HealingWell
Search Close Search
☰

a question about pain relief....

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/28/2011 4:01 AM (GMT 0)
Hi all...

Here is a question that I am afraid to ask my doctor. I am wondering how you all have handled it, if you have and how is the proper way to approach it if you ever do?


I have been suffering with this for a few years. I have had horrible stomach problems, with constipation, diarr, painful gas pains, blood with bm, mucus etc.... I have suffered in "silence" for a long time, I have dealt with the pain and cramps alone and now I am wondering if it is ok to ask for something to help me through the worst of the times. Sometimes I am doubled over. It has interrupted my life. I have a husband and three children and I hate having to sit on the sidelines.....I do not see that anyone ever talks about pain relief. Am I expected to live with this for the rest of my life and just deal with it in silence? I am finding that the prevention meds are helping somewhat, but what about when they don't? Am I just being a baby. Regular Tylenol does not help. I have migraines and I suffer through them, because I only get one or two a year. But I know that if they get worse I can get help. I am just wondering if there is some help for this?
Posted 1/28/2011 4:24 AM (GMT 0)
There are some members who use various pain meds, I hope they chime in. I've never been prescribed medication for pain but I have suffered immensely from debilitating cramping when I was flared up. I have seen people mention bentyl being a wonderful reliever for UC cramping. My GI believes in treating the inflammation instead of the pain. I would hope that if we couldn't control the inflammation she would be open to prescribing something for the pain but thankfully that hasn't happened to me yet. I don't think there is anything wrong with pushing for a pain reliever if you're uncomfortable. I do think you need to seek a treatment that keeps you from experiencing so much pain. what are you currently taking?

I have to take medication for my migraines, they are killer! I get one or two every month from hormones.
Posted 1/28/2011 4:31 AM (GMT 0)
hmmm, my signature is not showing???? Will try again.
Posted 1/28/2011 4:33 AM (GMT 0)
I am just asking because I am coming to understand that what I have been suffering in silence with for years is a chronic condition that I will have to deal with for the rest of my life. I just wonder if I am a baby about the pain, or if others have major discomfort also.
Posted 1/28/2011 4:42 AM (GMT 0)
Oh god no, you're not a baby! I have been practically in tears with the cramps.

How is entocort working for you? I've heard mixed reviews but it sounds like the side effects are much less with entocort. I wish I was offered that as an option over prednisone.

Does bentyl help with your pain?
Posted 1/28/2011 4:50 AM (GMT 0)
so far ok, just started and do not know what is the drug or me yet. This is all still so new to me. I just want to feel empowered about this all. I have felt so "invisible" re: my stomach "aches" for so long. I also do not want to become my condition. If pain relief is not a feasable(sp) option for some reason I would like to hear about it. And re: Bentyl, I am not sure. Some of my symptoms are better, but some are not....but all in all feeling better.
Posted 1/28/2011 5:12 AM (GMT 0)
For about 4 years my husband was able to cope with the UC under the care of a Pain Management Specialist. This began as a direct result of being hospitalized with a terrible flare and the medications he was released with by the hospital. (fentanyl patch and morphine sulfate) Unfortunately for him as time went on and various UC medications were tried to no avail and the last resort was Remicade which failed he was having breakthrough pain and needed an increase in his medications.

In June of last year after an honest talk with his local GI she made him realize that he needed to seriously consider surgery as he had exhausted his options basically and even though he was finding a way to cope with the UC with the pain meds all he was doing was masking the situation and honestly it was not a good situation anyway.

If in your case this would be to help temporarily while trying to cope with pain and discomfort while trying to find the right medication or whatever to help get the UC under some kind of control go for it. It does slow things down, can contribute to constipation but I truly understand needing the relief too.

Random urine testing is done in accord with Fed guidelines the Dr was required to do. Hubby had to sign a form stating that this Dr would be the ONLY Dr to prescribe pain medication and he would not seek pain medications from any other Dr. Appts were every month as the stronger drugs (morphine sulfate (later changed to oxycodone), fentanyl patch, oxycodone, gaba pentine a nerve blocker used in conjunction with the oxycodone were the meds he was on required an original script with Dr's signature and 30 days supply on the oxy and fentanyl.

Good Luck
Posted 1/28/2011 5:21 AM (GMT 0)
thank you, how horrible for your husband. I AM only talking about asking for something to take occasionally when I am having a really bad time. I have dealt with this for years and would love to have some relief available if I felt I really needed it. As I said, I have dealt with my migraines, never asking for any prescription, but I know that if they did become more frequent I could get some relief. I also wondered if pain relief was not given for this because it would interfere some how. Also, how do you all deal with the painful joints? I had been getting PT prior to my diagnosis.

Post Edited (cmfiebke) : 1/27/2011 10:38:04 PM (GMT-7)

Posted 1/28/2011 3:26 PM (GMT 0)
When I was at the worst of my flare my doctor gave me some vicodin to see if it helped. It didn't really. I have heard some people have good results using tramadol for pain but I haven't tried it. And I don't think you should be suffering in silence! If you have been feeling this way for 3 years, your treatment IMHO is seriously lacking. ;o(
Posted 1/28/2011 4:58 PM (GMT 0)
I have used oxycodone to good effect for UC pain, thankfully I have not needed any for the last several months, but still have some if I need it.
Posted 1/28/2011 6:07 PM (GMT 0)
I had shingles a year ago and was prescribed percocet and neurontin for the pain. It was amazing as it made all the pain in my colon go away and also slowed everything down which became the first day since being diagnosed that I didn't go to the bathroom at least three times in the same day.

The bad news was that after I finished the percocet (which was 1 week), my colon went into overdrive and basically made up for the time off. But how nice a week it was!

Of course, the shingles absolutely sucked!!! And maybe the pain associated with that just took my mind off of my colon?

 

Posted 1/31/2011 6:57 AM (GMT 0)
Thank you all! Had a really bad weekend. I have thought about going to the ER but I have a job interview on Tues. I just want to feel well enough to get through the day. I am handling the "going to the bathroom" part, but the discomfort and no sleep is getting to me.
Posted 1/31/2011 6:01 PM (GMT 0)
Vicodin is 2 for 1.   I had terrible headaches from a UC-related stroke and the vicodin was more helpful for controlling UC than it was for the headaches.   I could prove it over and over again.  Stop the vicodin and what things worsen, crank the vicodin and everything would go back to normal.  If I ever screw up the start of a flare again I will ask for 30 days of vicodin.
Posted 2/3/2011 3:05 AM (GMT 0)
Trying Bentyl again, I notice a minor difference....should it be helping me more?? Do some meds not work for some people? Interview has been rescheduled now to next Wednesday because of the snow storms(we were hit hard here in MI). I hate to call and complain, but nothing seems to be helping...
Posted 2/3/2011 3:34 AM (GMT 0)
I do not understand your view regarding not asking your doctor something. I went in armed to the teeth for my Dr Visit today. On the pain issue he totally shut me down when I said vicodin is a last resort, before the hospital booking that I know will turn me around. We agreed to drop it when he said 'well we are not even anywhere near that now your doing great'. I feel the door is somewhat ajar on the topic - it is not totally dead yet. I do not want it for pain but he could not justify it in his mind the way my other doctors did when this was allowing me to remain on blood thinners without bleeding.

I made good headway on every other issue.

I can tell you my last flare was a whole new dimension in pain and you might give Librax and Hyocyamine a try both are cheap and effective for me - I would choose Librax first. If I am at that stage you can bet immodium is in there too. When those saved me I was in so much pain that I could not ride my motorcycle nor turn my truck without pain. I never thought to get relief from the pain, I was bleeding too much and that was the focus of my concern. I do not think your being a baby and who cares anyway - if something bothers you pitch a *itch about it. The pain and the bleeding went away with librax and sulfasalazine within hours after a full month.

Good luck
Posted 2/3/2011 4:21 AM (GMT 0)
My wife used to get debilitating migraines. After about 15 years of telling different doctors the same thing, a nurse practitioner said, "I'm going to send you to have your gall bladder looked at."   Turned out she had gall stones. The migraines were her passing a gall stone. Her gall bladder was so loaded with stones, the doc took it out. Laparoscopic, in and out thing. Took her in at 6 AM, and took her home about 6 PM.   Migraines gone.  
Posted 2/3/2011 4:53 AM (GMT 0)
@aguywithuc I worked for a neurosurgeon for years, I then worked for an oncologist. Having worked for both doctors, I have become somewhat prejudiced re: patients wanting and needing pain relief. I want to know if others have pain issues and how they handle it, if it is something that most UC patients learn to live with, or if it is something that can be dealt with, and how. I know I am rambling, sorry. I also do not want to end up in the ER for the pain if I can help it, I really want this job and I do not want to miss my chance at this interview. I am trying some of the advice I am getting here, and I am hoping that asking for a script will be my last resort. But I also want to know if it is better to get relief and get on with life and healing, or if these meds are NOT good for a patient with UC. I hate NOT knowing, and I HATE going into a drs office with out an idea of what I should be expect or what questions I should be asking. I know, I know I am making no sense...lol thanks for letting me vent and ask my silly questions
Posted 2/3/2011 1:42 PM (GMT 0)
There is such conflicting feelings about this and how one Dr feels as opposed to another.

When hubby landed in the hospital for 5 1/2 days with a terrible flare he was released with a Fentanyl Patch (50mcgs) and a small morphine sulfate pill (3 times daily). Previous to that his local GI did prescribe a hydrocodone 5/325 if I recall correctly which did nothing.

The hospital had to (or felt they had to) release him on some kind of pain management program which we followed up under the care of a pain management specialist.

In addition to starting imuran this kept things on an even keel for awhile. Fast forward to 5 years later...yes the pain meds helped for quite awhile but the UC would not go into remission along with trying Remicade and the pain meds started to not work as well.

Surgery 7 weeks ago as it was time to deal with this properly and stop masking the pain and get a life back hubby decided.

However for a shorter term situation while trying various meds to get it under control I just can't see making a person somehow "suck it up" and deal with the pain and learn to somehow adapt to it. We don't let our pets suffer the way we sometimes make us suffer.

My husband has a very high tolerance for pain but this just beat him up and he got to the point back then he needed something as it was kind of driving him crazy. Hope those of you suffering can find a happy medium to try to help you cope. This is a horrible way to live and suffering in silence is not good long term.
Posted 2/3/2011 2:38 PM (GMT 0)
When I get severe cramping, I take 20mgs of Bentyl up to three times a day. It doesn't always work like it should but for the most part it helps. My GI also wanted to prescribe me Ultram for the pain since they took Darvocet off the market (my normal pain med) but unfortunately I can't use it because I am allergic to it. Another thing to look into is Tylonel #3. Most doctors, who know you are not a user, will prescribe pain meds. I hated to have to ask at first too. I thought they would accuse me of being addicted when in reality, a bottle of 30 pain pills can last me nearly a year.
Posted 2/3/2011 3:04 PM (GMT 0)

cmfiebke said...
But I also want to know if it is better to get relief and get on with life and healing, or if these meds are NOT good for a patient with UC. I hate NOT knowing, and I HATE going into a drs office with out an idea of what I should be expect or what questions I should be asking.

I got valium once when I was in a sudden child custody dispute and told the Doctor she needed to give me something to calm me down - it was granted.

I only got Vicodin by having a stroke. The Neurologist gave me Topomax which is still sitting in the kitchen unopened. I flat told him I am not going to take something that will aggravate memory recall when that is my primary symptom. He wrote in his notes to the GP that I was using it less and less for painful headaches and more for its ability to make UC go away.

The GP was busy and another Dr made me sign some contract about testing me for abuse sourcing vicodin somewhere else bla bla bla. I told her 'look stop the blood thinner and I will never ask for vicodin again - but if your going to continue giving a UC patient something that prevents healing from internal bleeding them you need to give me vicodin because it makes UC go away in high doses'. I also told her I stopped for a week and felt no 'withdrawal'. The GP gave me more vicodin but at vastly reduced quantities in which it was not effective, had the same conversation with him. I went back after MRI/MRV confirmed stroke was 100% gone and said I wanted off BOTH vicodin and blood thinner. We agreed to chop BT by 67% for last 2 months - no vicodin. So when I saw the GI yesterday I tried to bring him back to where we were last summer - where nothing including 100mg prednisone was doing anything for me. He said there is no conceptual reason for treating with vicodin over immodium. He is wrong ( in my case my body ) but what I was hearing is that he felt he would be going out on a limb, that it is difficult to justify writing a script.

So I would attack the source of pain with mentioned bentyl, librax, I use mebeverine too. Then I would also try to get some sort of pain relief but I would expect to be shot down.
Posted 2/3/2011 6:49 PM (GMT 0)
I think you need to find a new doctor if you have been suffering like this for 3 years!! That is not okay! And, no, you are NOT being a baby! When I first got UC I had such horrible pain that I thought I was going to die. I was sleeping on the bathroom floor, having D 20-25 times a day and throughout the night and I could barely walk because of debilitating cramps. I think you need to make an appt. with your GI (of find a new one) and tell him or her exactly what you're going through.

I've never been on pain meds for my UC, but was on pain meds when I got a tonsillectomy a few years ago...my UC was great that week, not sure if there is a correlation or not.
Posted 2/4/2011 2:11 AM (GMT 0)
Thank you all for being so open about this....I know that everyone is different, and it is just so comforting to just hear about how much it is hurting others also.....weird and twisted, but it really makes me feel better about feeling so awful, it also helps me feel more confidant about the reality of my own discomfort. It has been hard to be the "one who always has a stomach ache"....people seem to think it is just an excuse or I feel like I am whining. I have felt like I have had to "suck it up" for so long, it is hard to really accept that it is ok to ask for help. And that is what I have needed, help to be able to ask for help....Thank you all, really...
Posted 2/4/2011 1:02 PM (GMT 0)
I know what you're talking about CM. For years, I felt alone and that I had to fight this alone. So when I found HW, it gave me a whole new sense of freedom and comfort.
✚ New Topic ✚ Reply