Good morning SheryIN and welcome to Healing Well. I am so sorry you have to be here but very glad that you found us. I think you will find us to be one the very best forums around. You know if I didn't know better, I would have said that was me writing your post. Boy, have I ever been there and done that. You see, I too have crohns and totally understand the roller coaster you are riding and wanting it to stop so bad so you can get off. I too have done the Remicade route and it just lost its punch for me. I did have to go back on it for a lovely fistula and ended with Remicade induced Lupus. Well, now I am on Humira and it is the very same way so I am now on meds for Lupus. I started Humira Jan of this year and I feel its probably worked the best of any of the limited meds I have been able to try. The problem I have is getting infections and having to stop the Humira immediately. I have probably been off of it more than on it sad but true. Last week I was dx'd w/Psoriasis and understand they use Humira for it. I was given my dx for UC in June of 05 so, yep I truly understand where you are at.
Now you have reached a point with your pain that the pump has been recommended. I have a pump and I absolutely love it it. Now I did not always feel that way. The pump is great because you are not sitting around clock watching, waiting on that next dose of meds, waiting on it to kick in, none of that stuff. Its a constant steady slow release of medication. There is a saying among pumpsters that is so very true. A dr can either make your pump a success or he can make it a failure. By that it means the dr must be very educated in pumps and in the medications that is used in the pumps. You must have both of these in a dr, otherwise the patient gets screwed. I got screwed. My PM dr that recommended the pump to me did not have near the knowledge he needed to be handling pump patients and there was 45 of us. You should always have orals pain meds for BT pain because none of us will ever be pain free. Some drs disagree with this, a good one won't. You should also be allowed increases in the pump as needed because you will over time become tolerant to the dosage on your setting. It may take awhile but the pain will return and an increase should be given. I have a 4 drug cocktail in my pump and Dilaudud is the pain med used in it. It is a very old drug that works well in pumps and has the least side effects. My former PM dr had my concentration level at 15mg and I received 5mg in 24 hours. Well, at first this worked then it quit qorking. When I asked for an increase he said no. He said you are on the strongest pain medication there is. I was, but I was also on a very, low, low dose too. But that is not what he led me to believe. He had me believing I was maxed out on my dose. I was walking hunched over, I could not stand up straight, it was pathetic. I was no better off than when I first started the pump route. If I needed to go somewhere or even attempt to do something, I was unable to do much of anything w/o paying for it severely in the pain dept.
Then he decided to stop practicing PM and go back into anesthesiology. Boy, was that a blessing in disguise. He referred his 45 pump patients to a neurosurgeon here in Ft. Worth. The day I walked into her office she was shocked at the shape I was in. Before she realized it she blurted out, your freaking pain has been so under-treated and you have have been under-treated as a patient, but I can help you. She wanted to know how I had managed the pain, I said I have become use to the pain thats all. I told her the dr said I was maxed out on my pump and no more increases had been allowed. She informed me I had a very long, long way to go before being maxed out. I was due a refill on my pump, I went from 15mg concentration dose to 37.5mg and I receive 8 mg in 24 hrs. I also have oral Dilaudid 4mg and I can take 2 at a time if needed. Now, I am able to live again like a human, I can play with my 4 yr old grandson. For the first time in 7 yrs I have been able to mow my own yard. Yard work was my therapy when I worked,lol. I could be stressed or in a bad mood and go out and do my yard work to get rid of it. It was good therapy for me. I wil tell you, once you have a pump put in, it is very hard to find another pump dr willing to take you on as a patient. Personally, I think its liability issues. Back when my pump was put in my dr did not bother to tell me this, among other things.
I need to stop here because the length of this post has got out of hand,lol. But there is alot you need to know before hand on these pumps. If you have any questions please ask me, if I can answer it I will. If you want to provide me with an email address to answer questions great, that way we don't take up HW's space. Take care and please keep posting.
Moderator Chronic Pain
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.