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i am at the end of my rope

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Crohn's Disease
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Posted 2/11/2009 3:01 AM (GMT 0)
I have a relatively "mild" case of crohn's as per a pill cam. No strictures, no blockages, no surgeries. I have pain every day, beginning early afternoon and winding up to the crescendo at about 4. there it stays until I take a sleeping pill and fall asleep, I feel so hopeless. I see aPM who gives me kadian and msir for break through but it doesn't help. i have recently been taking them by the handfuls. it is just too tempting not to try and get rid of this pain- even if it were for a day or a week. the pain is next to my navel on the right side, and it radiates down the front of my thigh, under my ribs, and i feel a mass when it is the worst. I had a normal CT, and normal labs. i look fine on paper. how can this be? i go for eveluation for a celiac plexus lock on thursday, and if that doesn't work, i have to find some higher dose pain meds. i have basically not come out of my house except to go to work and to walk my dog for 2 years. this is no life, i have no support except fpr the peolpe that are in this group. i try to act normal around my friends but i am always doubled oever- to the point where it must seem theatrical.

If any of you are the praying sort, pleaase pray for me. I just can't do this much longer. it is too hard.

ps i have a great psychiatrist, and a greaat rheumy. my pain md is avoiding me, because she doesn't know what to do with me. so, if nothing pans oout on thursday at u of MD, I will be headd straight through withdrawal- CT. please pray. i am so scared.

Posted 2/11/2009 3:17 AM (GMT 0)
oh survivor I am so sorry u are dealing with this at the moment but it will get better, I know its easier said than done. But I feel your pain. Beware of pain pills though, I was on oxycontin and endone pills for a long long time to help with my pain but I found the problems I got from them was worse than the pain I have been dealing with. You have to be careful not to get addicted to them either and they are only a bandaid for the pain, you really need to get to the bottom of what is going on and why u are suffering so much. Perhaps a second opinion? Maybe there is more going on in there than what the pill cam has shown. Even though Ive had this disease for 21 years Im no expert but u shouldnt have to put up with pain that floors u. Keep us posted and im sure someone else can offer better advice, thats the beauty of this forum, everyone is only too happy to help out. Please hang in there and look after yourself
(((((HUGS)))))
Posted 2/11/2009 3:18 AM (GMT 0)
Has your doctor given you anything that is actually meant to treat Crohn's? It seems like they would put you on a round of prednisone to knock out the obvious flare you are experiencing. And are you seeing a gastro doc?
Posted 2/11/2009 3:18 AM (GMT 0)
yeah We feel your pain, 49 ! (Ah , if only, eh !) Wish I could wave a wand...
I remember well feeling the way you do at present. (Although I had the dubious advantage of not having a pain management doctor or pill cam.) The only thing I can say to you really is, your screen name says it all - you are a survivor ! And you know how I know ? nono Because every time I felt used up and broken and had nothing more left in me, it turned out that there was more to me than I thought. And that is always how people are. We are never our own best judges, and we can endure more than we would ever wish or imagine. yeah Crikey, listen to me, I sound like a shrink. eyes
Cold comfort I know, but from my perspective further down the tunnel I can only say, things will change, it will get better. Not necessarily cured, or sorted, but - it doesn't stay at a crescendo forever.
I know why you do it - I still do the same thing sometimes even nowadays - but trying to be normal around your friends is not what friendship is about, it gets in the way of closeness and the support you need so badly. Until I stopped hiding the real me, I never realised how much energy it sucked from me...
<<Hug>>
Posted 2/11/2009 4:02 AM (GMT 0)
i see a gi doc- i am on humira and entocort. I have failed most 1st line therapies. I hve tried acupuncture, heat/ cold, any variation in diet that exixts, i wear a lidoderm patch and take probiotics.i need this to be over. i feel like saying "mummy, please- i will be good- just make it stop! if you go to a dr,they give you meds for a month. If your sx or dx change, you cannpt switch meds, nor can you escalate the dose. so i sneak and take more of the breakthrough and run out too quickly. Doesn't anyone get it? we dont want to be like this. i just want my life back. it may not have been much of one, but it was much better than this. sorry to whine, i am just really down.
Posted 2/11/2009 4:17 AM (GMT 0)
survivor, is it possible that you pain has another cause besides Crohn's? I had pain similar to what you are describing, about 2 inches over from my belly button on the right, radiating down. Mine turned out to be caused by adhesions due to endometriosis. Everything was stuck to everything else and not moving properly. I was diagnosed (and fixed) when I had surgery to remove a cyst on my ovary. Nothing ever showed up in my colonoscopies because the adhesions were outside of the colon.

I'm not really sure if you are male or female but either way, could it be adhesions?
Posted 2/11/2009 4:26 AM (GMT 0)
woudn't they be able to tell with a ct scan, or an exploratory laparoscopy? i have had both. Interestingly enough, the exploratory procedure was done with a laparoscope and general anesthesia, and when i woke uo, for the first time i had no pain. i felt great. they had used long acting local to block the entry and exit, and it must have spread ariund, 2 days without pain. it was wonderful
Posted 2/11/2009 4:36 AM (GMT 0)
A ct scan might not show anything but I would think the laparoscopy would show adhesions.

I hope you find a solution soon!
Posted 2/11/2009 5:14 AM (GMT 0)
A huge and gentle hug, Survivor.

I'm a bit worried that you feel that you can't do this for very much longer. Have you been able to sit down with any of your doctors and map out a contingency plan of what you can do if you get to the point where you simply cannot do it any longer? Is there someone you can call, somewhere you can go, so that you can get some extra help?
Posted 2/11/2009 12:37 PM (GMT 0)
Hi Lets hope that your test on Thurs. shows something at least it would give you some place to start.Keep us posted. lol gail
Posted 2/11/2009 1:32 PM (GMT 0)

thank you being there. i am hoping that this appt will help me plan out a strategy. it has been difficult with my other docs- it is more along the lines of "try this and Iwill see you in a month-two months-three months. what they don't understand, even if reminded, is that one DAY is difficult to wait through if you are in pain.

thanks so much again- this is where i get my support, a place where people understand

Posted 2/11/2009 2:05 PM (GMT 0)
(((Survivor49))) I am so sorry to hear you are suffering so. Will definetly keep you in my prayers that your test shows something and you get on the road to recovery soon.

Hugs,
Gail *Nanners*
Posted 2/11/2009 2:31 PM (GMT 0)
survivor49, it's like your living the same life i am. I have been sick for the past 1 1/2yr's without much help from dr's or meds. I just started on 6mp and it seems to be working for now. I even went to the point of checking myself into a mental hospital. so they could see me 24/7 and it took about 6 days and i am feeling the best i have in a long time. it may be something you might want to look into. i know it sounds crazy but what do you have to loose? good luck smilewinkgrin
Posted 2/11/2009 2:47 PM (GMT 0)

((((((( Survivor)))))))

I am so very, very sorry you're going through such an ordeal, and seemingly not getting anywhere in your attempts to get help/relief from your docs.. while I am new to the crohns concept, I do have several years "experience" in dealing with chronic pain.. if  your current PM doc isnt proving helpful, get another opinion--see as many docs as it takes to find one who takes you and your symptoms seriously, and works WITH you to try and get to the bottom of the cause..   I know its tough, physically and emotionally exhausting at best, but you DESERVE to live as comfortably as possible.. you DESERVE RELIEF!!

I am very concerned for you.. I have been in that very dark "I just cant take this anymore" place.. you need to speak to a professional about how youre feeling.. a counselor, clergy person, someone you feel comfortable with-- but SOMEONE.. of course, we are all here for you, but you need to be in contact with someone who can help you stratigize a plan and ways to cope.. please dont let that go.. there is truly no shame in seeking help in times like this.. you did the right thing reaching out to the group..

again, I'm sending you hugs, and keeping you in my thoughts..

Chelley

Posted 2/11/2009 2:49 PM (GMT 0)

Survivor....you are absolutely correct in that you have found a great site for support. I must admit that I generally find myself on this site mostly when I am feeling bad. Why? Because I know that I will find something that makes my day better. You know what I'm talking of I'm sure.

Keep on keepin' on and don't settle in this valley you are in. There are peaks that you will find yourself on and see the beauty of life that surrounds you...

That may not be today or tomorrow but determination is something we Crohnies are not short of.

I agree with the suggestion of finding a second opinion, third opinion, etc...

In the meantime know that you are in good company here. For now, include in your regimen(sp?) a daily dose of HealingWell!

Posted 2/11/2009 4:02 PM (GMT 0)
Survivor, you say that they are going down the route of "see you in a couple of months". I know how much despair this engenders, I too had this for about 18 months. It was my opinion then and it is my opinion now that this was utterly useless in terms of therapeutic value. It got to the stage where I fantasised about coming into the office and setting off a rape alarm, and saying to the doctor, "That's how urgent it feels to me. 'Another month' is NOT GOOD ENOUGH !"
Happily, I ended up with a doctor who saw the light. nono But I learned in the end that doctors need their patients to be pushy, so that they find out who is really in pain. eyes Ironically, they need their patients to not be....so patient.
Most doctors, if you make them feel you are desperate, will pull out all the stops. If you are not actively showing them how desperate you are, then you are behind someone else in the queue who is doing that. yeah So a straightforward, vehement, "I can't wait that long, it's no good!" might be the way to go. Or do what I have done on occasion, and write down on a sheet of paper what daily life is like, and the emotional impact upon you. That generally gives the doc an insight into how it is to live with the disease, that he frankly rarely appreciates. shocked Their job is so complex, it is easy for them to start thinking in terms of processes and checklists, not basic human emotional needs. shakehead
((HUGS)) Keep us posted, and remember we care... yeah
Posted 2/11/2009 5:46 PM (GMT 0)
snohare- what a brilliant idea to write down what a day is like. i think that the more i can make myseld "hunan" and real, the better chance I have of getting help.
THank you so much for your support and suggestions. all of you. i will keep you posted
Posted 2/11/2009 10:54 PM (GMT 0)
And please try to keep hanging in there, Survivor. I know it's hard.

Congratulate yourself for each day you get through. You are surviving, and you should feel proud of yourself for that.
Posted 2/11/2009 10:56 PM (GMT 0)
:(.... *Hugs*
Posted 2/12/2009 12:39 AM (GMT 0)
nono My father taught me a British army saying, "No-one is ever entirely useless, they can always serve as a terrible example to others". I discovered a new and rather different twist on that today Survivor, thanks to you.
I was having a lousy day, yet again just treading water, time seems to be just wasting away with nothing to show for it...and then I read your reply to me, and thought with great surprise and pleasure, "Well well, nice to know I am getting something right !" yeah
It gave me a real kick to know I was being of use to someone, and that all those bad times in the past had produced something of worth. So YOU helped ME today. How's that ! smilewinkgrin turn yeah
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