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Crohn's Disease Forum » Support Forum » In a lot of pain


02-24-2013, 10:07 AM   #1
sickofbeingsick76
 
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In a lot of pain

Hi everyone. I've been on remicade for about a year and a half every 8 weeks. My dr just increased the dosage to 500 mg due to the fact that since nov when reaching the 6 week mark my flare would be unbearable causing me to go to the hospital two times. I've been complaining of right sided pain each time I go to the ER. I've had an appendectomy, hemi-colectomy and my gallbladder taken out. I've had ct-scans, ultrasounds and nothing shows up on the right side only inflammation on the left side. My dr ordered an MR enterography with barium and contrast which I had performed on the 18th of feb. still waiting for the results. I don't know what it could be. I'm in excruciating pain. Laying down on my back is a project, my stomach starts gurgling and causes pain. im also burping really loud and long. I'm on prednisone, cipro and Vicodin ES for pain which isn't helping. I spent most of my morning bent over in pain and crying my eyes out. I just want to feel normal. Could this be an abscess or scar tissue? Something is not right. I feel it. Please someone give me some advice. I feel so alone right now. Thank you.
02-24-2013, 10:20 AM   #2
Ihurt
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First off I am so sorry you are in so much pain. I mean you know when something is not right. It is good that you did the test, hopefully it will give you some answers. Maybe your doctor could switch your pain med. I know years ago I was given vicodin for severe migraines I was getting. I noticed it only worked the first two times I took it. My doctor said that was common with this pain med. She said the body can bulid a tolerance to it very quickly. Your doc should give me something else if that is not helping your pain. Also, how long have you been on the cipro? Cipro is an antibitoic and that alone can irritate the intestines. Not sure if your pain started before or after the cipro though.

In any event, I would call your gastro and tell him you are in pain and need something else. Tell him the vicodin in not helping. Have you tried a heating pad? I find when my pain is severe, I use the heating pad. I am glued to it most all the time now.

You are not alone, and you will get to the bottome of this. Hope your test gives you some answers..






Hi everyone. I've been on remicade for about a year and a half every 8 weeks. My dr just increased the dosage to 500 mg due to the fact that since nov when reaching the 6 week mark my flare would be unbearable causing me to go to the hospital two times. I've been complaining of right sided pain each time I go to the ER. I've had an appendectomy, hemi-colectomy and my gallbladder taken out. I've had ct-scans, ultrasounds and nothing shows up on the right side only inflammation on the left side. My dr ordered an MR enterography with barium and contrast which I had performed on the 18th of feb. still waiting for the results. I don't know what it could be. I'm in excruciating pain. Laying down on my back is a project, my stomach starts gurgling and causes pain. im also burping really loud and long. I'm on prednisone, cipro and Vicodin ES for pain which isn't helping. I spent most of my morning bent over in pain and crying my eyes out. I just want to feel normal. Could this be an abscess or scar tissue? Something is not right. I feel it. Please someone give me some advice. I feel so alone right now. Thank you.
02-24-2013, 10:43 AM   #3
sickofbeingsick76
 
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Thank you for responding Ihurt. I just started the cipro on Friday. The pain was already there before that. My heating pad has been my best friend for the past couple of days. I see my GI tomorrow hopefully he'll have the results by then. I can't continue with this. He had given me dilaudid but that just made me sick. I was on the low dose of Vicodin and now I'm on the Vicodin ES.
02-24-2013, 10:57 AM   #4
Ihurt
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Gosh, I am so sorry that you are in so much pain. I get what your saying though, I mean I am very sensitive to side effects too. I was given Norcco once and just one pill made me sick as a dog. Have you ever tried percocet? I hear this one can be good for severe pain and does not cause that nausea like some of the other pain meds do. I really hope you get some answers. I am actually not diganosed yet. I am in miserable pain everyday and I do not even know what is wrong. I went through some tests, but still have to go through more... Hang in there, you will get an answer and some help! Sending )))BIG((( hugs your way!







Thank you for responding Ihurt. I just started the cipro on Friday. The pain was already there before that. My heating pad has been my best friend for the past couple of days. I see my GI tomorrow hopefully he'll have the results by then. I can't continue with this. He had given me dilaudid but that just made me sick. I was on the low dose of Vicodin and now I'm on the Vicodin ES.
02-24-2013, 01:06 PM   #5
sickofbeingsick76
 
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I'm sorry to hear that you are suffering every day. I hope and pray that you don't have this dreadful disease and that you get answers really soon so you can be pain free. The percocets make me sick too. I never heard of Norcco. Gotta look that up. I hope you feel better, hang in there as well. Thank you again for responding. I needed to hear from someone.
02-24-2013, 04:03 PM   #6
petparent
 
Join Date: Feb 2013
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Hi!
I am sad that you feel so bad. I truly understand. I feel sick 24/7. The heating pad is also my best friend. I even take one to work with me. It is difficult to work when you feel so sick but I have no choice. Have you tried using another doctor? Someone gave me the name of a doctor who is in Manhattan and he told me that his son has Crohn's and was very bad at one time until he found this doctor. He said that his son is in remission and has ocassional flair-ups. If I don't get any answers soon, then I will try him. He takes my medical insurance. Let me know if you would like the name of this doctor. If I can help in any way, please feel free to let me know. I will be praying for you.
Petparent
02-24-2013, 06:04 PM   #7
xmdmom
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Is your pain related in anyway to eating? Doe it get better after the remicade infusion and then worse before the next one? Did you have liver functions checked?

I'm so sorry you are dealing with so much pain. I think it's definitely worse when you don't know what's causing it. Hope you can get some answers and relief soon!
02-25-2013, 07:41 AM   #8
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@Petparent, I'm attempting to go back to work today after a couple of days I stayed home, with my heating pad in tow. I still feel horrible but I'm seeing my gastro after work. Hopefully he'll give me the results of the MRE. I would love the name of the Dr. in Ny. I saw Dr. Ellen Scherl there and it was $450 a visit and my ins didn't cover her.

@xmdmom, eating really doesn't bother me. But being that I'm in that much pain, I stay away from food. Just been keeping myself hydrated with liquids and I eat crackers with the steroids. I do feel better after the remicade but when I'm two weeks due for it all hell breaks loose. My liver functions have been checked and are normal. Thank you for your support.
02-25-2013, 11:36 AM   #9
petparent
 
Join Date: Feb 2013
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Hi!
I'm glad that you are going back to work. Sometimes I feel better when I work. I was out of work for a month when I was in the hospital. The Doctor is Peter Lagnani and he is with Mount Sinai Hospital. His address is 1751 York Avenue. I do not have his telephone number with me as I am at work. I know that he takes my medical whiich is Aetna. I hope that you see him because I read good reviews about him. He did come highly recommended from my aunt's cousin who is a medical doctor. Please call him because I know he has helped many people who did not get any satisfaction from other GI Doctors. If my GI Doctor does not help me then I will call Dr. Lagnani.
I know that there is help out there. Please let me know what happens.
Petparent
02-26-2013, 12:28 PM   #10
sickofbeingsick76
 
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@Petparent, I got my results of the MRE and it was discovered that I have my crohns has become so advanced causing numerous ulcerations and fistulas. My GI told me that he couldn't do anything for me anymore and that this was a job for a top dog in NYC. He gave me the name of Dr. James Marion who is in the IBD center out of Mount Sinai. Apparently the remicade has stopped working for me. He told me that my problem was so severe with the fistulas that if I didn't get it taken care of that I could be heading toward a full hysterectomy at my age which is 36. I did want another kid so im
devastated. So I'm seeing the dr in NYC on march 6. I will definitely keep your dr in mind if I want a second opinion. Thank you again for all your help.
02-27-2013, 07:01 AM   #11
petparent
 
Join Date: Feb 2013
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Hi!
I am so sorry to hear this. I have Dr. Legnani's telphone number:
212-369-2490 I know that the Doc's at Mount Sinai are excellent. Were you given any different medication? My cousin's friend has Crohn's and takes Humara ( I am not sure of the correct spelling) It helps her but is very very expensive. Please let me know how everything goes. I'm praying for you and for all of us. Does anyone in your family have Crohn's? I don't know of anybody in my family that has or had it. My family does have stomach trouble but not Crohn's.
02-27-2013, 08:23 AM   #12
sickofbeingsick76
 
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Hi Petparent. Thank you for giving me the number. I haven't seen the new GI yet but my current dr. added flagyl to the cipro I'm already taking. He stopped the prednisone. I tried humira but was taken off because it was causing me neurological problems. The only person who has crohns in my family is my 16 year old daughter. She just got diagnosed last November. Thank God her crohns is not severe and well maintained. But no one else in my family that I know of has it. My uncle in Colombia just passed away from colon cancer but I don't know if he was suffering with stomach issues and this might sound stupid but I don't know if this disease is known by crohns over there. My cousin over there too had issues but they said it was some kind of virus. How are you feeling by the way?
02-27-2013, 09:13 AM   #13
petparent
 
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Hi sickofbeingsick76,
I hope that one of the Doctors in Mt. Sinai can help you. I understand that their Gastro Department is excellent. i feel bad most of the time.
I have stomach cramping and the worst is rectal burning and itching. Not much helps me. I will be taking a colonoscopy at the beginning of April. If the pain gets worst, I will go to emergency and be admitted. I have had most every test there is except the colonoscopy because I was so inflammed that they were afraid of perforating my colon. If I have stress, then everything is much worse. Who can stay calm all day? I have a stressful job and am usually busy most of the time. Did you every take Bentyl? My GI just gave it to me for the pain and cramping. Hope it works. Please let me know how you are doing.
02-27-2013, 08:49 PM   #14
sickofbeingsick76
 
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Petparent,
I really hope that someone helps me over there too. I get the stomach cramping too. But lately it's the intestinal spasms that take my breath away and last for what feels like an eternity. What meds are you on? I had the same issue, they had to stop the colonoscopy for fear of perforating my intestine. I've tried the bentyl but it constipated me and when it was time to go, the pain was too much to bare. I hope it works for you. Stress is so bad for us crohnies. I work for a lawyer and it gets crazy sometimes. I think it's impossible to be stress free in this day and age.
02-27-2013, 10:46 PM   #15
petparent
 
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Hi In a lot of pain,
I am in a lot of pain right now. I can't stop going to the bathroom and the mucus is making me sick. I am wondering if some of this is from my gall bladder. My stomach is turning and I am starting the Bentyl. I also take Protinix for the Acid Reflux Disease. Protonix makes you go too much. If the pain gets worse, I will have to get to the hospital. I work in a high school and that too is stressful. The students can drive you crazy in addition to my co-workers and my principal and assistant principal. When I get home, that is the worst. The people who live above me are impossible. It's like living under a bowling alley. I need peace and I don't have it. I get up extremely early to go to work because there is a parking problem so we have to fight for a parking space. That is stressful. Did you ever go to a Crohn's Support Group? The closest one is in Manhattan which is far from where I live. I thought it would be helpful. I don't know what to eat anymore because everything bothers me. Do you have trouble with what to eat? I was never given any kind of diet or told what foods to eat or stay away from. Now I have to take my shower and fall asleep with my heating pad. I have a King size heating pad with four settings which automatically shuts off after two hours. I just ordered one for work. Do you have trouble sleeping? Now I have to run to the bathroom again for the about the 10th time today.
02-27-2013, 11:47 PM   #16
sickofbeingsick76
 
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Petparent, I am so sorry you are going through all that right now. Seems like we both are in the same boat. If you are in so much pain then you should go to the hospital. You shouldn't have to be suffering for that long. Seems like you can't get a break with the stress either which makes matters worse. I'm in bed too with my heating pad. I stopped eating red meat, hot dogs and deli meats. But it really doesn't matter anymore, I can have broth and I end up in pain. I don't sleep at night because of my back pain and joint pain. I developed osteopenia from the prednisone. I have days when I go 10x a day and it burns so bad. I'm terrified to go now because of the pain on my right side, it feels like my intestines are gonna burst with the sound they make. I don't have a gall bladder but I do get pains as if I have gallstones. My appendix is gone and so is a foot of my colon. All of the support groups are like 2 to 3 hrs from where I live. I'm actually going to see a therapist on Friday as I been finding myself extremely depressed. I don't go anywhere anymore for the fear of an attack. Listen, please don't hesitate to go to the hospital. There has to be something to help you with this pain and something that stops you from going so much. I hope you are staying hydrated. I will be praying for you. Please keep me updated. I hope you feel better soon.
03-07-2013, 06:49 AM   #17
petparent
 
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Hi In a lot of pain,
I hope that you are feeling better. I have some good days and some bad days. I was given an antibiotic for a tooth infection and that has eased some of the pain. I wanted to let you know that I went into youtube and I saw Dr. James Marion talk about Crohn's. I know that you said that you have an appointment with him later this month. I found what he had to say quite interesting. You might want to listen to it. He was speaking to a Fox Newscaster who is also suffering with Crohns and a woman who is I think the director of one of the Crohn's associations. I will keep praying for all of us to find an answer. Let me know how you are doing.
03-07-2013, 07:39 AM   #18
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Hi Petparent:
Unfortunately, I'm not feeling better. I haven't been to work in two days. I'm very greatful that my boss understands and doesn't just fire me. I'm seeing Dr. Marion t
03-07-2013, 07:43 AM   #19
sickofbeingsick76
 
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Petparent
Sorry, I wasn't finished. But I'm seeing Dr. Marion today at 12. I really hope he can help me. It's getting harder to deal with this pain. I'm living on the Vicodin every 5 hrs. I can't wait the 6hrs it requires. I'm glad the antibiotic you were given has eased some of your pain. Hopefully the longer you are on it, you will be pain free. I'm going to go on YouTube right now and check out the story. I will keep you posted about what he recommends when I see him.
03-07-2013, 09:31 AM   #20
lukefarrell
 
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@sickofbeingsick fistulas can cause obstructions which I am sure you know. these can be very painful! I would say it looks like you may need surgery to fix this!

good luck
__________________
Crohn's Disease - diagnosed 2001.
Small bowel resection 2003 & ileostomy for 6 months.
Strictureplasty laparotomy in 2012.

On Azathioprine 100mg per day since 2003 and in remission since, however my crohns returned Feb 13.

Currently on:
- Budesonide 9mg per day
- Humira
03-07-2013, 06:51 PM   #21
sickofbeingsick76
 
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@lukefarrell..I saw this specialist and got admitted to the hospital. I'm getting a colonoscopy tomorrow. So depending on what the results say that is how the dr. will proceed.
03-07-2013, 07:26 PM   #22
petparent
 
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hi in a lot of pain,
I had a feeling that you got admitted to the hospital. I am sure that they will help you. Mount Sinai has an excellent GI Department. I work in a Catholic High School and I will ask the Brothers to pray for you. I will go into the Chapel tomorrow morning and pray for you also. I do understand what you are going through because in addition to stomach problems, I have other medical issures as well. Please let me know how you are doing.
03-07-2013, 08:15 PM   #23
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Hi Petparent. I will truly appreciate all your prayers as they are really needed right now. They still haven't gotten me a room. I've been waiting since 4pm. I heard this is a great hospital but the ER is horrible. I need to be evaluated here first before they send me to a room. How are you feeling? I pray and hope well
03-07-2013, 09:05 PM   #24
petparent
 
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Hi In a lot of pain,
The ER at the hospital that I was in is worse. I was there from 3pm to 12:30am when they finally sent me to a room. You will get a room. My co-worker who is also my friend has a husband who has Crohn's. He was operated on at Mt. Sinai and he has never felt better. He put on 30 pounds. I remember how sick he was. He had a very good doctor operate on him. The hospitals in NY are really the better because they have the best doctors. As soon as I am finished taking the antibiotic, my stomach will be terrible again. At he end of the month I will be taking a colonoscopy. I have to tell you that I have a cat and she has acid reflux disease and inflammatory bowel disease. She is on pepcid and pednisone. She is doing fine because she has a great doctor. Animals get the same things that we get. Did you like Dr. Marion? I'm sure that he will help you. Sometimes it takes a long time to find the right doctor to help. Please keep me posted and let me know how you are doing.
03-07-2013, 09:40 PM   #25
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Hey Petparent,
I'm still waiting for a room. Just saw the surgery team. I'm having the colonoscopy done tomorrow. Depending on those results, I might need surgery or an ostomy which might or might not be reversible. They told me not to think of the ostomy yet but to leave it on the back burner. I really didn't want to hear that. I liked Dr. Marion a lot. He went into great detail and explained everything so that I could understand. He told me that I needed to be admitted ASAP cuz I could possibly die. That's how bad I am. I had no idea animals could have ibd and acid reflux. I'm glad she's doing good. I have a dog, he's constantly getting eye infections. What meds are you on that aren't giving you relief?
03-07-2013, 10:20 PM   #26
petparent
 
Join Date: Feb 2013
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Hi,
I hope that you don't have to have a colostomy but my friends husband did have one and he is the one that had Crohns and has gained 30 pounds. I remember how ill he was. Nothing helped him. Now he eats everything. Try to stay positive. The doctor does not know anything until they do the colonoscopy. My vet is also an eye specialist. He is a consultant to zoo's and other vets send their patients to him. I have had animals for a long time and I have always used his services. I took Donnatal but it never worked. I take Protinix for acid reflux but it makes me go to the bathroom many times during the day. I am allergic to prednisone and a lot of other drugs. Some doctors gave me tranqualizers because they think that it is in your head. When I have stress my stomach is worse. I even get belly button pain. It is really horrible to be sick. Some of my co-workers don't understand because they have never experienced stomach problems. Many times I don't say anything to anyone and I just work. I don't know how I do it. How are your co-workers? Are they understanding? Please let me know your results and I will also ask Campus Ministry to pray for you. What is your first name so that they can say prayers for you?
03-07-2013, 10:41 PM   #27
sickofbeingsick76
 
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Hi there:
I've tried the donnatal too. It didn't work for me either. Stress also triggers my pains and non stop diarrhea. My co-workers are very understanding. They are always willing to help and know that i need the bathroom available to me at all times. Thank his we have 4 bathrooms. My boss has been patient with me but he only cares about himself. He only asks me how I'm doing when he hears one of the other lawyers asking me first. He's on vacation this week and all he cared about was who was gonna answer the phones in the office. My name is Milly by the way. I will let you know the results. Thx again for your prayers
03-07-2013, 11:04 PM   #28
petparent
 
Join Date: Feb 2013
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Hi,
I'm glad that you have nice people that you work with. My computer is going crazy. It keeps freezing. We have a great technology dept at work and one of the tech's comes to my house to fix my computer. By the way, my name is Jane. Please remember that if you want to email me do not hesitate to do so. We must support each other as illness is the worst and stomach problems can drive you out of your mind. I will be happy to listen. Tomorrow is work and at least it is Friday. So please to think good thoughts let me know what's going on.
01-22-2014, 12:44 AM   #29
patcrawford1
 
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Have you tried percoset or anything stronger? That might do the trick. Good luck!
__________________
Patrick

-Diagnosed w/Crohn's in 1998, 2 surgeries.

MEDS:
Humara (about to switch to Tsabri)
Luvox (SSRI for depression)
Methadone for chronic Crohn's abdominal/joint pain
Iron supplement, Multivitamins, Fish Oil
Flagyl (For a current bout with C Diff and partial blockage
Have already tried: remicade, 6mp, Pentasa.


Prayers to all those out there that go through needless suffering!
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