Diagnosed with Crohn's after a 3rd GI dr in one yr
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Angrybird
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Hello and welcome to the forum 
I am sorry to hear about the diagnosis but you have come to the right place for lots of helpful info and support. Out of interest what symptoms had you been getting? Have you been put on any meds and if so which ones? Are things now settling for you?
AB
xx
I am sorry to hear about the diagnosis but you have come to the right place for lots of helpful info and support. Out of interest what symptoms had you been getting? Have you been put on any meds and if so which ones? Are things now settling for you?
AB
xx
Hi and welcome to the forum!
I'm also curious as to what your symptoms are and what your treatment is. You're definitely not alone in having to sift through multiple doctors. Glad you finally found one who was able to diagnose you.
I'm also curious as to what your symptoms are and what your treatment is. You're definitely not alone in having to sift through multiple doctors. Glad you finally found one who was able to diagnose you.
I started out with off & on nausea, cough, lower right, all joints hurt, backache the end of 09. Thought it might be allergies. Within a yr the nausea was several times a day, extreme fatigue, dizzy, blurred vision and same cough and fingers will sometimes lose a first layer of skin in spots a couple of times a yr, a few white lumps on tongue. Found a new PCP and ordered chest x-ray and blood work. Was sent to a pulmonologist for a lung nodule. Had a CT, PET scan in 2011 and was told nodule wasn't a big concern. Sent to a GI and had an upper & lower GI and put on medication for acid reflux. I complained about the feeling of something stuck in my throat and was told it was from acid build up. Still getting worse with fatigue and abdominal pains, had Uterine tumors removed thinking the low iron and fatigue caused by them and because PET can showed problems in my Uterus. I got worse and then had a fatty tumor on my ribs removed and my gall bladder for low function by a second GI.
After in the ER 2 months later for extreme abdominal pains and fatigue was sent back to OB and had my uterus and cervix removed for multiple cyst and more tumors. Now on a 3rd GI and have had another upper and lower GI (all of this done between 5/11-5/12) and being treating for Crohn's. Vitamin D level is 9.4 and Iron is very low. It's been 5 months and I'm on a second medication for it along with sometimes mouth ulcers, and am back to seeing my PCP for same sore throat in neck (always the left side a couple of times a wk) body aches, lower back worse, something stuck in throat worse with neck & node swelling, finger nails curl if they start to grow, very pale skin. Back in July I had a neck ultrasound because when she was checking the nodes, my neck was swollen, which was clear. Thyroid blood work clear, lupus and inflammation test negative. Crohn’s and Lupus run in my family. Now throat worse with palpable neck, armpit, (armpits throb) chest and breast nodes, plus salivary glands swollen with swollen cheek inside mouth. Had an ultrasound and mamo a wk ago and all clear. Had an MRI of face 2 weeks ago and it was normal.
I keep getting worse by the day. Nodes still swollen in neck and chest. Neck all the way down on both sides and along collar bone hurt to touch. Back of neck just below hair line lumpy at times. Back killing me, extreme fatigue, abdomen sometimes feels as though it swells with a twisting feeling. I had an X-Ray of my back 1 ½ weeks ago and also normal. All joints hurt (fingers, legs, ankles), neck keeps swelling, now headaches in my scalp that last 10-20 seconds at a time some of which are worse than others and once in a while jaws hurt near ear lobes, my vision getting worse, sometimes blurry for no reason. Today I am out of work because my left ankle feels sprained for no reason and the top of the right foot throbs and feels like bones are broke. This happens at least once a yr. What's wrong with me? from May to July on Lialda twice a day along wit Omeprazole. 50,000 units of vitamin D twice a week, multi Vitamin and and iron supplement. In sept changed from Lialda to Pentasa and added Budesonide steriod along with all the others still. And since May I melt Ondansetron ODT pills on my tongue for the nausea. That's daily and several times a day.
I'm 52 and didn't realize my GI problems were because of Crohn's back in my late 20's and 30's because Now is when it has hit me hard. Most people are diagnosed around 30 but those who aren't it hits them hard around 50. The palpitaions, chest pain, nausea and body aches are so bad. Now I have accidents from the bowel issue and afraid to eat unless I'm at home. My regular PCP has given up on me. She doesn't understand all the multiple body aches and pains. I have decided not to see her anymore for it.
After in the ER 2 months later for extreme abdominal pains and fatigue was sent back to OB and had my uterus and cervix removed for multiple cyst and more tumors. Now on a 3rd GI and have had another upper and lower GI (all of this done between 5/11-5/12) and being treating for Crohn's. Vitamin D level is 9.4 and Iron is very low. It's been 5 months and I'm on a second medication for it along with sometimes mouth ulcers, and am back to seeing my PCP for same sore throat in neck (always the left side a couple of times a wk) body aches, lower back worse, something stuck in throat worse with neck & node swelling, finger nails curl if they start to grow, very pale skin. Back in July I had a neck ultrasound because when she was checking the nodes, my neck was swollen, which was clear. Thyroid blood work clear, lupus and inflammation test negative. Crohn’s and Lupus run in my family. Now throat worse with palpable neck, armpit, (armpits throb) chest and breast nodes, plus salivary glands swollen with swollen cheek inside mouth. Had an ultrasound and mamo a wk ago and all clear. Had an MRI of face 2 weeks ago and it was normal.
I keep getting worse by the day. Nodes still swollen in neck and chest. Neck all the way down on both sides and along collar bone hurt to touch. Back of neck just below hair line lumpy at times. Back killing me, extreme fatigue, abdomen sometimes feels as though it swells with a twisting feeling. I had an X-Ray of my back 1 ½ weeks ago and also normal. All joints hurt (fingers, legs, ankles), neck keeps swelling, now headaches in my scalp that last 10-20 seconds at a time some of which are worse than others and once in a while jaws hurt near ear lobes, my vision getting worse, sometimes blurry for no reason. Today I am out of work because my left ankle feels sprained for no reason and the top of the right foot throbs and feels like bones are broke. This happens at least once a yr. What's wrong with me? from May to July on Lialda twice a day along wit Omeprazole. 50,000 units of vitamin D twice a week, multi Vitamin and and iron supplement. In sept changed from Lialda to Pentasa and added Budesonide steriod along with all the others still. And since May I melt Ondansetron ODT pills on my tongue for the nausea. That's daily and several times a day.
I'm 52 and didn't realize my GI problems were because of Crohn's back in my late 20's and 30's because Now is when it has hit me hard. Most people are diagnosed around 30 but those who aren't it hits them hard around 50. The palpitaions, chest pain, nausea and body aches are so bad. Now I have accidents from the bowel issue and afraid to eat unless I'm at home.
My regular PCP has given up on me. She doesn't understand all the multiple body aches and pains. I have decided not to see her anymore for it.Welcome to the forum, sorry to hear about your troubles.
Have you considered a food allergy or sensitivity? With the lymph node swelling, so many areas of your body affected and negative testing, it might be worth a try. It might be worth trying a liquid formula Enteral Nutrition, followed by an elimination diet, to see if the joint issues are due to a food reaction. We have a sub-forum Enteral Nutrition in the treatment section.
Try to see both a rheumatologist and an allergist first to rule out anything else and get allergy testing. Even if the testing is negative, you could still have an intolerance.
Have you been tested for Celiac disease?
Many people with IBD cannot tolerate wheat/gluten and dairy/casein. Food allergies and intolerances can sometimes show up with strange symptoms like swollen lymph nodes, fatigue, joint pains, blurred vision, fuzzy thinking and even dizziness and balance problems.
May you soon be feeling better.
Have you considered a food allergy or sensitivity? With the lymph node swelling, so many areas of your body affected and negative testing, it might be worth a try. It might be worth trying a liquid formula Enteral Nutrition, followed by an elimination diet, to see if the joint issues are due to a food reaction. We have a sub-forum Enteral Nutrition in the treatment section.
Try to see both a rheumatologist and an allergist first to rule out anything else and get allergy testing. Even if the testing is negative, you could still have an intolerance.
Have you been tested for Celiac disease?
Many people with IBD cannot tolerate wheat/gluten and dairy/casein. Food allergies and intolerances can sometimes show up with strange symptoms like swollen lymph nodes, fatigue, joint pains, blurred vision, fuzzy thinking and even dizziness and balance problems.
May you soon be feeling better.
I'm considering a special diet now. Not that I eat much. I eat once a day because of this. I refuse to eat during a work day and just eat at night time. I also get horrible leg pain at night with horrible foot and leg cramps pretty much every night now. I will get the cramps (muscle cramps) all over though, including my back, ribs and hands. Not just feet and legs. My thighs have a combination of pain, throbbing feeling and itch. If I rub them I have horrible bruising. I have a lot of unexplained leg bruises. My body itches all over daily. Over the past 5-6 yrs all of my eye brows have fallen out and my lashes are getting very thin now as well. And the night sweats are crazy! Plus I'm up several times a night. I am having a sore throat at least twice a week now. still have no idea why my salivary glands on left side of face are swollen. I have a dentist appt on the 8th and am hoping he will know why. And what's up with a gallon of milk being too heavy for me to carry now. I actually feel as though something is slowly killing me. I actually have been looking for a rheumatologist. I called several offices yesterday. I even called Mayo and asked to schedule with one and was told you Can schedule with a specialist only if you are already diagnosed with something first. Not to be diagnosed. I settled for a complete physical on 12/3/12 and if they find something, then I can schedule with that doctor. I have to check with my insurance to make sure of the coverage. One aunt has Crohn's and lupus and the other has UC and Lupus. Now a cousin has Crohn's and Lupus.
Nice post Happy.
I agree with seeing a Rheumatologist. Even if you don't have RA they are the best to see for joint pain (mine even started treating my Crohn's since they felt my GI wasn't doing enough in that department. I don't have RA but I do have osteoarthritis caused by Crohn's so says all my doctors).
Yes you should have an allergy test (that was one of the first things I had done before my diagnosis).
Have you had all of your vitamin levels tested (besides just the few you listed above like B12, magnesium, potassium, folic acid, vit A, B, C, E, K, Zinc etc)? Have you had the Iron and D retested to see if its enough? Also are you taking D3 (you just said D)? I'm used to the measurements being in IU, I'm assuming you're not taking 50,000IU though as that doesn't make sense, splitting up the dose to something daily might be best.
I agree with seeing a Rheumatologist. Even if you don't have RA they are the best to see for joint pain (mine even started treating my Crohn's since they felt my GI wasn't doing enough in that department. I don't have RA but I do have osteoarthritis caused by Crohn's so says all my doctors).
Yes you should have an allergy test (that was one of the first things I had done before my diagnosis).
Have you had all of your vitamin levels tested (besides just the few you listed above like B12, magnesium, potassium, folic acid, vit A, B, C, E, K, Zinc etc)? Have you had the Iron and D retested to see if its enough? Also are you taking D3 (you just said D)? I'm used to the measurements being in IU, I'm assuming you're not taking 50,000IU though as that doesn't make sense, splitting up the dose to something daily might be best.
