still feeling crappy but today I got news that made me happy

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 3/6/2008 11:27 AM (GMT -7)   
Hi all,
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 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 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 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

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 3/6/2008 11:36 AM (GMT -7)   
Congrats on your acceptance! Most law firms desire to have a professional reputation. If it is a big firm, make sure you remind them that you solved the issue on your own. The first meeting was probably more of a consultation. You really shouldn't owe much. If they try to bill you, call and speak with the lawyer you saw and question it.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!

Veteran Member

Date Joined Sep 2007
Total Posts : 565
   Posted 3/6/2008 1:54 PM (GMT -7)   
nice to hear from you steph! sorry times have been so rough and i so wish you a speedy recovery. and i am really glad to hear your ssdi was approved. little less to worry about is always a good thing :)
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
meddies: 6mp, percocet, trazodone, ativan, iron, calcium, folic acid & some other vits

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 3/6/2008 2:27 PM (GMT -7)   

Congrats on your good news.................I am sure that will help you and you certainly deserved it.  I am so happy for you.


Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 3/6/2008 2:42 PM (GMT -7)   
Congratulations on getting approved.
Wow. we really should not have to say that. We pay disability insurance premiums our whole working life it should not seem like a miracle when someone who is obviously unable to work gets benefits.
Oh well, enough of my rant since that is the way the world is I am really happy for you.

Regular Member

Date Joined Nov 2007
Total Posts : 146
   Posted 3/6/2008 2:56 PM (GMT -7)   


Consider yourself very lucky to be approved for SS disability, I also had to get a lawyer to assist as I was headed for a severe financial crisis. Long story short I was awared SS dissability, but it took almost 2 years. The lawyer Got $5,300. Just be carful as they also charged me for the paperwork that they had to find. I know this was not told to me upfront, but I just paid it, about $600. Kinda sneaky. But I was so thankful to get it over with.

As For all of your surgeries, I think you are a very curageous person to get through all of that. it's a miracle. My most feared thing is the NG tube, I will do anything not to have that, it's horrible. I have had that several times too. I hope you have a speedy recovery, and you resolve all of your problems.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 3/6/2008 6:56 PM (GMT -7)   
Hi Congrads. on getting some good news hope you heal soon. Had a resection in Jan. myself and just about healed had an infection so know what it is like to have complications I am feeling much better though. Hopefully you will put some weight on now . Wishing you all the Best .lol gail

Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 3/7/2008 11:29 AM (GMT -7)   
I heard back from his legal secretary later on yesterday he had called the office from his vacation. She informed him that I had gotten an answer (I had an appt with him last friday at 10 am and he left after work with his fam for Arizona) about my SSDI. I was shocked to hear yes on my 1st attempt after 3 months with no legal assistance. He informed his secretary to call me and tell me no fee since he only met with me that 1 time but if I have any questions feel free to call and they also informed me that SSI will at times re-evaluate the case about 3-5 years (not sure if she said every 3-5 or not).

As far as weight my scale said 85 and later that day at my GI his scale said 90...came home wore what I had on at the GI and my scale still said 85. When the hospital told me 85 when I got home it said 85 too. I went to my PCP last week and my scale said 90 his scale said the scale now says 87. My mom said it looks as though my face filled in a little more and I did have to get some newer clothes since all of my stuff fell off of me except sweats and pants with drawstrings.

As ar as the payment to disability lawyers there is a set fee for the US. It actually was in the paper a cpl weeks before I applied and the paper I signed reflected what the paper said. The law is they get paid 1/4 of the retroactive pay or $5300.00 whichever is less.

I am just thankful that I dont have to pay it my husband really needs a new used car...his got hit over the winter at night and no note etc. Granted it is a very lod car well not too old its a 1988 or 89. They dented in the door, busted the turn signal off the bumper and knocked the side view mirror off. He was upset that AM when he saw his car, he used duct tape for the side view (it was being held by a cpl of wires to the car). When he left work that day he gently rolled down the window just enough to get his arm out the window to adjust the mirror and before he got it down 2 inches the window shattered all onto him...and he works in MA 35 miles from home...yup he had a cold riode home. He used a bag for a cpl days but had to remove it to drive so that he could see. My dad was able to get some plastic so he has a makeshift window now but it cannot be opened plus its making noise etc and he fears the transmission is about to go...and my car is acting up again while I cannot drive he is using my car but once off the fentayl trust me I will be going out lots...moved in with my grandpa and he treats me like I am 5 tried to come in the bathroom when I am getting into the shower and thinks I cannopt do stuff comes up to our floor when he hears a noise and he wont allow a door to be put up. He does dangerous things but he blames me for everything its awful he comes up here and wakes me up to get a kiss complains at me for everything breathes down my neck when I am doing something asks me what I am doing every second of the day grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

So yeah we need another car since his may go at any time and I should be driving in about a month and a half.
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

Veteran Member

Date Joined Jul 2003
Total Posts : 1256
   Posted 3/7/2008 4:35 PM (GMT -7)   
Good for you !!!!!!!!!!
I thought they stopped that retro pay you just start getting paid no more paying you back from date last worked, is that true??
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)

Happy Life
New Member

Date Joined Feb 2008
Total Posts : 6
   Posted 3/7/2008 7:24 PM (GMT -7)   
All I can say is Wow!!! I am so sorry to hear all that is going on with you- I can not imagine so many hospital stays, surgeries, pain etc.... I almost feel bad telling you I have been lucky so far- I have been on Remicade for 6 years and doing very well- No surgeries, no and hospital stays- I was wondering why you stopped taking remicade- you mentioned joint pain- I have been suffering with it now for a few months- it use to be bad in my wrists right before I was due for remicade- now it seems to be more often- especially my hands-I haven't mentioned it to the doctors- I hope things get better for you soon-
Living with Crohns Disease since 2000, currently taking Remicade every eight weeks

Veteran Member

Date Joined Sep 2005
Total Posts : 778
   Posted 3/7/2008 10:32 PM (GMT -7)   
Any good news is better than bad news!
So sorry you had such a hard recovery.
I noticed that the nurses did the dressing changes
correctly with sterile technique and the docs messed up.
Glad to know that most nurses are still trying to protect
their patients. Too bad the surgeons don't care about
asepsis once out of the OR! I have seen ALOT of surgeons
do this and it is soooo wrong.
Get well now hun.
I am a Certified Doxie Lover(Weinerdogs)

Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 3/8/2008 1:24 PM (GMT -7)   
I was stopped on the remicade since I ended up in the hospital with the perforation I had set up my next remicade appt but it was the week after I was hospitalized so I canceled and I had been seriously debationg changing my GI since he kept telling me that I dont want kids does he know when I want them etc I know I need the okay but he was never going to give me I had been flaring since August of 06 and both he and his PA refused to believe me even with medical tests proving that I was in a bad flare. It was even documented in my filed when I had my PPD results transferred to my new GI...the new GI is younger, willing to try newer meds if needed and willing to work with me as far as knowing I want a family so he is trying to get me to the point where I am well enough to do so.

My joints began bothering me in Oct of 1987 I was diagnosed with CD in Dec 1987. Through the years I had more joint pain , swelling, etc than gut issues. That was the reason I began Remicade in the 1st place since I used all of the other options to help joint pain and either they did nothing or they helped my joints but made the gut symptoms flare. I began having severe reactions to the point of chest pains where I was told to go to the ER after Remicade and they would last a day or 2 also got heart arrythmia and sevre tachicardia even with premedding with prednisone, benadryl and tylenol. Also when I would get a cold it would always turn to bronchytis and on a few occasions it turned to pneumonia. My PCP never wants me on remicade again due to the reactions I began having as well as the breathing issues it caused me since I have bad asthma.

I had a cold while on Humira I did not take the shot that week and got the okay from my doc to take it the following but the cold didnt even travel to my chest at all and that was the 1st time in 6 years that it went as far as a sinus infection and stopped and I only needed 1 round of antibiotics where in the past I needed 2 or more. I also have found I have less vaginal yeast infections now too, I had 1 every month when I was on both Imuran and Remicade and I am allergic to OTC remedies and all the probiotics were not preventing them.

Lucky to know that the VRE went away finally I was tested positive for it a cpl times last year after my post op infection thanks to the moronic resident who got feces in my incision and refused to flush the incision after ...she did it 2 times no now gone from me the hospital likes 3 negative stool tests before saying it is gone so at least that is long gone and hopefully never have HAI again.

the news had stories about HAI the other day and that 90,000 people die from them every year and they are all reported to the CDC which I knew that fact but not the amount that get them and they are increasing again and the number of deaths per year with them....I swear that moronic resident better be working to be a doc in the morgue cuz otherwise she will be getting herself sued lots

ok rant is over bum is burning even with the immodium post op and questran ....ugh cant figure out the best to use...think ill post a new topic now
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

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, November 18, 2017 11:01 AM (GMT -7)
There are a total of 2,895,079 posts in 317,766 threads.
View Active Threads

Who's Online
This forum has 157368 registered members. Please welcome our newest member, lovelyladyrosie.
351 Guest(s), 12 Registered Member(s) are currently online.  Details
DBwithUC, alunke82, BigMak, Dahlias, SomeonesMom, Girlie, tlc1995, BillyBob@388, Sean.scott256, Uniform Charlie, Andromache, Tall Allen

About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow on Facebook Follow on Twitter Follow on Pinterest
©1996-2017 LLC  All Rights Reserved.