foamy craziness. I am ok if I stick to safe food (rice, fish, applesauce etc) in small amounts but all attempts at fresh fruits (except banana) or veg have failed.



Today the nurse ordered a colonoscopy and an h pylori test (history of stomach pain from nsaids and steroids). She also told me to stick to a low residue diet and the 1200 (or more) calories I am aiming for is fine. They were able to get me in next week for the colonoscopy so I hope they can figure out what is going on and help things settle down. I am still feeling very tired and can't do normal things, even driving is difficult, and I am hoping they will be able to help me. I am really glad to get things started as everything up until now has been a muddle.



Thank you Dahlia,

I have an appointment come through for my new consultant for 5th April xx keeping everything crossed xx
 
Dahlia,

That's cool to have a doctor in the family.I wish I had one in mine. I bet that was a huge help! At least there are some safe foods for you. You seem to be getting headed in the right direction.

Hang in there,

cmack
 
A big question. During a pain episode, I have 20mgs of pain med which I will take. In an hour if there is no relief, I will take an additional fast acting 5mgs. Now, what is considered too much and how much pain medication have others taken to ease the pain?
Pleae advise, many thanks
 
Only take it slowly. Take it only as recommended, If you feel relief that's good, then lay down and sleep. if it isn't enough after 2 hours, take the recommended follow up dosage. What did they give you? also be sure to bring it into the bedroom so you don't have to stumble around in the dark. Maybe even a plastic container for the water. Glass can hurt. The best thing is to be in bed when it hits you.
 
Follow the instructions. If you don't get relief, call your doctor.
Initially, I was able to ring the doctor, but, Over the last two years, after bowel resection for vaginal fistula caused by diverticulitis he thought my problems were over. After the surgery, my next appointment was for 6 months! I let him know right then that it was too long of a wait to see him. GI insisted 6 months. In the meantime, I would e-mail, text, ring, no response. Next visit very brisk 15 min. Next visit slightly longer. The last visit was even longer, then he stated, I think you have Crohn's, but no biopsy to prove it. In the meantime, I live with the agony and pain of Crohn's. Taking Mesalazine 4 tablets, amneotretraxate 15mgs weekly, 5 mg's cortisone, and oxycontin 20mgs, 10 mg, & 5 mg. A range of medications yet the pain is persistent. Almost house bound, not able to do much and being miserable. I do have an appointment with him in a week, but almost dreading it. I have been making lists to discuss with him. So, ring the doctor when I'm in pain? There is no response.
I've been thinking of asking him if he lost interest in helping me with my pain.
I have also been under the guidance of a pain specialist, initially for my back, but now discuss the bowel issues as well. He is the one who suggested the oxycontin as Tramadol was giving me the runs which I do not need. So, ring the doctor? Perhaps I can get the entire forum to ring him for me! The local GP's office just suggest, go to the hospital if you are concerned!
In our area most of the doctors have removed the hospital visiting rights, so, we have to go to the public hospital if problems arise. If the GP sends us, we can go to the private hospital 2 hours away! Anyway, thank you for the advice.
 
Initially, I was able to ring the doctor, but, Over the last two years, after bowel resection for vaginal fistula caused by diverticulitis he thought my problems were over. After the surgery, my next appointment was for 6 months! I let him know right then that it was too long of a wait to see him. GI insisted 6 months. In the meantime, I would e-mail, text, ring, no response. Next visit very brisk 15 min. Next visit slightly longer. The last visit was even longer, then he stated, I think you have Crohn's, but no biopsy to prove it. In the meantime, I live with the agony and pain of Crohn's. Taking Mesalazine 4 tablets, amneotretraxate 15mgs weekly, 5 mg's cortisone, and oxycontin 20mgs, 10 mg, & 5 mg. A range of medications yet the pain is persistent. Almost house bound, not able to do much and being miserable. I do have an appointment with him in a week, but almost dreading it. I have been making lists to discuss with him. So, ring the doctor when I'm in pain? There is no response.
I've been thinking of asking him if he lost interest in helping me with my pain.
I have also been under the guidance of a pain specialist, initially for my back, but now discuss the bowel issues as well. He is the one who suggested the oxycontin as Tramadol was giving me the runs which I do not need. So, ring the doctor? Perhaps I can get the entire forum to ring him for me! The local GP's office just suggest, go to the hospital if you are concerned!
In our area most of the doctors have removed the hospital visiting rights, so, we have to go to the public hospital if problems arise. If the GP sends us, we can go to the private hospital 2 hours away! Anyway, thank you for the advice.
Maybe you should get a second opinion.
 
A second opinion sounds great, I'm waiting to hear back from all the Western Australian Crohn's sufferers who are part of this forum that I may get feedback regarding the specialists in Perth. Looking forward to hearing from them.
 
Lacey2:

I'm sorry you are having such a hard time. Regarding your pain meds: are you taking OxyContin or oxycodone? The former are timed release medications to be taken two or three times a day (usually every 8 or 12 hours) to give you a constant dose of pain relief (last spring I was on two per day, 15mg). Oxycodone is immediate release, used for breakthrough pain with OxyContin or on its own when pain is not around the clock.

If you are in constant pain, which it sounds like you are, then depending on the quantity of your medications, it would be a good idea to start taking one 20mg tablet twice per day, at 12 hour intervals. Or you could start with a 20mg and a 10mg at the same time. If you only have OxyContin, then you might need something like oxycodone for breakthrough pain since it is an immediate release medication. When I was on OxyContin 15mg twice a day I also used oxycodone for breakthrough pain, and took two 5mg tablets every six hours if I needed them.

There are also transdermal patches for long term pain which you could try. I have found that many GIs don't want to discuss pain as much, so I would confine your discussions about pain with your GI to how much pain, how often, rather than asking what to take for it. Is your pain specialist helpful? It is so difficult when doctors can't or won't give an actual diagnosis.

Please accept my apologies if I have misunderstood your question or what medications you take, and I hope your appointment gives you some answers.
 
Lacey2:

I'm so sorry you're having such a rough time with pain! This isn't entirely helpful, since doesn't "cure" the cause of the pain, but recently I was offered a spinal block (still considering it) by my pain clinic for my deep abdominal pain. The way it was described to me, or that I can recall right now, is similar to an epidural that pregnant women get, but much more localized. My pain is also right lower quadrant (I too have diverticulitis there) and they said they can pretty much block/numb that entire intestinal area with a long-acting agent. They already tried a different procedure on me, where they do a similar numbing agent through the belly itself, but it only reaches so far down, not the organ level, and clearly that is where my pain originates, because this through the skin numbing thing didn't cut it for me. My problem is I have a host of other health concerns, and for one of them I'm on blood thinners which makes having an epidural a REALLY bad idea, or else I have to go off the blood thinner for a few days....which is also not a good idea.
 
That sounds really tough, Lacey. I hope you get a good recommendation for a new doctor.

Cmack - yes, I am really lucky that I could bring a family member who was a doctor this round. He doesn't normally live in my area but he is in town now and able to help. Bringing my non-medical husband to other visits also helped. I didn't bring him early on with my back as he was taking care of the kids... and that was when I had problems being blown off. For my new back doctor, though, we got help from family and my husband could come. I think it just makes them take you more seriously, as it is important enough that an extra person took time off to help. It isn't magic but I think it helps.
 
Lacey,

The oxycodone/acetominophen (Percocet) killed my severe pain at 15mg for the most part. It quickly becomes less useful though as our bodies create new pain receptors due to long term use. That just makes the pain worse. I have been there and back with the pain meds. I am very careful to try to skip a day or two if I can. It seems to help it to keep working well. Kind of like beer if you drink six a day, it makes it feel like nothing happened, when everyone else has a buzz off of two. Yes I had those bachelor days! LOL Seriously though, I agree that you may need to pursue different avenues for treatment.

Best wishes, ;)

cmack
 
akgirl,

I have some of those feelings too. Maybe you need to try to talk to the GP and tell him this stuff. I did and he helped me. I hope these feelings pass. I really like you, especially for your honesty about the situations you go through. You are a great person don't ever forget it!

You can pm me and vent if you like too. I think you are awesome.


Your friend,

cmack
 
akgirl,

You need to talk about how you feel with somebody. I will listen if you like. I think you need to blow off some steam and I could use a little more. LOL

cmack
 
Last edited:
It took me a few years and several dr's to get a diagnosis
I ended up going to an IBD specialist and was finally diagnosed with Crohn's (small bowel) it took testing regular GI's don't do

Okay, great news! But, who is an IBD? PLEASE ADVISE.
What is the difference, and how do they work?
 
Okay, great news! But, who is an IBD? PLEASE ADVISE.
What is the difference, and how do they work?

It is a doctor that specializes in inflammatory bowel disease. I have a gastroenterologist but I also have an IBD specialist because I have had to go off several medicines and they want a doctor who can help better
 
Lacey,

Inflammatory bowel disease (IBD) is a group of inflammatory conditions of the colon and small intestine. Crohn's disease and ulcerative colitis are the principal types of inflammatory bowel disease. It is important to note that not only does Crohn's disease affect the small intestine and large intestine, it can also affect the mouth, esophagus, stomach and the anus whereas ulcerative colitis primarily affects the colon and the rectum.


Hope this clears things up,

cmack
 
Okay, great news! But, who is an IBD? PLEASE ADVISE.

What is the difference, and how do they work?



Like everyone said it's the umbrella term for the diseases like Crohn's/UC.
A IBD specialist only treats IBD... So they know what their looking for best way to treat ect.
 
Thank you for the information, I now know the difference.

How do I go about finding an IBD? My local doctor and almost all in the practice are from South Africa, but, I will ask tomorrow, Monday, as I have an appointment.

Discussions have come up before regarding second opinions, he has always suggested I continue with the GI I have now.
 
Thank you for the information, I now know the difference.

How do I go about finding an IBD? My local doctor and almost all in the practice are from South Africa, but, I will ask tomorrow, Monday, as I have an appointment.

Discussions have come up before regarding second opinions, he has always suggested I continue with the GI I have now.
Maybe you could ask your GP for any recommendations.
 
When I have looked at doctors profiles on the clinic's website, they usually have a little blurb about themselves and what they specialize in. Is that what is meant by an IBD specialist? A gastro who says they specialize in IBD?
 
Today I prep for my first colonoscopy. I don't have an appetite, which should make things easier.... but that nasty smelling gallon of liquid I prepared this morning is a bit daunting. I have a straw, have the gallon prep chilling, and plan on rinsing my mouth out with some strong tasting liquid after each drink. I have also warned my husband that I expect to be unavailable for many hours so he has the kids & dinner. I have also read Dave Barry's column on his first colonoscopy and that made laugh and feel a bit better. Anything else I should be doing to make it easier?

I am still symptomatic (no appetite, no ability to digest any vegetables at all or fresh fruits besides bananas) so I am really hopeful that they will be able to figure out what the heck is going on.
 
Dahlia - I set up a "mini-spa" in the bathroom for myself, I think based on Cat's recommendation? I had sented things (not candles, because dh doesn't like them, but I had popuri) and I had a little tv type tray in the bathroom that I could set my ipad on, so I could read or watch silly youtube when I found myself on the toilet for longer times. I got nice hand soap and hand lotion because I washing so often. I got flushable wipes for my backside. Those little things made the day bearable.
 
Today I prep for my first colonoscopy. I don't have an appetite, which should make things easier.... but that nasty smelling gallon of liquid I prepared this morning is a bit daunting. I have a straw, have the gallon prep chilling, and plan on rinsing my mouth out with some strong tasting liquid after each drink. I have also warned my husband that I expect to be unavailable for many hours so he has the kids & dinner. I have also read Dave Barry's column on his first colonoscopy and that made laugh and feel a bit better. Anything else I should be doing to make it easier?

I am still symptomatic (no appetite, no ability to digest any vegetables at all or fresh fruits besides bananas) so I am really hopeful that they will be able to figure out what the heck is going on.

I watched my favorite comic singing his PSA song about colonoscopies which gave me a giggle. :)

https://www.youtube.com/watch?v=EyN0JH8Q9CE
 
2 cups down, 11 to go tonight. The last quarter of my jug is for morning. It's like lemon flavored seawater. Gross, but at least not quite as bad as Dave Barry's description (mixture of goat spit and urinal cleanser with a hint of lemon).
 
Thank you for the information, I now know the difference.



How do I go about finding an IBD? My local doctor and almost all in the practice are from South Africa, but, I will ask tomorrow, Monday, as I have an appointment.



Discussions have come up before regarding second opinions, he has always suggested I continue with the GI I have now.



You look for big University hospitality or IBD center. Mayo Clinic .. Cleveland clinic
GI's that specialize in IBD general work at those locations
 
Tonight's consumption is done. I am going to ask about the Gatorade prep the next time I have to do this. I had golytely and that is unpleasant stuff. Things I learned, that I didn't see elsewhere:

- 2 straws are better than one
- coffee works really well for a rinse and spit after drinking
- Peri bottle is helpful. Warm water is best. (given after having a baby. Basically bidet in a bottle. Amazon)
 
Tonight's consumption is done. I am going to ask about the Gatorade prep the next time I have to do this. I had golytely and that is unpleasant stuff. Things I learned, that I didn't see elsewhere:

- 2 straws are better than one
- coffee works really well for a rinse and spit after drinking
- Peri bottle is helpful. Warm water is best. (given after having a baby. Basically bidet in a bottle. Amazon)

MoviPrep is absolutely the worst solution I've had to drink in my life next to Volumen barium. Both made me want to gag and vomit. I'm asking for the Gatorade/Miralax prep, too, when I have my next colonoscopy (probably not for another several years; I don't have IBD but I do have a family history of colon polyps). It seems like it's much easier to get down than the prescription prep according to my mom's testimony. The Gatorade really helps cover up the nasty taste of the laxative.
 
I take miralax normally, to counteract my pain pills. I can't taste it. Makes no sense that the prep is so nasty. 3 hours of sleep bc of all those trips to the bathroom.
 
Test done and the doctor didn't see any signs of Crohn's. I think there was some slightly unusual tissue but I don't understand what it was or means. They took some biopsies and I will hear about those later. They said something about maybe it being microscopic colitis, but reading up on it, it doesn't fit most of my symptoms so it seems weird to me. I don't think they saw anything that would explain my symptoms. Hoping there are some other tests or something else they can do. Followup in a couple of weeks.
 
Test done and the doctor didn't see any signs of Crohn's. I think there was some slightly unusual tissue but I don't understand what it was or means. They took some biopsies and I will hear about those later. They said something about maybe it being microscopic colitis, but reading up on it, it doesn't fit most of my symptoms so it seems weird to me. I don't think they saw anything that would explain my symptoms. Hoping there are some other tests or something else they can do. Followup in a couple of weeks.
Hope you get answers soon.
 
That is a big load of bullcrap! It doesn't prove either. Crohn's often hides where these tests cant reach to see. Definitely get a second or even third oppinion. Keep trying until somebody gets it. :ybatty: Never quit!

I wish you the best,

cmack

Thank you Cmack
 
Holy cow it is hard to eat away from home. I never realized how difficult it was for people with digestive difficulties. I've just been walking around oblivious for 40 years. We are out of town for a couple of days and I don't think there is anything I can eat where we are staying. We brought along some food for me to supplement but it turns out that is all I can have. The plain food is too rich or greasy and the low fat food is whole grain plus vegetables so I can't eat that either. I have only had symptoms for a month. I feel for all of you who have been enduring this for so long.
 
Definitely, I would be sunk without the grocery store. I have yogurt, applesauce, bananas, saltines, ensure, and instant Pho (rice noodles and broth). I like having more protein than that, but it will do for a couple of days. I think teriyaki could work, and we may be able to drive out and find some tonight for dinner. Everyone else can eat the food here and my husband is going to be tired as he has the toddler chasing job this time.... but maybe. We planned this trip a while ago as a birthday present and I am trying to keep it fun for the kids.

I don't have an appetite so I don't mind too much, I just feel better when I have enough protein.
 
2 cups down, 11 to go tonight. The last quarter of my jug is for morning. It's like lemon flavored seawater. Gross, but at least not quite as bad as Dave Barry's description (mixture of goat spit and urinal cleanser with a hint of lemon).

I found that 1 teaspoon of flavored jelly helps the liquid go down!
 
I think I forgot to update here after my most recent visit to my GP.

So...more referrals! She is sending me BACK to GI, because, really, there is something going on. She sent a note because she annoyed that they haven't, in her words, done the "fancy" stool tests (to determine secretory vs other types of D, etc). She also sent a referral off to Immunology/Allergy specialists. She sort of thinks they'll turn me away, but since it looks like I "probably" have EoE, and do have Sjogren's, she's hoping they'll at least look at me and see if there is something someone hasn't thought of yet (casein maybe? I dunno!). So that's where I'm at right now. And trying higher than labeled doses of immodium. Yuck, but getting some relief from that, at least slowing things down. So that's ok, at least.

Wishing everyone comfort!!
 
I think I forgot to update here after my most recent visit to my GP.

So...more referrals! She is sending me BACK to GI, because, really, there is something going on. She sent a note because she annoyed that they haven't, in her words, done the "fancy" stool tests (to determine secretory vs other types of D, etc). She also sent a referral off to Immunology/Allergy specialists. She sort of thinks they'll turn me away, but since it looks like I "probably" have EoE, and do have Sjogren's, she's hoping they'll at least look at me and see if there is something someone hasn't thought of yet (casein maybe? I dunno!). So that's where I'm at right now. And trying higher than labeled doses of immodium. Yuck, but getting some relief from that, at least slowing things down. So that's ok, at least.

Wishing everyone comfort!!
Wishing you the best.
 
Sorry I've been so absent, I've been fairly confused recently and not wanting to come online.
I've slowly been accepting the IBS diagnosis as my bowels haven't been too bad, still a lot of mucus, but fairly formed BM's and some days no BM's at all, just the odd few days of D. I'm still having some generalised abdominal pain usually but not like it was. It's been my upper GI that has been giving me the trouble. However over the last few weeks I've been having night sweats and LRQ pain in the same old spot again with more gurgling and grumbling than usual. No D as yet thankfully but I'm worried it's just a matter of time. So now I'm back to quietly wondering if it is IBS or if it could still be mild IBD.

On Monday I have my gastric emptying study which I'm a bit nervous about to be honest. My nausea etc has been high this week so I have a feeling it will be rough. Also I had a call from my gastro consultant today and I'm on the admission list so I will get a call when there is a bed available to go in for the NG tube feeding. She said I should be there anywhere between a few days and two weeks while we see if it's working for me and hopefully while I'm there they will get my GES result!

Hope everyone is as well as possible!
 
Sorry I've been so absent, I've been fairly confused recently and not wanting to come online.
I've slowly been accepting the IBS diagnosis as my bowels haven't been too bad, still a lot of mucus, but fairly formed BM's and some days no BM's at all, just the odd few days of D. I'm still having some generalised abdominal pain usually but not like it was. It's been my upper GI that has been giving me the trouble. However over the last few weeks I've been having night sweats and LRQ pain in the same old spot again with more gurgling and grumbling than usual. No D as yet thankfully but I'm worried it's just a matter of time. So now I'm back to quietly wondering if it is IBS or if it could still be mild IBD.

On Monday I have my gastric emptying study which I'm a bit nervous about to be honest. My nausea etc has been high this week so I have a feeling it will be rough. Also I had a call from my gastro consultant today and I'm on the admission list so I will get a call when there is a bed available to go in for the NG tube feeding. She said I should be there anywhere between a few days and two weeks while we see if it's working for me and hopefully while I'm there they will get my GES result!

Hope everyone is as well as possible!
Keep pushing until you get answers. Support for you.
 
Hi sarahfh,

I agree with Ron. Keep pushing for answers. Mucous is a sign of inflammation. You may want to mention it to the doc's. I hope you get some rest and some much needed help for whatever it is that is hurting you. Feel free to vent or pm me. I'm a chatty guy LOL!


All the best to you my friend,

cmack
 
I've been depressed and staying away from this thread because I don't want to bug you guys with my relatively minor complaints (I still can't get off of pred and I don't know if LDN is helping enough, blah blah blah). So now I have some catching up to do!

Yes, it was me who had turned my bathroom into a spa-like environment for doing prep a couple of years ago. I had scented candles and fancy bubble bath and face mud masque, an ipod on a dock in the bathroom playing a soothing & calming playlist, etc. I told myself that celebrities often do "cleanses" so I was just doing a cleanse and having a spa day, that's all. And that did make it easier, I think. My most recent prep was done in the hospital which was not exactly a relaxing spa-like time.

As for the gatorade & miralax prep - I found it easy to get down, but it made me too dehydrated. I've done that prep twice and had to go in for IV fluids both times. Maybe that's just me, but personally I would not do that prep again. Prepopik (also known as picolax/pico salax) was probably the easiest prep I've done. It didn't taste bad - it did make me pretty nauseous and dizzy, but zofran took care of the nausea. GoLytely is the other prep I've done and honestly I didn't hate it even though it tasted like nasty seawater. I did that prep in the hospital. I was hospitalized because I couldn't digest anything and was having 20+ bowel movements a day and severe cramping. GoLytely actually gave me less cramping and less bowel movements than I'd been having. :p So I was fine with doing that one.

Wildmtn, be careful with the Imodium. That stuff is opioid-based and it's not a great idea to take more than the recommended amount. For the short-term it's probably fine, but be careful.

Sarah, that's great that you're finally going to get the tube feeding! Night sweats are not indicative of IBS, though. They can be a part of IBD flares - I get night sweats too when I'm flaring. And of course, as you know, weight loss isn't part of IBS but can happen with IBD. When I lost 17 lbs in a month back in July/August, all my doctors (GI, GP, and the doctors who treated me during my hospitalization) all agreed that you simply just don't lose 17 lbs in a month with IBS. Anyway, I know you know all this stuff already. Keep fighting for answers, and in the meantime, keep us posted on how the tube feeding goes and the gastric emptying test too. Good luck!

Akgirl, I've been having some similar thoughts lately. I'm just so tired of this and it never ends. LDN is helping me, but not enough for me to get off of pred, and I keep flaring up whenever I try to taper. I feel like I'm on autopilot much of the time, I have to be to get through work and most of life. I'm like a robot who goes into the bathroom and cries. That's basically what I am these days. And I just hate pred so much. I woke up this morning in a mood, feeling fat and worthless (pred has made me chubby and I'm a recovering anorexic so I'm getting those destructive thoughts again). So I put on makeup to try to make myself feel less ugly, but then I just felt clownish on top of feeling fat and ugly and worthless. Sorry for venting, I'm just having a really rotten day (week, month, life). Last week I had some weird pain in my breast, and I thought, great! Maybe it's cancer and I can just let myself go and all this can finally end. That's a horrible thing to think, but that's where my head's been at lately, so I know how you're feeling. You're not alone. Just keep trying to put one foot in front of the other, that's all I can do most days but that's okay.
 
Cat I'm so sorry you're struggling at the moment, sending lots of gentle hugs your way. I really hope things pick up a little soon for you!

I am thinking that while I'm in hospital I will bring it up with my consultant, there's no harm in mentioning it. To be honest I suspect my weight loss is more to do with the upper GI stuff as I barely eat anything and live off the supplement drinks. But the other stuff definitely doesn't feel like IBS so I will bring it up again I think. I just wish they could figure it out. For all of us!
 
That is a big load of bullcrap! It doesn't prove either. Crohn's often hides where these tests cant reach to see. Definitely get a second or even third oppinion. Keep trying until somebody gets it. :ybatty: Never quit!

I wish you the best,

cmack

Thank you Cmack
 
Sarah - I hope you get some answers soon. It's so disheartening when doctors brush you off. It's hard to have the energy to keep fighting against them when you already feel awful. I hope the feeding at the hospital helps.

Cat - thank you for the information about preps. I will definitely be more prepared the next time I need one. I am new here, but I think it's ok to post what you are struggling with even if things are not as difficult as they have been in the past. If you are having a tough time with it, then it is important. That is what this group is for, right?
 
Cat,
It is time to see the GI doc again. You need a maintenance drug that keeps you in remission and you need to get off the prednisone. You are such a good advocate for everyone here one the forum--and you must be a good advocate for yourself too. I know it is very difficult when you are feeling the way that you are right now to speak up for what you need--but you must do it. You know this. :smile:

Could you take someone with you to the GI's office? Someone who could help advocate for you. They don't have to be familiar with IBD--they just have to be able to make sure that you are heard and that your all questions get asked and answered. You need to get your GI to understand that your quality of life is poor now because of the psychological aspects of being unwell for so long. You can do it!

Good luck. I am cheering you on! :dusty:
 
Thanks, Happy. I'm at sort of a pause right now, on purpose. There are shakeups at work and might be some layoffs coming, and although I've been unofficially told that my job is "probably" safe, there's still that little bit of uncertainty. If layoffs come, they'll start next month. So I don't really want to do anything new medical-wise until then. If I lose my job, then I will lose my insurance too, so I'd then have to find a new job and that would probably come with a different insurance plan, meaning I'd have to start over fresh with a new doctor anyway. So if it comes to that, then I don't want to do anything now.

I am considering looking for a new GI once the dust settles on my job situation. I've been with the same GI for 7 years, and he mostly seems to believe that I've got IBD, but lately we've been butting heads over email. I basically told him just that, that I think I need something more/different to achieve remission. He had the gall to say, "remission from what?" Um, gee, the monster that's been trying to kill me from within for 7 years now? I know it doesn't have a name, but that's not my fault. But yeah, so things got a bit snippy over email and he suggested that maybe I should seek out a 2nd opinion from a different doctor. I have an appointment with my current GI on May 1st, so I have some time to think about things until then. The pros of staying with my current doc are that he knows my history and he's usually pretty good and willing to prescribe some IBD meds (Lialda and LDN are my maintenance meds and I'm still on pred too). And I know a new doc would want to start all over with tests and would probably take me off my meds, and I don't want that. I'm exhausted just thinking about that, plus of course it would be so expensive and I'm still trying to dig myself out of the medical debt that I racked up last year (everything that my insurance didn't pay). So I don't know. I'm stuck but I don't know that I want to get that un-stuck, you know? I'd just be stuck in a different way then, I think. I'd rather stick with my GI than amass another mountain of medical debt. It's such a crappy system in this country, you have to make choices like this. Do I want a chance at diagnosis or a chance at being able to afford to retire someday? How much debt is too much? Where do I draw the line? I don't know.

I don't know how my aunt did it. I have an aunt who was diagnosed fairly recently with Crohn's. She had symptoms for 30+ years and went through many tests and spent thousands upon thousands of dollars on test, meds, doctors, etc. Every test result for her was always "normal" too, she told me what finally got her diagnosis was that she eventually developed scar tissue in her colon and it was seen on a scope. But that took 30 years. I've been sick for 7 and I'm falling apart. If you told me that I had to wait another 23 years for a diagnosis, I really don't know what I'd do.

Aaaaand now I'm crying at my desk again. :p Good thing it's a slow day and nobody is in the office to see me crying.
 
I'm really sorry to hear what's going on, Cat. I understand your GI is in a hard place - if there's no inflammation on biopsies or MRE, I understand that he can't prescribe stronger medications. Insurance wouldn't approve biologics.

But that leaves you in a very tough place :(, especially since you DO respond to steroids and Lialda. That suggests something inflammatory.

I think a second opinion is probably a good idea. You may want to consider traveling to a really big IBD center.

There's a test called a double balloon enteroscopy where they can get a scope through your small bowel. It's slightly riskier than a colonoscopy, but they'd really be able to "see" your whole small bowel. Alternatively, a pillcam would also "show" the inside of your small bowel, but that can miss spots, depending on how it's pointed.

All of this is very expensive, I'm sure. I'm sorry you have to make these choices. But I do think a diagnosis is worth it because it will give you access to medications that might actually put you in remission.

It also might be worth considering other specialists - I don't know what else it could be, but there are many obscure autoimmune or inflammatory diseases that respond to steroids. A rheumatologist is probably a good place to start.

Also, you could just ask your GI straight out - "What do you think is going on? Why can't I get off Prednisone? What kind of doctor should I see, who may be able to help?" He may actually have some constructive ideas - who to see, for example.

Really sorry you have been struggling for so long Cat.

Just as an aside, my daughter has a very hard time stopping Prednisone too. We have learned to expect several "bad" days every time she tapers, even if it's by 1 mg. She just pushes through because otherwise she'd be on Pred forever!!

The other thing I want to suggest - have you had a Dexa scan recently? You have been on Prednisone a long time.

sarahfh, very glad they are finally starting tube feeding!!! I hope the gastric emptying test goes well. My kiddo took Zofran before the test. She was sure she would throw up, but she didn't. It's not a whole lot of food (for a normal person) but for her it was a lot. She had eggs and a piece of toast and a glass of water, I think. It has to be in under 10 minutes (or maybe 15 - I can't remember). She was nauseous but otherwise ok. The test is long and boring - wear comfy clothes and take a book or ipad. She was at a children's hospital so they had movies for her.

Good luck and let me know if you have any tube questions! We have too much experience with tubes ;).
 
Thanks, Maya. I haven't had DBE but I have had a pill cam. That was back in 2010. It didn't find anything, of course. Story of my life. I'm sort of wondering if I should ask for an exploratory laprascopy. Maybe there's something going on on the outside of my bowels which hasn't been picked up in tests yet? Other than that, I've had just about every test - multiple colonoscopies (3 I think?), flexi sig, upper endoscopy (2), pill cam, MRE, abdominal CT, ultrasound of my liver and stomach and gall bladder, zillions of blood and stool tests. Cutting me open and having a peek inside seems like a big step, but maybe a necessary step, since I know that Crohn's can affect all layers of the bowel so maybe it's something that would be more obvious from the outside than from the inside/scope.

Can DBE take biopsies? My GI is very big on biopsies. Maybe I can talk to him about DBE and laprascopy at my appointment in May.

I did see a rheumatologist a few years ago but he was terrible. Whenever I'd ask him a question, even fairly basic ones, he'd say "I don't know" and then try to refer me back to my primary care doc. I should probably see a different rheumy at some point. I'm just sort of doctor fatigued right now, you know? It's hard to want to go and see even more doctors even though that is what I probably should do. If my guts would just give me a break (like, if I could get off of the pred without having symptoms nearly every time I try to taper), if I could just catch my breath and get my footing, then I think I'd be ready for the next round of doctors and tests. But I'm not ready for that yet.

I'm sorry to hear your daughter is having a similar time tapering off of pred. I can't seem to push through the bad days when I taper, the bad days just get worse and not better. It's not like I have a set number of bad days and then it gets okay again - I wish it were like that for me. I was trying to taper by 1 mg but I've abandoned that idea. I'm currently trying to taper by 0.5 mg, just did that today in fact. I went from 8 mg to 7.5 - my GI wrote me a script for 10 mg, 1 mg, and also 2.5 mg tablets, so I combine those to get to 7.5. I broke a 10 mg in half and took that with a 2.5 mg tablet to get 7.5 today. So far so good, I've been feeling crappy today only because I ate a small amount of nuts yesterday and my body didn't like that. And I'm feeling better this afternoon than I was this morning, so that's good. Maybe tapering by 0.5 mg is what I need to get off of this evil med (it's a great med too, but you know what I mean - it got me out of the worst of my flare and I can do things like eat and work again, but I also hate it and want to be off of it).

Oh, and I have not had a Dexa scan. There is a family history of osteoporosis, and I am a thin caucasian female which I believe already puts me in the danger zone, so that is something I should definitely ask my primary care doc about. I was on Entocort from late July - late August, on IV steroids during my 5 days in the hospital in late Aug, and then on a long slow taper down from 40 mg pred ever since. I'm actually overdue for a dental cleaning as well, I haven't scheduled it because I'm sort of afraid that they're going to say that my teeth are starting to deteriorate from pred. It's all just sort of terrifying and overwhelming right now.

Edited to add/clarify: My mother has early onset osteoporosis and she's only in her early 60s. BUT, she runs a ton of marathons and her doctor suggested that she should cut down on the running (for like a month she cut down from full to half marathons, but then went right back to full marathons again). So I think that's more of her being crazy and running way too much and that's doing some damage to her bone health. I know that moderate exercise of course can help bone health but when you overdo it, it's not good. So technically there is early onset osteoporosis in my family, but with a big caveat, and I don't know if that technically ups my risk factor or not.
 
30 years to get a diagnosis? That's awful. I hope it's nothing like that for you. 7 is more than enough. Do you think your GI will think it is more likely that you have Crohn's now that your aunt has a diagnosis?
 
Dahlia, no - sorry, I should have specified that she's my aunt by marriage, not by blood. I do have one blood relative that I know of who had IBD - my great-grandfather had UC, but he died in the early 1950s (he also had lung cancer and TB, and apparently the cancer is what killed him). My grandma is his last living child, but she's got terrible dementia and cannot tell me many details about her father, so I don't know much of anything about his UC or how he was diagnosed or anything like that.

I do like using my aunt's example when I'm talking to my GI, though, and he's never specifically asked whether she's a blood relative or not, so I sort of lie to him by omission and let him believe that there's more IBD in my family than there is. If it helps me get treatment or a diagnosis, then I'm willing to be slightly sneaky in that regard. And since I do have my great-grandfather with UC, it isn't a lie that there is IBD in my family. ;)
 
My kiddo is 20 and she has been on steroids so much that she has osteopenia. Interestingly, in the last two years since she has been on tube feeds and has gotten to a normal weight (from being severely underweight) her bone density has gotten a little bit better! But your bone density only increases till your mid-20s I believe.

My daughter tends to have 2 bad days when she tapers by 1 mg. BUT that is only when her disease is under good enough control - otherwise, like you, she just gets sicker and sicker.

I think you probably need a better maintenance med before you can taper. Unfortunately, it's hard to know when you'll be able to get on one :(.

Sometimes alternating doses also helps people - so 7.5 one day, 8 the next day. Then next week, 7.5 mg one day, 7.0 mg the next day.

It will take forever, but if it works, it's worth it.

I'm not sure about biopsies with a double balloon enteroscopy, but I would think so. My daughter had an enteroscopy - not a double balloon one, so it didn't go through her whole small bowel, but it did go further than a normal endoscopy. They were able to take biopsies with that scope, so I would think they would be able to with a double balloon enteroscopy.

I definitely understand about being sick of doctors and tests. I wish they could just fix you!! It shouldn't be so hard.

Have they ever considered endometriosis? I honestly don't know much about it, but it might be worth exploring.

Good luck!
 
Cat,

You deserve much better than,... "He had the gall to say, "remission from what?" Um, gee, the monster that's been trying to kill me from within for 7 years now?"... I have had problems like this before. One time I drove over 6 hours to get to my surgeon because of an abscess. I arrived in ER at 2AM and the fill in surgeon had the nerve to say to me, "It's 3 O'clock in the morning what do you want me to do about it!?" I told him, "just get out of my room." Then he tried to shake my hand and I just shook my head and said, "I've heard enough out of you, goodbye." He left. The nurse came in and asked what happened and I told her, and that, "he better not come back for any more, I don't want that man to even touch me." they gave me a happy pill! LOL They can be such jerks sometimes. Man I could have really let him have it.


I feel for you buddy, You are not alone,

cmack
 
Back
Top