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Post by MichelleP on Mar 1, 2007 19:18:59 GMT -5
I am 24 years old and I have Crohn's disease and Endometriosis! I always assumed I had Endo, but was never sure until I called the surgeon that was in my abdomen 4 years ago. He told me this morning that he did find Endometriosis on my appendix back then. I was so relieved, finally I have a real diagnosis and maybe I won't be labled as a drug seeker in the hospitals now. Due to my Crohn's, I am unable to take any type of hormones or anti-inflamatories; which means I can only take nausea meds and tylenol(vicodin is too much for my tummy)! This normally doesn't help and I end up going to the emergency room screaming in pain, and seeming almost posessed. I can't take this anymore. I have gone through Doc after Doc and none believe that my pain is as bad as I say it is. I can't handle the pain every month anymore, I just can't. It hurts so bad, so so so bad. I made an appointment with my new Doctor for March 13th. I am going to beg him for the laproscopy thing. Even if I do the surgery, how am I going to live with this illness if I can't take any meds that ease the pain. The Doc just tells me to start taking my phenegren (nausea meds) suppositories a day or two before my period, it doesn't help. I just can't do this anymore. Please help someone. I am desperate and feel like i'm dying physically and emotionally. Not to mention the pain from my Crohn's as well. Please please someone, I need advice on managing my pain. I can't live like this anymore.
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Post by AussieBird on Mar 1, 2007 20:39:23 GMT -5
I will pray for you Michelle. I was so overwhelmed when I read your message, your situation sounds so unbearable. I really hope a solution is found as soon as possible. No one should have to live like that. Big big big hugs to you from Australia.
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Post by kb on Mar 1, 2007 23:24:28 GMT -5
It is a hard and frustrating illness. Youve come to the right place for support! I remember vividly feeling your desperate pain and frustration, its a horrible place to be. But we'll be here for u to support u through this, and there is lots of advice if u browse through the forum on ways to manage the condition. Have u ever been to a naturopath??? You might find answers there, there are other solutions if u cant take hormones, personally i no longer take them and am trying a more natural approach with herbs and supplements. Maybe a naturopath can help u find a way to help u. And by all means, if u want a laprascope, push for it, it may be enough to relieve the symptoms ur having, then u can consider other ways to manage it. Sorry to ramble, but dont lose hope, we've all been there, but u must never lose hope, there is always a solution out there
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Post by angelas on Mar 2, 2007 12:20:30 GMT -5
well said kb! It is such an overwhelming experience no matter how long you've had it for. Even now once I start to feel my period coming I start to panic, knowing the pain I am about to suffer and awful I am going to feel. I always try to remember that it is best to take things one day at a time. You cannot change yesterday, and don't know tomorrow, so today you do what can to feel comfortable and take care. Tomorrow is a new day, and you may have new ways to cope.
There are threads posted under the pain management section as well that include a lot of natural treatments that are worth looking at. I was at my witts end when I came across so many new ways to deal.
We are all here for you to help you get through this. Chin up! you will make it through this.
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Post by michellep on Mar 2, 2007 13:35:09 GMT -5
Thank you all so very much. It feels so good to know that I am not alone in this. I did start looking into acupuncture, but I did not think of looking into herbal treatments. I will start today. This last one was the worst I can remember having and I feel little wierd sharp pains in a few places in my lower abdomen right now, even though i'm done with my period. I don't know what is going on. I have about 20 more days until it starts again and I am counting the days. I just can't believe how much pain a persons body can take. I am so glad I found you ladies. Just these few replies have boosted my spirits. Thank you again
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Post by camille on Mar 2, 2007 14:07:38 GMT -5
Reading your post made me feel like I did when I first found this web site - so sad for the years we have spent in pain and the years I spent not knowing anyone else who experienced the level of pain I do. I know a lot of women who say they get bad cramps but this is so beyond "bad cramps" - its like someone wrote in another thread "For minor aches and pains" on the OTC pain relievers - what the h#*l is that?!
The greatest pain reliever I have found here is choice. No, maybe it is validation and then choice. Or validation, acknowledgment, acceptance, and choice. Before my laparoscopy and finding this website which has provided me with invaluable resources, information, and support, I just "survived" my body. Now I am healing my body. Even when it hurts like it wants to kill me, I choose instead to be someone healing from a disease rather than being consumed by it.
You have found the right place...
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Post by shona on Mar 2, 2007 14:52:28 GMT -5
you,re in my thoughts hunny.you,l get great help on here.
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Post by cherry on Mar 2, 2007 16:31:11 GMT -5
Hey Michelle, sorry to hear things are so bad, and on top of Crohn's disease too. you seem to have been very brave so far in the face of disbelief from so many! If your doctor can do this, maybe you could loan a TeNS machine through your doctor to see if that helps? It helps me a fair bit cos my NSAIDs alone don't cover all the pain and I can't take opiates either. A good pure diet (though i guess with the Crohn's you have that covered!) can help with pain reduction, and there are lots of threads here about alternative therapies xx
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Post by ouchy on Mar 2, 2007 16:50:35 GMT -5
Hi, Michelle. Sorry for everything you are going through! You are very strong to deal with this much and keep going! Hope you will find some answers and relief soon. Welcome again.
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Post by michellep on Mar 2, 2007 17:22:44 GMT -5
Wow Camille, when you said you were just "surviving your body", oh my gosh. That hit home, I am doing that now. And you made me actually laugh out loud when you said "minor aches and pains, what the H*** is that, lol. I have found myself praying to god every day for the strength to get through this pain. I am very curious to what TeNS machine is Cherry? Please let me know As for my diet, I am unable to eat any fruit or vegetables and seeds, stuff like that because I can't digest it due to my Crohn's. I was reading a thread about the "no no food list" and unfortunately, I eat alot of sugar and meats, no veggies =( Every Doc I see gets a road block because everything conflicts with the other. That is my main reason for going to school. I plan to be a Doctor of Internal medicine in 6 years. (Thank goodness for online classes) I am going to dedicate my life of suffering and experience to help others one day, I just have to get through this.
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Post by cherry on Mar 2, 2007 18:02:30 GMT -5
A TeNS (transcutaneous electric nerve stimulation) is a little machine that sends little electric pulses through your skin to block pain signals to the brain, and has a few different frequencies and strengths so you can adjust to whatever works for you. Sometimes docs know of it, some are quite familiar with it (it can be used in conjunction with physio to add with recovery from nerve damage) and some have never really heard of it and will want to do research before discussing it more with you. The only thing is if you suddenly turn it up too high it can cause your muscles to clench! It's not medicinal, no toxins and no side effects. the different frequencies stop you becoming 'used to' it. There are small pads like those used for ECG that you stick on the affected area. I have the ova, made for period pain but I am looking to buy a stronger one. This is the website i bought it from, they deliver to the US as well and you can email to ask about delivery charges etc. www.tens.co.uk they do a TeNS for childbirth too which I will want to try I think. See if you doctor can get you one to try first, I really hope it works for you cos it seems it could be helpful if you have cramping with the crohns too xx
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Rin
Full Member
Posts: 124
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Post by Rin on Mar 3, 2007 9:16:40 GMT -5
Hang in there Michelle. You have come to the right place for help and advice. Stay strong. Rin
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Post by macymoo on Mar 5, 2007 11:57:08 GMT -5
Hi, I had terrible pain like you and I understand the difficulties you have with meds because of Crohn's. My best advice to you would be for you to go and have a food allergy test (blood tests) York tests do it and cut out the foods it says...take Vitamin C and a good multivitamin. I treated my endo by cutting out foods, I also also suspected of having crohn's as I had terrible inflammatiory stomach issues..I practicially spent all day on the toilet. Please go and get these tests done and if you can cut out wheat and dairy and cocoa to start with that would be a great help. In Tesco's and Sainsbury's in the Uk we have every wheat dairy free food you can think of.if you are in the States I am sure there are health food stores that provide this. I take herbs and homeopathy too but please get advice about herbs as they shouldn't be taken with meds......Do not feel like you will always have this pain...you can get it better........maybe not totally cured but definately to a managable state.
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Post by shona on Mar 8, 2007 15:02:40 GMT -5
hey michelle,just wanted to check how you are.
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Post by michellep on Mar 14, 2007 17:26:17 GMT -5
Thank you very much for your concern Shona =) I'm actually not doing too well. Last night I woke up at 2am with what felt like a horrible explosion in my lower right abdomanol area (where ovary is). The pain lasted for about 10 seconds and I felt a wierd gushing/throbbing feeling at the pain site..... was very wierd. I called my doctor and he just gave me Vicodin (which I can't believe because they all think i'm a dam DRUG SEEKER!). The nurse said he is trying to work me in for an earlier surgery (at the moment it is on April 9th).
I'm really scared. I have had 2 constant sharp pains on both sides every second of the day since my last period. Ever since last nights episode, I am limping big time because of the pain. It hurts when I have a bowel movement too. I am DEFINITLEY not going to fill the Vicodin. I will suffer if it will make them believe that i'm not lookin for a high. I just want to be normal, that's all.
Has anyone ever felt anything like what I experienced last night? My doctor just doesn't seem to be too concerned.
P.S. My emotional state is improving, but I am really depressed. I have to fight this, and I don't want to give up. Thanks for caring =)
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