Tina. so enjoyed reading your post. I think I read somewhere you were considering the pump implant after the first of the year. I think thats a great idea. Start the new year off with a new life beginning for you and the family. I do not want to appear pushy on the pump by no means. Its just that I know after a person has tried every avenue out there to no avail and things are not getting any better its time for a change.
I have crohns disease and let me tell you its a roller coaster ride having severe crohns. One thing its taught me is to grasp hold of any kind of possible avenue to attempt remission. Some can have crohns and have one mild flare up a yr and be done with, or have some problems but nothing severe enough to warrant doing anything about which is not the correct approach. Crohns is a silent disease in terms of while you may think you are doing ok, the crohns is destroying yours bowels or any other place you may have it. I was dx'd after an emergency resection while on vacation in Mexico. I had developed a complete blockage and abscess and wanted to die while curled in that ball of pain. Onece they located a surgeon he thought I had appendicitis so he took my appendix out only to find them fine. He had the sense to to go further, he opened me up lower and found a mess. My gi said the surgeon saved my life because if the bowel had perforated I would have died. All that poison would have leaked out and destroyed everything, so God and my angels were taking care of me. No one has lived until they have an emergency surgery in Mexico,lol. We were 90 miles out of Cancun in a villa we had rented and I was taken by ambulance to Cancun. No they don't speak English, the hospital was an old 3 story hotel converted into a hospital. No nice American speaking real hospital in Cancun. My IV pole was missing wheels, so rusty they had to carry it. Still used cotton balls soaked in alcohol, no disposable anything, no call button for a nurse, very very primitive. But, I had the best care ever. I never one time had to ask for anything including pain medication. They kept me comfortable, clean, oh I had full baths in the bed including hair washing. The nurses looked all of 18, very very proud of their vocation and took it very serious. The drs were the same way. My surgeon & admitting dr came 2 times a day to see me. American drs & nurses should have to do one yr stints in Mexico before getting their degrees. Those people could teach them some lessons in many areas. Those people took such pride in their work. The 1st 3 days I was the only patient there,lol. Then an elderly came in.
I went into complete denial after the crohns surgery until I cratered 18 months later and it was not pretty lets say. At the same time the chronic pain sneaked back in, in the middle of all of this. I just became too overwhelmed with all of it. Most of the crohns medication is steroids and which I cannot take, so I had to find a gi who was not afraid to take me on as a patient, I went thru 3 before the one I have now. He is a blessing. I found out very quickly even living in the Dallas/Ft. Worth area where there are more drs available than the law ought allow.lol. THe quote top gi's are not uptodate on the new meds available for crohns because they are lazy. They do not want to take the risk of dealing with these new drugs that have severe side effects from death to cancer.. My dr stays up on it all. I have no immune system because of the crohns drugs but at least I am not pooping 25 times a day and living in my bathroom, or having to wear diapers as before. Sometimes I do but nothing like before. I had developed a nasty fistula this year that came out and opened up on my old hysterectomy scar. Oh, I had no clue except I kept smelling this foul odor and no shower was taking it away,lol. I fnally got to investigaing and there was this small hole with this crap draining and the whole was getting bigger. So, my gi did his thing. I had to start back on Remicade infusions every 4 weeks. Remicade is one of the newer drugs for crohns. Many people have been steroid dependant and were actually able to get off the steroids totaly for the first time ever. But, Remicade comes with big bad potential side effects including death & cancer. I can't look at medication in those terms I have to look at what may be my shot at feeling better and getting into remission. If I can't get there at least have some control of it. You would be amazed at the people that refuse the crohns meds because of the possible side effects. Steroids are the very worst of all. But yet they will eat those pills and destroy their bones and still besick. I guess this is why I am proactive about things that works. I am sorry, I know you didn't want to read this mess, but I am trying to explain why I am always willing to talk about something that may help another person. To me dealing with crohns is no different than chronic pain, you have to be open minded when it comes to medications or even now devices, lol. I can't worry about what may happen next week or next month cause I could get run over by a car tomorrow. I live my life around that motto as well.
I am going to be trying a new crohns drug just approved by the FDA called Cimzia. Hopefully I will start it this month. Its an injectible drug done at the drs office. I read about the trials and it sounds so promising. I try not to get too excited in the event I cannot tolerate it, like so many meds. We decided to try it because Remicade infusions entail a trip to the hospital sitting in an easy chair 4 hrs while the drug is infusing. Thanks goodness I have a port in my chest because it destroyed what veins I had left yrs ago. In 04 I had to have the port put in. I am now starting to get some side effects from the Remicade which put me in bed for 3-4 days including running a fever. Cimzia has the horrible potential side effects but again, I don't let that make my choice. I look at feeling better, being able to eat solid foods, not liquids, be able eat in a restaurant and not worry about how far it is from the house and back. My surgery left me w/chronic diarhea and my gi had hoped the pain meds would slow it down-no it didn't. He even sent me to a gi in Dallas that wrote the book on diarhea and he had no options for me,lol. Now thats bad, lol.
Hope you have a lpd. My belly is rumbling so I am off for now. Lots of hugs coming your way. Susie