I havent been on much since my surgery in january. It was my 4th CD surgery since February 2007 it was also the 7th hospital stay I had in 12 months. This last surgery I had was to do a bowel resection to rid me of the enterocutaneous fistula and removed the partial obstructions caused by adhesions. I am now left with the last 1/4 of my large intestine and in total I think about 12 inches or so of my ileum is now gone. I had complications with this surgery too just like the last 3. I started out well and after having 2 bms they started me on food even though I had not yet passed gas. Well the surgery was january 11 and 1 week later I was still hardly eating and had not had a BM in 3 days so in went the NG tube for 5 days. I had Ileus again where the bowels had yet to wake up even tho somehow I had passed some stool early on. I was going to be discharged January 29 but on the 28th I showed the residents that a warm red area on the upper area of the incision was swollen and painful...they said oh must just be a reaction tot he staples (I had staples til the 30th and they were placed the 11th). THey just let it sit like that and the next morning when my surgeon came in to see me I showed him so he opened the area and I had a hematoma so he drained it with placing a qtio in it and putting gauze in it.
He kept me overnight just to make sure nothing further developed he had the nurses changing the bandage 2 times a day using NuGauze it is a sterile wicking thing that helps heal. The next AM the residents did it ...when the nurse did it it was a sterile procedure...when the docs did it they used non sterile gloves, rather than using sterile forcepts (tweezers) they used their fingers to remove the nugauze from the bottle ...yes they had gloves on but just the gloves that are in the box attached to the wall (exam non sterile). I went home on the 30th which was a wednesday and Superbowl Sunday not only did our family have to euthanize my dog (she was my 16th birthday gift from my parents and grandparents but she lived with my folks now) I was getting stomach pain again near the incision I had been doing the dressing changes as instructed and the painful area was 3" below the hematoma area. My doc doesnt have office hours on Mondays so I saw 1 of his assoc the following day (in the am I pulled off some of the steristrips since the pain was bad there was heat etc and it resembled the wound infection s I have had in the pst few surgeries. It had formed like a white head pimple so I was able to scratch the area to let some of it drain. When I went to the doc he used lidocaine and numbed my belly and cut the area open a bit more to allow it to drain better...it was oozing so much that I had to clean the area from throwing out the bandage to stepping in the shower since it would drain right down. Then the wed of that week I went back a new area had an issue just like monday but there was no way for me to even get it to drain and I wasnt about to stick anything into it. Well this time I saw my doc and the following week he was going on vacation so after cutting another area open this time he connected the new area to the hematoma area since they were close but he still left the other area separate. Seems as though the hematoma formed a track down and got it infected.
Well since that occured my last HUmira injection was January 4th and the week prior I was unable to use it since I was sick...that postponed my surgery it was going to be january 4th not 11th. I began having pain in the area of the anastamosis (sp?) as well as joint pain in my right ankle. I saw my PCP February 27 and he felt as though the infection was gone (the bottom part was fully healed and the top area was very timy and not oozing pus I brought a gauze that was on it for 24hrs in a baggie so he could see...gives a better idea to the doc).
My GI gave me the okay to start back up on Humira when it became better but the pcp had me call the GI just to make sure it was okay since there was still open skin even tho there was no pus. I was given the okay but I am on the traditional dose one every other week where as before Sx I was using 1 a week. Initially I started it for my joints since thru the years my joints have been a bigger problem then my gut. I had to call there today since this is the week I dont use it and I would have had my period this week but it decided not to come (yet anyway) ...and there is no way I am pregnant...hubby is still afraid to undo stuff still sewn together inside. I lost a lot of weight this time went to 85 in the hospital and with the NG I couldnt take my birth control so I had my period 1 week as I should have, started the pills, was pulled off the pills so 1 week no period then a week with it, took pills again but where I would have been in the pack had I not had to stop, then got it as I should have ...my GI was surprised since with weight loss it can stop. So now this time I got all the crud that goes along with it...pms, increased swelling in my joints, migraines...but no blood but I got the cramps.
I think its the stress of it all and starting back up on humira...when on remicade I use to miss about 2 periods a year sticking to my meds at all times.
I applied for social security disability on Dec 10, 2007. I got some papers back, then they sent me more to fill out and when I saw my pcp in January he said fill them out (I was going to ask him about some of the questions as to how to answer them) he told me get a lawyer but fill them out and send them in and they had to be back in within a cpl days of me getting them so I had to send and was unable to make copies.
I got the name of a lawyer from my aunt so I was going to call him then decided to wait til after Sx, then after I got home I was putting it off due to how I felt I still from time to time have accidents and had more trips to the bathroom soon after my surgery than now....well that depends on the day. So I saw the lawyer for the 1st time last Friday (2-29-08) and he was going on vacation after work that day for a week. I still had to obtain addresses from docs that I saw whren I was living in CA and docs I saw whrn I was a child (for crohn's, arthritis, asthma, allergies and migraines). I was still working on trying to get 2 names of docs I use to see one in the 80s and the other in the late 90s. I called my docs office today since my joint pain is so bad I cannot put weight on my right leg without wearing a brace. I answered the phone thinking it was him but it wasnt. I was told by SSDI that it takes 5-6 months before you get your answer and most people told me get a lawyer...and even he told me I may still get denied the 1st and even 2nd time with him there too just because of the system.
To my surprise it was SSDI calling telling me I was approved...kinda upset that I saw the lawyer 6 days ago and signed the paperwork about how the payment goes and since he is on vacation I called his secretary to inform her that I got approved and gave her the name of the person I spoke with. I also mentioned to her that I still hadn't even gotten all the docs names and addresses to them yet and asked about how the payment would go since the law is either 1/4 of the backpay or $5300 whichever is less. obviosly mine would be the 1/4 but I hope he is generous and will have me pay some since I did meet with him etc but I got approved before he even got his secretary to send out forms for medical records. If he is as good as my aunt says hopefully he wont take the 1/4 but I do have a signed legal document...I can only hope especially since I still have medical bills and collections calling about them.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987