Crohns Resolution for 2008 / Alt Pain Med ?

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Blue Velvyt
Regular Member

Date Joined Sep 2006
Total Posts : 194
   Posted 1/3/2008 8:34 AM (GMT -6)   
Hello All,
I take the liberty of pretending like I know you all well. I may not know your names well, but I visit this forum allot, lurking and reading. Lately I have been sicker then ever.
and it made me think, I thought of all the comfort I have gotten from this forum.
When my doctors have failed me on occasion I have found answers here and even when my doctor succeeds I still check here for others opinions and stories.
Some of your stories are heart-wrenching, sometimes my sympathy runs so deep I weep, not really tears of sadness, tears of relation, shared pain that only those with similar diseases could know.
I thought with this year I would consider my disease a tool, one that should be used just as everyone else does on this forum, to help answer others questions when and where you can.
I wish I were better at writing things, emails, forums etc, but I'm going to try my best this year.
This is only my 3rd year with this illness (Crohn's) , funny, when I think of how long some of you have had this disease I physically cringe, perhaps funny is not the right word.
I have gotten worse over the 3 years, I am not sure if I should be happy or sad that I have not yet had a surgery to remove the offending intestines / bowels, seeing as my doctors are doing everything to avoid that, hey I'm right there with them, I am not looking forward to another surgery.
I am like so many of you, have done the pentassa, the entrocort, the remicade, the b12 injections, the prescription vitamins, ( meds to long to list, starting humira soon) 20 or so ambulance runs over the last few years, everything from a form of vertigo which actually had me passing out, to starvation on a fast scale, 20 pounds in a month, gone like that!
Hell I know you have all been there done that, I work very hard to not let it bother me (I fail here alot) and to not let my family or friends see it bothering me, that doesn't mean I don't complain about pain, I just don't harp on it as much as I did the first couple years, wonder if there some weird kind of disease wisdom that sick people get over time....
My health situation may or may not sound weird to you guys, or maybe you know all about this, but...
I broke a disc in my back at work 3 years ago, then months later I got really stomach sick, they found ulcers and stomach ling deterioration, the kind that instantly turn your diet to mush, I gotta tell ya the "soft food" diet is lame....
anyway, I got sicker and long story short they found Crohns, somehow, multiple doctors, all specialists in their field agreed my injury at work to my back injured my nervous system enough to fry my stomach and intestines triggering genetic markers in my dna to set off a family trait for Crohns, seriously man, who did my union lawyers hire? CSI?
Look at that whichever way ya can or want, I cant say I understand what the doctors are talking about ( but hey I'm not a doctor), but we are talking about multiple lawyers working for a very large company (probably not best to say which one) deposing doctors multiple times and they all stood by that story, so as crazy as it sounds my work now pays any medical bills related to this illness for the rest of my life, and of course my back....
So anyway, as I'm sure you will all understand, I have felt some large frustration with kaiser over my pain management, I am intolerant to any narcotics, I have tried them all my stomach absolutely can not handle them. The only alternative kasier offers is a pain management class (not gonna argue that, cant hurt) or acupuncture (that probably cant hurt either).
but, what if you are suffering from mass vitamin deficiencies, what if you are nauseas all day, what if for 6 hours of the day you are wracked with abdominal pain and your doctors keep scanning you and telling you its "just" inflammation in your bloodstream (verified). What do you do about your pain then when there is nothing but tylenol in your house, while your waiting the month it takes to flush the remicade(or close to it) and start the humira.
What do you guys do? Anyone like me who is intolerant to narcotics? I'm curious I did a search for Medical Marijuana on this forum and I did'nt find anything about it. I checked the state laws here in California and discovered it's legal.
Is this a topic that can be discussed here? or is it taboo perhaps. Thought it wise to ask first before discussing it further.
I summed up about two years worth of illness in a few paragraphs, I hope it was not to long, I am always hopeful, but the kaiser system of healing here is slow at best and I often feel powerless to improve it's speed while I suffer, I often say " I eat pain", that is how I feel about food, and my diet is as close to pristine as it gets, it is not for lack or trying to manage this disease, belive me....
Not giving up by any means...
Anyway I shall continue at a later date perhaps, I have jabbered on enough here :)
Feel free to ask any questions if ya like about me or anything in general and I will be glad to answer them, I'm homebound now and could use the distraction....
Thank god I have roommates :)

Regular Member

Date Joined Oct 2007
Total Posts : 82
   Posted 1/3/2008 8:59 AM (GMT -6)   

Are you taking any anti-nausea medication or GERD medication (like Nexium, or Reglin or Compazin or Phenergrin?)   It seems like the doctors should be doing more to control your nausea.   If they could get that under control, then maybe you could handle pain medications. 

Also, what kind of pain meds have you tried?  

I loved your post, by the way.  Very well written and touching.  I'm so sorry your disease is out of control right now.

DX: mild to moderate Crohn's for 34 years
Additional benefits: chronic anemia, B12 deficient, peripheral neuropathy, facial mylagsia, joint pain, underactive thyriod
Current meds: Colozal, Nexium, Entocort, Flagyl, steriod cream, monthly B12 injections, Neurontin, Synthroid, Effexor ER, pain meds as needed

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 1/3/2008 10:07 AM (GMT -6)   
First off, welcome to Healingwell. I think in order for you to get relief from your pain, your doctor needs to get your Crohns inflammmation under control. I agree with Clcaj you should be asking your docs for anti nausea meds and some Gerd medication as was mentioned. I also have Kaiser, but unlike you I have gotten pretty good care from them. My family doc prescribes my pain meds and my GI treats my Crohns. I also take Zofran 8 mg every morning first thing when I wake up and have to take Phenergan every night at bedtime. So I can really relate to the nausea. I also take Prilosec and Asacol. Another thought is have you modified your diet at all. I eat a low residue diet ALL the time and probably will continue this diet for the rest of my life. I try to eat a little something every 2 hours or so. Forgive me if you said so, but have you tried Prednisone. While I hate the side effects it is a great drug to get the inflammation under control quickly. Sure hope you get feeling better soon.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Blue Velvyt
Regular Member

Date Joined Sep 2006
Total Posts : 194
   Posted 1/3/2008 7:28 PM (GMT -6)   
I have taken Phenegren, I had a reverse reaction to it (durring pancreatitas), caused by clogged bile ducts, another gift related to Crohns so the doctors say,  had a surgery to cut them open, widen them and clean them out.
The phenegren burned the veins in both arms, my arms blew up like the hulk, and the veins all collapsed, the hospital called it "burning a vein" I believe, was 2 years back.
Veins seem to be getting better this year, Im a tad easier to stick this year then previous years.
I am on zantac and karafate (tried reglen, no luck), havent tried any other nausea drugs, the karafate (this stuff works for stomach upset) does work, but continual use of it has another side effect, it causes a different type of pain with prolonged use, almost like food isnt being digested at all.
As for pain meds, I tried percocet, vicodin, morphine, dilaudid, phentonyl (the patch), and a couple more I cant remember now, I have tried variations in dosage for each, that vomitting is instantaneous with in an hour of taking any narcotics so far.
I was on prednisone for the first few years, and they changed it to entrocort, then I got off that 2 months back, coincidentaly my health has declined rapidly, but I started remicade right when I went off the entrocort, so a tad confused on what may be going on now.
This may be just one of those cases where you come off one med (remicade, didnt work, 3 infusions total) and move to another (humira) as the time delay in between usualy means one didnt work (so it is getting worse) while you are hoping for the next one to work.
As for my doctors, I cant complain about the individual doctors themselves, they try hard, kaisers system just isnt condusive to allowing doctors alot of time with each patient, although mine does take my condition seriously, its not the doctors, its the kaiser system which is a little flawed in terms of how little time they allow doctors with their patients :)
My diet has varied over the years, I have stuck to the doctors suggestions pretty much throughout.
I have reduced the fat intake as much as possible, I eat the softest non-stomach irratating things I can.
I avoid spices, red sauces, fat, sugar, NO meat at all, water or juice only (organic), I'm currently trying gluten free food.
Right now for the most part my Doctor has me on a "soft food" diet
This means mostly pasta, with no sauce, I use margarine and add some mushed up veggies.
I also have 1 organic yogurt.
Currently I eat about 8 ounces of food a day. The pain and nausea when I wake up lasts for anywhere between 1 hour and 3 or 4 hours, not to mention the lovely all day "I'm sick" feeling.
The current inflamation in my blood stream is presenting a problem, mostly them stopping it, it may be responsible for lighting up my spinal cord in pain ( so my reumatologist says) they are going to scan my body for this ( some kind of bone scan) these test usualy are negative. (adding to the frustration)
I have and continue to have mass's growing and reducing in my body, some in my neck and some under my armpits, they took a saliva gland from my neck and biopsied it, no cancer they said, then they just blew it off as Crohns swelling.
Im hoping the figure out what the deal is with the weird swelling mass's.
Well, it aint death's door, but I gotta concur on the "this sucks" factor of being sick.
I cant complain really about life, I have a great woman beside me, 14 years, without her love holding me up, I dont know where I would be, I physicaly shutter at the thought of not having her by my side (hell I would have shuttered at that thought if I was healthy)
I do not feel insane by a long shot, but I have to admit that human emotions have their own way of playing out without my permission, not sure if that makes to much sense, but a good example is crying at tv shows or comercials.
I dont feel sad, yet the tears flow, your stories make me cry, yet still I feel strong, I do not know why that is happening, if I had to guess, I would say it is based on some form of comisseration perhaps, what do I know right :)
Geez you get long winded when your inbetween treatments and have no where to go.....
I am vary curious if anyone is using acupuncture or marjuanna as both here in california are things my doctors will allow me to try...(kaiser no deal, independent doctors more open)
Anyone having success with either?
On a side note, I caught a kid (maybe high school age) trying to break into my house (3 am) this week and chased him off (meaning I yelled out the door that I had called the cops and he better run), he was in our backyard testing our doornobs to the house, scary.
Hey at least it promted me to go out and talk to the neighbors eh :)
anyway, I forgot to say in my last post, Thank you all for posting, for reading, for just "being" there in any form, I feel the compassion in every post.

Post Edited (Blue Velvyt) : 1/3/2008 5:35:19 PM (GMT-7)

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 1/3/2008 7:50 PM (GMT -6)   

Blue Velvyt

Welcome to Healing Well and the CD Forum.  Thank you for sharing with us and I agree with you, reading the stories of the members brings all kinds of emotions out in each of us.

People with Crohn's have to be very special people who face huge challenges daily.  They are to be respected and admired for their tenacity.

Again a Warm Welcome.


Co-Moderator Anxiety ~ Panic Disorders
Co-Moderator Crohn's Disease Forum
*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression, GERD, Osteoarthritis
*Wife of a Crohnie*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

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