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My Story Is More Like a Nightmare...

Hello Everyone!

I'm glad to a part of this forum. I have been browsing through some of the posts, and I see you all are very supportive. I have been looking for a place to come to talk about everything that has happened to me for a long time.

I'm newly "unofficially" diagnosed with Crohn's. I am hoping and praying to the good Lord above that this will finally be the answer to my prayers so that I am finally able to be treated.

This is my nightmare: (It's going to be long. I'm sorry. I have never typed this out. The only people who know are my family and close friends.)

I had mostly normal bowel habits my entire life up until 2008. I started having quite a bit of diarrhea, but chalked it up to drinking too much coffee, so I didn't take meds for it, or complain too much. Then, in June of 2008, I became very ill with vomiting, diarrhea, abdominal pain, and fever. I thought it was food poisoning. When it didn't clear up after three days, I went to see my doctor. At the time, my husband (I'll call him John) was with a Special Ops unit in the Army, and we had our own on-call doctor and nurse. I had their cell phone numbers. I went in to see him and he gave me tummy meds, told me to rest, and I went home. A week goes by, and I'm no better. I insist to him that something is wrong. He says that it must be a virus and to just rest. Over the next few days, I do start feeling better until one night after I put my kids to bed. I started having terrible stomach pain, vomiting, and more diarrhea. At the time, John was on a three month depolyment rotation in Afghanistan, so I called my neighbors, who I was close to, to come and help me. One was a medic. He took one look at me and called 911. I was rushed off to the hospital.

A lot of military wives get a bad wrap for being attention-seekers, drug-seekers, and hypochondriacs. I was about to bear the brunt of this for the next several years.

As soon as I was wheeled into the E.R. The charge nurse leaned over me screaming at the E.M.T. for starting an I.V. on me because she couldn't put me out in the waiting room. I knew that this visit wasn't going to be pleasant. After an ultrasound, and several hours, I was diagnosed with gall stones. I was given an I.V. push of dilaudid, tummy meds, percoset, and sent home with instructions to follow up with my doctor. I called him the next day and he put through a referral for me to see a surgeon at our base hospital. Within the week, I was back in the E.R. several times for attacks and horrendous pain. My doctor initiated a Red Cross message for my husband, and John was brought home early from Afghanistan. My surgery was scheduled for July 7th. It was mid-June. The day after John came home, I was back in the E.R. with debilitating symptoms. They admitted me to the surgical floor to await my gall bladder removal. This time as an emergency surgery. I waited in my hospital room for six days. Every few hours or so, someone from surgery would come up and tell me that I was scheduled for surgery in 4 hours, 6 hours, at 2:00 A.M., at 4:30 A.M., and 3:00 P.M. the next day....this went on and on until 11:00 P.M. on the sixth night. A surgeon came up and told me I was going home without the surgery. I was being discharged. I called John, and he came and got me in the middle of the night. I went home very sick, and very confused.

A few more days go by, and I am getting sicker and sicker by the day. I have not been able to keep any food down in days, and was getting very dehydrated. I couldn't keep my pain meds down. Back to the E.R. we went, where I was admitted again. This time, at the end of June. I ended up staying in the hospital until the orginal day of my scheduled surgery. July 7th. The doctors and nurses told me that I would feel wonderful after the surgery and I would be able to eat and drink anything I wanted. I was so excited, I could hardly stand it. I wanted a milkshake more than anything in the world, but that didn't happen.

I awoke from surgery expecting to feel better, but I didn't. I still could not keep food down. I let the doctors convince me that I was getting better anyway and went home the day after surgery. I spent the next few days in the bathtub, praying to God, and asking Him why He had forsaken me? I was beginning to think I was crazy. Was I really feeling this pain? Is it all in my head? I even asked my husband if he believed me, if he believed how sick I was. By the time Friday rolled around that week, I was in so much pain and so sick that I could barely move. John loaded me up in the car and took me back to the Emergency Room. They called me back right away, but left me in my exam room for a couple of hours without anyone coming to check on me. I was writhing around in pain and crying uncontrollably. John had had enough and went to find out what was going on. He went to the nurses' station and demanded to know why I hadn't been seen or why a doctor hadn't come in. He told them I was in an immense amount of pain and needed help right away. The nurse told him someone would be coming in to draw blood, but I was under no circumstances getting pain medicine because I was addicted and they were not going to give me my "fix". He was astounded and didn't know what to do. John spent the next few hours crying to our family on the phone. He had no idea how to help me. I was once again, after the blood draw, sent home confused, crying, and very, very ill. On Sunday evening, I got a call from the E.R. doctor about my blood work. He said something was very, very wrong and I needed to come in right away. I didn't get to back to the E.R. and, I don't remember anything else of that evening. I don't even think I told John what the call was about. I do remember waking up the next day, Monday, and getting up to go to my post-surgical appointment. I don't remember how I got there. I remember changing in an exam room, and telling John to take the kids to McDonald's. I remember asking the doctor not to touch my abdomen to examine me. I remember begging, crying, pleading with her because I was in so much pain. She said she was sorry, and did so anyway. She quickly left the room. The pain became so intense, I could no longer stay still. I began walking around the room crazily, throwing up blood everywhere. I was doubled over, and couldn't call for help. I kept pacing and waiting for the doctor to come back, but she didn't. It was probably only fifteen minutes, but felt like an eternity. I opened the door and could see a woman typing in an office across from me. I mouthed the words, "Help me." She got up, but I don't remember what happened after that. I came to in a wheelchair covered in a wet towel and soaking. I was being taken back to the post-op floor of the hospital. I remember writhing around in bed once they got me into a room, unable to speak and staring at a group of surgeons at the foot of my bed. They kept asking me what was wrong, but I couldn't talk. The pain was horrible. I was heaving blood and wetting myself. I looked down and saw my gown and bed sheets were black. My pee was black. I don't remember anything else until after they put me back on dilaudid. They immediately called a gastro doctor to come and consult. He did an ERCP with sphincterotomy the next day to cut a gall stone out of my common bile duct. The surgeon who did my original gall bladder surgery came to my room to tell me, after the procedure, that I had pancreatitus that was caused by the ERCP and having the stone removed. He said that this was a common occurence.

UH, NO BUDDY. You didn't do your job right, because you are a lame excuse for a surgeon and you didn't complete the procedure by flushing the ducts with dye and doing an xray to make sure you didn't leave anything behind, and no one listened to my concerns. You all accused me of being a drug addict.

I stayed on the post-op floor on high doses of antibiotics, having my blood sugar checked every few hours, and drugged up like crazy. I was not allowed to eat or drink. The nurses left emesis basins all over my bed, bedside table, on the floor, and on my tray filled with bloody vomit for days. My sheets were not changed. I was not offered help to shower. My mother called and complained at the nurses' station even though I begged her not to. They would come in with snide remarks and be mean. I finally asked her to stop complaining because it was making things worse. But, over the next several days, I started to get better. Finally and was able to go home. I had several bouts of pancreatitus over the next year but have mostly recovered from it. I had lost 50 pounds.

In the several months afterward, I noticed I had been short of breath quite a bit. Sometimes going into what I thought were asthma attacks. I went to the E.R. one night during a particularly bad fit. I was told they feared I had a pulmonary embolism. A few hours later, the doctor came in and told me that it was not, in fact, an embolism, but a 4mm lung nodule in the upper quadrant of my right lung. I asked her what a lung nodule is. She said she didn't know what it was, it could be a scar, a tumor, or cancer. Then she turned around and walked out of the room. I was TERRIFIED.

I followed up with my good ol' family doctor who told me there was nothing to worry about and didn't have an answer for my symptoms, but that he wanted another CT in 3 months. I obliged. All the while I am weak, fatigued, having the "coffee induced diarrhea" every day. 3 months come and I go in for another CT. There are more nodules, still no answers. Do another in 6 months they say. Again I oblige. More nodules, still no answers. New ones keep popping up, but the 4mm nodule has not grown. Come back in a year they say. By this time, my husband and I move to another state, and I start to feel much better. My breathing improves, but it takes another 6 months for me to get back to feeling more "normal". Still have diarrhea.

Fast forward to 2011. March. The first day my husband is back to work after coming home from training in another state. It is 5:30 A.M. and he is getting ready to go to work. He is headed out the door and forgets his hat. I ran up the stairs to fetch it for him, and on the way down, at the very top step, my foot goes out from underneath me. I fall down HARD, sliding down all of the stairs. I tried hard to grab the banister, but I couldn't hold on. The moment my rear end hits the stairs I SCREAM in pain. I knew I broke my back. I held myself as still as possible, balancing myself on my hands at the bottom of the stairs. My husband heard my screams from the garage and runs in and tries to lift me. I said, "Stop! Don't move me! My back is broken. Call 911." So that's what he did. I was lifted on a stretcher and taken to the E.R. This hurt, but was no where near the pain I had felt before. After xrays, the doctor comes in and tells me I am fine, gives me a pain med shot, and sends me home. He said there was some degeneration in my lumbar area, which I knew about since 2003, but no other problems. I wasn't convinced, was in a fair amount of pain, but went home anyway. Over the next couple of weeks, the back pain got much worse, and I would sit with my head in my husband's lap and he would rub my back while I cried. After a month, I finally convinced my new family doctor to get an MRI of my lumbar spine. A few days after the test, her nurse calls me and asks me to come in for more xrays. At the top of the MRI, in my T11 and T12 discs, they see terrible compression fractures that are not stabilized. I was told that the E.R. doctor only x-rayed my lumbar spine and didn't see them. When I questioned him, I was told that "Those types of injuries don't show up right after they happen on x-ray. It takes a couple of weeks to see them." BULLCRAP. Anyway, they put me in a back brace and I begin months of physical therapy. All this time, no pain meds. I was able to get my doctor to give me Tramadol on a regular basis after a lot of argument.

So, six months go by, and here we are, moving again to another state. During our move, we stop in our home state to visit family. We stay for a month. At this time, my diarrhea isn't so bad. The Tramadol helps a lot. It slows down my bowels, and makes me feel better, taking away some, but not all of my pain. Enough to handle anyway. One afternoon, my husband and I snuck away leaving our kids with my parents to go out to dinner. We ate at a seafood restaurant. Not an hour later, I was in the bathroom with horrible cramps, and an occular migraine. EVERYTHING I ATE CAME OUT. Then lots, and lots of blood. Just blood. I went to the hospital and was examined. They acknowledged that I was bleeding, gave me oxycontins, put "abdominal pain" on my discharge paperwork, and I was out of there in half an hour. My family was very angry and encouraged me to see a local doctor. I saw him a week later, and he scheduled a colonoscopy that I had the following Wednesday. They found nothing even after a barium enema.

So, here I am now...30 years old. I have a good local doctor. I have gone over my history with him, and he assures me that we are still trying to figure out what is going on. He prescribes Tramadol to me each month. I take two tabs twice a day...sometimes three times depending on pain levels. In June of last year, I noticed a rash popping up on my right leg. After a couple of months of using cortisone cream and athlete's food cream and whatever I could think of on it, I showed it to my doctor, who thinks it's eczema. It's raised and is pink bumps that are itchy and feel like really deep blisters. It will not go away and is spreading now. I have a few bumps on my left foot too. Still having diarrhea which he thinks is diverticulitus. He sent me for an abdominal ultrasound and discovered I have problems with ovarian cysts as well. I saw him on Dec. 31st because I started having mysterious arm pain. It's killing me now. My hands hurt all the time like crazy. I have a lot of pain in the center of my back that feels like I am getting hit over and over again with a lead pipe. I can't even lift my coffee cup up into the microwave. It hurts to type. My hands and arms, back, knees, everything hurts so much. It is very hard to get out of bed in the morning. I have lost ten pounds in the past two weeks, and feel very weak. The Tramadol doesn't really help anymore at all.

Last Wednesday was my two year follow up CT for the lung nodules. I saw a new pulmonary specialist. The nodules in my lungs are stable now, but I had filled out forms for her with my history on them. She took one look and said that she is sending me to a gastro doctor right away because she is almost 100% sure I have Crohn's. I called my mom at work and we both started to cry. I have seen many pulmonary doctors, cardiologists for palpitations, multiple visits to the E.R. for bloody diarrhea. I have lost hope in the medical community and I don't trust anyone. I AM HOPING TO GOD I HAVE AN ANSWER.

I've been a lot more ill these past few days, and the pain is really getting to me. I am waiting to hear back about seeing the gastro doctor. I have to travel to see her, but I am willing to go as far as I need to, to finally get help.

There are a lot of other events that have happened between now and back then, but I just can't type anymore tonight. I'll add what I can with time...anyway. Thank you for reading this. I apologize again for it being so long. I know you guys will understand me more than anyone does. Thank you.

Michelle
 

nativesith

GTA ModLeader Psx-Scene
Location
Hobbema,Alberta
Your story is unbearable, and reminds me too much of what happened to me. I remember hearing comments from mean nurses who called me a drug addict and a alcoholic.
Undiagnosed waiting on the call from GI, taking forever.
Feelin better now that I found a Laxative that works with out casing bleeding.
But I can relate to a lot of what you say, like the bump like enzema.
 
Thank you nativesith. I read your story too, and my heart goes out to you. Sending lots of prayers your way! I'm sorry you have gone through everything you have had to deal with. :-(
 

nativesith

GTA ModLeader Psx-Scene
Location
Hobbema,Alberta
Thought I was feelin better til now, starting to feel hot with pain in my joints , knees and back.
I will make it.
Sending you prayers n hugs, we will get through this.
 
Michelleleigh, I just wanted to send support and hugs your way. It's utterly horrendous the suffering you have had to endure. I truly hope the GI is able to help you! Please keep us updated with your progress.
 

afidz

Super Moderator
Wow, you have really been through a rough couple of years! I am shocked to read about your hospital stays. It is not uncommon for people with Crohn's or other IBD's to be called pill seekers, or even better they say "you have a chronic condition, you just have to deal with it" Its sickening really.
Crohn's can manifest itself in several different parts of our bodies, but I didn't know it could manifest in our lungs, and to think that is what is leading to your diagnosis. I am going to copy and paste the link to the extra intestinal manifestations forum, take a look around there, it may help figure things out as well.
http://www.crohnsforum.com/forumdisplay.php?f=81
Another good place that you might want to try looking for support is the undiagnosed club, even though you are close to a diagnosis, it still may be beneficial to you, and your story may help other people who are currently trying to get diagnosed, so here is the link for that
http://www.crohnsforum.com/forumdisplay.php?f=75
I hope you get diagnosed soon and can start getting treatment, I am sure it will make the world of a difference. I am always around if you have any questions or just need someone to listen
 
Oh dear Michelle,
I feel so bad for what you have gone thru hun! I know so many people on this forum that have gone thru similar, although not quite as bad as you circumstances! Especially the parts where it seemed noone believed you or accused you of being a druggie. It is a crying shame. I will hope and pray you get your answers now and that the end of all this craziness is here and you finally get the help you need. God bless you hun! Saying a prayer for you!:heart::heart::heart:Teresa/ 723crossroads
 
I promise I will keep you guys updated. Thank you so much for reading! It felt really good to get up this morning, and see all of your supportive replies! I appreciate it so much!

I will definitely check out those links today!

I have a few other symptoms that I failed to mention last night. My hair is falling out very badly. It has thinned so much, I have bought a wig. I don't wear it though, and have my hair cut really short. Did any of you lose hair before your dx? I run fevers sometimes, mostly low grade. Sometimes I don't even know I have a fever. I had a lot of stomach pain until I was treated with Flagyl for h. pylori about 3 years ago, but it's been better since then.

I'm going to rest now. I'm hurting pretty badly right now. I'll check back soon!

Michelle
 
Hi again Michelle! My hair has thinned alot too, so I began taking 5000 mg. of biotin everyday and I use Garnier Fruictis "Fall Fight" shampoo. It seems to have slowed down the loss and don't notice anymore except the normal amount.
Maybe try the biotin and the new shampoos that help stop hair loss. Keep us posted on the Dr. appt.:heart:Teresa/723crossroads
 
It really does sound like you've been enduring an absolute nightmare! Wish I had some good advice, but all I can offer is to say how sorry I feel this is happening to you.

I haven't had much faith in the medical profession either, and don't feel many doctors fully understand the amount of suffering and pain endured.
 
I had physical therapy for my "arm pain" tonight. Because of the way my doctor worded the refferal, she is only allowed to touch my left hand. She said I had severe weakness and very limited flexibility in both my arms during her evaluation. I got a 2 minute hand massage and was sent on my way. She told me that my pain isn't even originating in my wrists, and that this round of pt will do me no good. What a waste of time.

I lay in bed every night hurting so bad that I eventually drift off deciding whether or not I should go to the E.R. because of the pain. Will they help me at all? Or will they do what everyone else has and brush me off? Is it even worth it? I'm going to be in pain one way or another. If they give me stronger meds, what happens when they run out of medicine? I just want to cry. I am so frustrated.
 

afidz

Super Moderator
I think once you will get a confirmed diagnosis things will start getting better, and you are so close to that point. try to hang in there. I would also consider seeing a rheumatologist for your joint pain. Depending on where your Crohn's is, you might be able to start on Humira, which is also great for arthritis and joint pain, killing two birds with one stone. I'm keeping you in my thoughts, I really hope you feel better
 
Holy crap what total dropping of the ball then kicking it in your face! Judging from your story, the medical community where you should have there license revoked and banned from ever practicing again. Hopefully you get a Dx. soon and things will get better for you. Good luck and hope you feel better.
 
well, you weren't kidding when you said you had a bad experience with military doctors. I must say that I can't complain as much as you sure as hell can. And I really really hope you get your problems resolved sometime soon. Have a great day...
 
I am trying to get into an LPN program near where I live right now, and am taking prerequisite classes right now. I am hoping to get my dx and start something soon Humira sounds promising. I really want this all under control before I start this program this fall.

Thank you for all of your support everyone!
 
Hi Michelle - wow I am so terrified to hear what you've been through, and I can only hope it ends soon. (As I hope it does for me too, but as its only been two months I can hardly complain here)

As I read through some of the things you've experienced, a lot of it sounds like Crohn's related, but a lot of it doesn't. While I'm sure just about all of what you've described can happen with Crohn's, the combination at least causes me to wonder if it may be Behcet's. we have a member on here who went through many years of hurt trying to figure out what was wrong, had many of the EIM's you have, and eventually was diagnosed with Behcet's just recently. I'll tag her in case she sees this, maybe allieinwonder can give you advise....and if it were something that seems to fit for you, you can bring it up to your doctor. In all honesty it may very well not be Behcet's, but since not a whole lot is known about it and it isn't common, it could easily be missed, and just a quick mention could avoid that. I feel like it sounds morbid saying oh you might have this or that, but at this point I'm sure you know something IS wrong, so anything that can help you pinpoint it faster is what you want to go for. I hope you feel better soon soon SOON.

The one symptom I know she had commonly that you don't mention is mouth ulcers, do you ever get those?
 
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Hi Michelle,

I sent some virtual ((hugs)) but wish I could hug you for real--very gently of course! I grew up in the military and can relate to depending upon that system for health care. One time I had an allergic reaction and hives were swelling my throat closed and I begged and begged for an adrenaline shot. One older doctor told me that I had a virus and kept telling me if he gave me antibiotics I would get a yeast infection. I was too weak to punch him, but thankfully, I was given the shot when I started blacking out. I was glad to get out of that system!!

I am keeping my fingers crossed that they find out what is wrong and help you. I can't stand the fact that some of us are looked at as drug seekers and recently wrote a blog post on that. It's demeaning and rude and infuriating and all too common. Ugh!!
 
Hi Everyone,
I just wanted to stop in and keep you updated.

I went and saw my PCP today. My back/hand/arm pain still almost sends me to the E.R. despite being on pain meds already daily.

Anyway, I discussed my referral with him after seeing the pulmonologist and he agreed that I most likely have Crohn's. He is sending me to a gastro locally very soon, which is good news, since now, I won't have to travel far to go see them. I also told my PCP what the physical therapist told me, and after another (more thorough) exam, along with the results of other tests, he says he thinks this is rheumatoid arthritis causing all of the arm, back, and joint pain. (It's my knees too, they just don't bother me as much.) I told him that in my research arthitis is commonly linked to Crohn's and he agreed. He says that he knows I have an autoimmune disease, we just don't know what or which yet for certain. He held my hand, and told me to hang in there. We are so close to knowing for sure. I will be on my way to the gastro soon for tests. I'm not looking forward to them. I have already had a colonoscopy, upper G.I., and barium enema. NOT FUN! LOL! I don't want to have to do ANY of those things again...LOL!

I do feel much closer to getting treatment, but now I am worried that I have Crohn's and R.A. Is this a common thing? Do people even have both? Wouldn't this get lumped together into Crohn's? I haven't done any research on this yet. Thoughts are appreciated!

I just wanted to thank all of you too, for giving me hope. You really have supported me, even more so than my own family, I think. I know some of you struggle and have lived through terrible pain and sickness, and I send you all my love, prayers, and hugs too! I have been sort of focused on myself as of late, and I wanted to say I am sorry for not returning all of the support I have been given, but I WILL! I PROMISE! Once I get things in my life under control, I will be "more" there for all of you!
 
OH! BTW...
I wanted to answer back to the questions above about Behcet's...No I don't have mouth ulcers. I think I've only had one fever blister in my life, and no other sores in my mouth thank goodness. I do have the nodular rash on the tops of my feet, it's been there since last May or June...almost a year. I wear contact lenses, but don't have any serious eye problems. Just good ol' near-sightedness and astigmatism. Thank you for the suggestion though. I know some of the things I wrote in my orginal post didn't seem like they fit in with Crohn's symptoms, and some don't (like falling down the stairs) I just wanted to include it in my story because it is so important to it. I also left some things out because I just don't have the strength in my hands to type everything out all at once. It took me over 2 hours to type the first post, because I had to take breaks...lol. I'll give as much info as I can. I am pretty much an open book. :D
 
Hi Everyone,
I just wanted to stop in and keep you updated.

I went and saw my PCP today. My back/hand/arm pain still almost sends me to the E.R. despite being on pain meds already daily.

Anyway, I discussed my referral with him after seeing the pulmonologist and he agreed that I most likely have Crohn's. He is sending me to a gastro locally very soon, which is good news, since now, I won't have to travel far to go see them. I also told my PCP what the physical therapist told me, and after another (more thorough) exam, along with the results of other tests, he says he thinks this is rheumatoid arthritis causing all of the arm, back, and joint pain. (It's my knees too, they just don't bother me as much.) I told him that in my research arthitis is commonly linked to Crohn's and he agreed. He says that he knows I have an autoimmune disease, we just don't know what or which yet for certain. He held my hand, and told me to hang in there. We are so close to knowing for sure. I will be on my way to the gastro soon for tests. I'm not looking forward to them. I have already had a colonoscopy, upper G.I., and barium enema. NOT FUN! LOL! I don't want to have to do ANY of those things again...LOL!

I do feel much closer to getting treatment, but now I am worried that I have Crohn's and R.A. Is this a common thing? Do people even have both? Wouldn't this get lumped together into Crohn's? I haven't done any research on this yet. Thoughts are appreciated!

I just wanted to thank all of you too, for giving me hope. You really have supported me, even more so than my own family, I think. I know some of you struggle and have lived through terrible pain and sickness, and I send you all my love, prayers, and hugs too! I have been sort of focused on myself as of late, and I wanted to say I am sorry for not returning all of the support I have been given, but I WILL! I PROMISE! Once I get things in my life under control, I will be "more" there for all of you!

Plz take the time to hit search at the top of your page and write in arthritis or rheumatoid arthritis. It def. does go hand in hand with crohn's, I have arthritis very bad and fibromyalgia pain all over. I see a rheumatologist too. She keeps coming up with drugs to help my pain, but most I've tried have terrible side affects so I am stuck with oxycodone and they don't like giving it out.
Plz explore the forum as there are so many side things that go along with crohns. You will be saying, "Oh that's why I have this rash or cough etc.... May God bless you on your journey and I hope you get all your answers soon!:heart:
 
May I recommend Dragonfly speech recognition software? I think it's about $100 but with the trouble you're having if you use a computer even occasionally it may be worth the investment.
 
I have asked my husband for Dragon software. Maybe I'll get it for Valentines Day! Lol! Thanks guys! I will definitely look around!
 
At the ER tonite. I couldnt control my arm and back pain with the tramadol. It hurts too much.

The staff doesnt seem to care too much, as no one has checked on me in a couple of hours. Do doctors ever make you feel like you're nuts? I have a hard time with this. Maybe its denial or something, but im afraid they wont find anything on the tests. Sometimes I'm not sure if I really am feeling all this. Maybe I'm just delirious.
 
After I had my first surgery, I started feeling a lot of abdominal pain six months later. My GI told me I had IBS on top of IBD and was hypersensitive. I would sit on the toilet, sweating and shaking, telling myself that it was all in my head. I tried to convince myself of this until I ended up in the ER with another bowel obstruction. It wasn't in my head and I had a second surgery because my GI wouldn't listen to me and help me tweak my meds. Believe in yourself. If you're feeling pain then something is wrong. I always felt that if my GI believed it was all in my head then why didn't he send me to a psychologist? I would have willing gone and remained open. But I think he was just "over" me because my case was complicated.

Sending big hugs! I hope you get answers very, very soon!
 
At the ER tonite. I couldnt control my arm and back pain with the tramadol. It hurts too much.

The staff doesnt seem to care too much, as no one has checked on me in a couple of hours. Do doctors ever make you feel like you're nuts? I have a hard time with this. Maybe its denial or something, but im afraid they wont find anything on the tests. Sometimes I'm not sure if I really am feeling all this. Maybe I'm just delirious.
Does the ytramadol give you a headache. Just curious because I get one everytime i take it and won't take it because of that now. It didn't seem great for the pain either. 50mg dose. What do u think?
 

afidz

Super Moderator
Crohn's ,Rheumatoid Arthritis, and Psoriasis can all be treated with Humira, depending on your diagnosis ( if you do have Crohn's) and where it is located, Humira might be a good option. Kill 2 birds with one stone. I don't remember if you mentioned, are you going to a Rheumetologist?
 
Michelleleigh, You are not delirious at all! We all go thru that feeling after the pain stops, of "Oh maybe it is this or that and not crohn's. But while you are going thru it, you know it's crohn's! IBS doesn't cause all those other symptoms.:D
 
May I recommend Dragonfly speech recognition software? I think it's about $100 but with the trouble you're having if you use a computer even occasionally it may be worth the investment.
It's actually built right into Windows 7, no need to purchase.

You can also download Dragon naturally speaking--free app for the ipad, iPhone, and iPod touch. (Not sure about android tablets.)

I type faster than i think, but downloaded it for my mom, who uses it all the time. What's nice is that it no longer requires any "training" time, recognizes most voices and words immediately.

At the ER tonite. I couldnt control my arm and back pain with the tramadol. It hurts too much.

The staff doesnt seem to care too much, as no one has checked on me in a couple of hours. Do doctors ever make you feel like you're nuts? I have a hard time with this. Maybe its denial or something, but im afraid they wont find anything on the tests. Sometimes I'm not sure if I really am feeling all this. Maybe I'm just delirious.
Tramadol is about as effective for pain as codeine.

It's not an opiate, it's not even a federally controlled substance. It is supposed to produce"opiate-like" effects, but who knows what that means?

It's used to treat chronic pain because it's not as addictive, but no where near as effective as an opiate based pain medication.
 
Hmmm. I was sure I posted a reply before, but I don't see it now. No, i dont get headaches from the tramadol, but I do know that it is common. I often get dry mouth and it slows down my bowels. I have a hard time eating, so I lose weight taking it. It does make me very thirsty though. I take 100mg twice a day. It used to work for me, but doesnt seem to help anymore. They gave me percoset at the ER. (10 tabs). I managed to make them last until this morning, when I took the last 2. They seemed to help more. I did wake up Thursday night with both of my hamds hurting so much, that I was dreaming that they were being smashed under a block of concrete. Even AFTER I had taken 2 before bed and it had only been a couple of hours. I remember thinking,"Why.does this hurt so bad? I just took 2 pain pills? I dont see a rheumatologist yet. I need to get in to see one fast, as it seems that this pain is getting a lot worse by the day. I can barely straighten my arms now. I've lost so much mobility in my elbows. My doctor (bless his heart) wants to treat me on his own, but doesn't expect to see me again until after I have an endoscopy. I need to call my nurse Monday to get more Percoset. I have been avoiding opiates as much as possible, but I can't any longer. This elbow/hand/shoulder/knee stuff has surpassed all of my other symptims by miles. I dont know how much more of this I can take.
 

afidz

Super Moderator
I edited this post a few days ago to make the questions on Tramadol a seperate thread, but I didn't delete anything, I looked in the other thread to see if I moved it by mistake but it wasn't there. If you notice that you lose a post again let someone know, it could be a glitch in the system
I hope you get in to the Rheumy fast, it sounds like you are miserable :(
 
Hmmm. I was sure I posted a reply before, but I don't see it now. No, i dont get headaches from the tramadol, but I do know that it is common. I often get dry mouth and it slows down my bowels. I have a hard time eating, so I lose weight taking it. It does make me very thirsty though. I take 100mg twice a day. It used to work for me, but doesnt seem to help anymore. They gave me percoset at the ER. (10 tabs). I managed to make them last until this morning, when I took the last 2. They seemed to help more. I did wake up Thursday night with both of my hamds hurting so much, that I was dreaming that they were being smashed under a block of concrete. Even AFTER I had taken 2 before bed and it had only been a couple of hours. I remember thinking,"Why.does this hurt so bad? I just took 2 pain pills? I dont see a rheumatologist yet. I need to get in to see one fast, as it seems that this pain is getting a lot worse by the day. I can barely straighten my arms now. I've lost so much mobility in my elbows. My doctor (bless his heart) wants to treat me on his own, but doesn't expect to see me again until after I have an endoscopy. I need to call my nurse Monday to get more Percoset. I have been avoiding opiates as much as possible, but I can't any longer. This elbow/hand/shoulder/knee stuff has surpassed all of my other symptims by miles. I dont know how much more of this I can take.
Definately time to see a rheumy and or neurologist.
Hope you get the pain under control hon.
 
Hi everyone!
I just wanted to follow up since it's been a long while since I posted. After this, I will move on to other threads.

I have no updates. Unfortunately. I have yet to recieve a referral to a rheumy..and my appointment with the gastro isn't until May. In the meantime, I am miserable. I've broken out with the mystery rash over most major joints, and my hands are so swollen in the morning, that I can barely bend my fingers. It goes down after an hour or so, but the pain is worse than ever. Having some weird bowel stuff. Constipation and lots of weird, loose stool. It just doesnt feel right, like it's a bowel contradiction....lol.

I've been continuing to control the pain with tramadol, but it doesnt help much, as always. I try not to complain too much.

I thank you all for your support and I will come around more often. :)
 
Michelle,
Have you ever tried taking gingeroot capsules? The recommended daily dose? I have been for awhile now and along with the vit. D3 and other supp. it has really made a huge difference in my joint pain issues. it's worth a try!
 
At this point, I have tried cherry juice and raisins soaked in gin. Lol! I know it sounds strange! They're home remedies my mom and aunt insisted I try. I also use aloe and marshmellow root. I will try anything! Thank you for the advice!
 
At this point, I have tried cherry juice and raisins soaked in gin. Lol! I know it sounds strange! They're home remedies my mom and aunt insisted I try. I also use aloe and marshmellow root. I will try anything! Thank you for the advice!
No, it doesn't sound crazy. I've heard of these too. I hope you are on vit.D3 too.
 
Michelle,
So sorry to read your story and hear that you were treated so poorly in the military hospitals. I cannot say that I am surprised though. I have BTDT (been there done that). We have very similar stories. When you have an auto-immune disorder you typically get plenty of freebie symptoms to go with whatever your "Main" medical issue is that your body has to fight. In my case, I started with the Neuropathy and Seizures and quickly found out they were related to my Lupus.
I had always had a horrible digestive system but was officially diagnosed with Crohn's and Ulcerative Colitis. Yep...I am one of those that has BOTH. I am currently in one of the worst flare-ups I have ever had. Trying to figure out what to do next. Maybe even considering surgery.
I hope things get better for you very soon.
 

nativesith

GTA ModLeader Psx-Scene
Location
Hobbema,Alberta
Hiow are ya ML? It has been a while. I ave been fightin for my rights in my real life.
I feel like a UFC fighter...This corner skinny lil nativesith VS the World lol!
But
I am getting better...at taking over the WORLD Bwa ha ha!
 
Holy shit. I don't even know what to say. I felt sick just reading your story. I just wanted to say I seriously hope you can find out exactly whats going on and can be treated. And the back to top it all off, I can barely even believe it. HANG IN THERE!

-Also, you definitely aren't crazy. I started getting sick when I was 19 and doctors and friends had told me I was a hypochondriac for 10 years before I was officially diagnosed. I had to demand the right tests to be done against their wishes after months of arguing and after it was all said and done I was given nothing more than a "sorry about that, guess you were right!". FEEL BETTER SOON.
 
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