Hi loves.....SORRY for the delays in between my posts. Some days I feel good and string and others I just curl up and rest all day.
FIRST!!!! Hodaya....I cannot express enough and you know how I feel from out talks about how you NEED to get help NOW! You are heading in the direction I was and have both times I was connected in the "normal wasy" or ileorectal. You obviously are having some major outlet issues or you would not have obstructed or you also need some testing on that small bowel of yours to make sure your not having issues such as Sarah with the whole system having pseudo obstructions and inertia throughout. You are putting yourself at major risk and you need to call your doctor and try the normolax ( your version of Miralax) even though your scared it will not work or stop working. I used laxatived up until they finally admitted me and you do not want a 5 week hospital stay like me because no one would help me.....you need to make them help you or more so seek out and start getting tests done. If you can or if we can all help you pay out of pocket to at least have a consult with that CC surgeon in your area!!!!! You need to do something.
I think the same for you sweet Marisa and you know from our talk last week how worried I am for you!!!! Its not normal for you or Hodaya to just be living off 500 calories a day ot all liquid without something eventually giving out in your bodies. Yes, our bodies will hold out, but as you know with me they give up and with Jen and Rosemary too....and our recoveries have been just that much more complicated and hard to get better!!!! I was beging for help and I think both you and Hodaya need to get further testing ( i know its not what either of you want to do over) but something is not right since your connections.....and fruitloops for breakfast and lunch and maybe soup for dinner is not enough nutrition. I am telling you all what you were telling me just a few months ago and although your both surviving right now it will only take time before your not doing so well. I think it hapened faster with me since I basically had 4 surgeries so close together in less than 2 years and complications with each that like Rosemary said, I was knocking on deaths door. I am not saying your there yet, but you cannot live like this forever, you just cant!!!! and i love you both too much to let anything bad happen to you.
Lori- I had a urine bag (leg or big one) connected to my tube and it was much harder with the smell. My mom strted putting a diluted bleach solution in mine to clean it out each morning. I am sorry they do not think the BCIR would work for you, but you had such a complicated surgery and scenario that an ileo is going to be heaven for you and esp because unlike me you have Wexner who is going to create the most perfect little stoma for you and life is going to be so much better and your time is coming! I miss talking to you....I promise I will get better at posting again. I think of you all daily and pray for you each day more than once!!!
Janie and Judy- Oh how I love you both so much. Judy I am so sad you are in so much pain from that stent, but I hope this gets taken care of soon. You still are the light of optimism on this board and you make me smile everytime I read a post from you and believe me for a while it was hard to get one out of me!!!! Janie...is the Miralax still working for you honey???? I think of you so much honey!!! I miss you both so much!!!! and love and pray for you daily.
Rosemary- I am glad you are holding up sweetie in all that heat. I miss you SO much and cannot wait until your back posting like mother hen to us all, but so happy you are blessed with good health so far and having such a great time experiencing the beautiful places you are!!! and showing everyone that an ileo does not hold you back. Any news on your case??? I think of you so much and thank you so much for helping me see just how sick i was...I think without all of you girls and my mother and husband forcing things in the end I would have been dead. This has been the hardest surgery EVER! but I feel I am slowly....very slowly on the way to getting my life back.
To all you newbies...I am so far behind on your cases so if you can give me your names and just a brief little synopsis of whats going on and what I can pray for for you all. I am sure its been hard for you to follow my case as well....I just hope if I know whats going on with you all I can help in someway. I am sure I have probably had the test or been through what your going through so please if you have time. Its hard for me to stay on long without falling asleep so going back and re-reading is too hard for me. Praying for you all still!
Tracy, I am not sure if this is allowed but my email is [email protected] I think that you and I have so much to talk about regarding our situations. You know they will remove btoh your colon and rectum with the k-pouch/bcir. Basically they are the same surgery, but each surgeon does things (or institues for that matter) a little different and of course CC thinks that they do it better than FL anf vice versa. I must say now that my surgery is done and although i was very unimpresed with CC in so many circumstances when it comes to my surgeon and knowinf he studied directly under Remzi makes me feel so goood and another thing....with ALL the complications I had I was happy to be at CC when I started to go down hill so fast. They had every team of doctors in there that Fri am I kinda crashed and I knew I was in good hands if anything really bad was going to happen and I feel Dr. David Dietz did a phenomenal job when it comes to my surgery. I am going to remain on the optimistic side and think this pouch is perfect and that I will never lose the continence of the valve. The surgery was VERY painful and I am not going to lie. He told me before that I was in for a MAJOR operation and that if anyone had told me it was going to be easy in any sense that they were lying. He also told me very upfront about the vavle slippage and that it happpens in 15% of cases about, but it seems to be in more certain types of people (overweight, he also said I am at such a low risk for pouchitis not have the inflammatory diseases, and people who may not have crohns at first but develop it and then the pocuh fails). This eif us with CI are lucky in so may of these circumstances. He said he could have left a rects=sl stump, but I just wanted it all gone and did not want to deal with having to get it checked every so often. Anyways....the cathing is a challenge only because I am not used to it and I have not perfected the eating to make the stool the right consistency and every 3 hrs is a bit tedious, but I understand stretching the pouch slowly. You can tell when you need to empty because it feel "full" like your full and you need to pee almost. I do not know hoe to explain it perfectly, but you can definately tell. Hydration is so important and that is something I am still working on. Anyways.....anymore wuestions just ask.
AS far as me....I am still have the deep visceral pain as well as the surface pain with my abscesses. 2/3 have pretty much healed, but the big one is the one that causes me the most pain. They increased my Fentanyl patch yesterday to 100mcg which is very high for someone my size, but it truly helos and then I still have the dilaudid and norco for breakthrough. I ventured out for thr first tie this weekend running errands and realized how weak I still am. I could barely move yesterday and feel the same today and last night before I put the new patch on I was hunched over just so painful. about my nausea....it is much bettter, but my pouch only holds about 90 ml right now so i do get nauseated still. I really think my prior vomiting was all from my rectum obstructing me and the food having nowhere to go. every test even recently on my small bowel is still normal. I have not had one episode of vomiting except once since being home and that was from my antibiotics. They are so strong because my infection was so intense and I had not eaten enough with them, but otherwise to bloating or vomiting since surgery. I feel like I did with my ileo.....but its just better for me in a couple ways. One I have a better stoma and two I am not dealing with the bags, skin breakdown, etc. Its crazy I can stand there with my small flush to skin stoma and bend over, walk around the house, etc and nothing comes out and that I am in control of this aspect. This is so different and I really am glad I have had the surgery. So far my pouch is working beautifully...just still trying to thin out my stool becuase I have had to irrigate with emptyingmore than I would like to, but besides making messes with the cath becuase it has a mind of its own I will get better with practice. It does hurt a bit right now to insert, but only becuase I have a sor eon my stoma from the tube I had in for so long. Its healing, but that causes pain and for now it just all feel wierd. Its so new and I am not used to it at all, but I can tell I am going to love it. I have ordered some am patches (much smaller and better than reg bandages). I do have some mucous production, but no very much...i expected more. You do have to use surgilube to cath ans sometimes it goes right in and others I have to play a bit to find the pouch :) I showed my friend who is a nurse just how i do everything the other day ( i knew she would not get grossed out and she was curious) and she said "my God thats just crazy....but she said its such a miraculous idea" Besides no energy, PAIN, and just adjustment I am slowly getting better. As you know I quit becuase of all the surgeries I had (well acually they are holding me in an oncall position so i do not have to technically be re-hired and now that I am not grey and sunken in and gaunt I am going to visit this week to check in. I do not think in any way I could go back before May. My surgery was Jan. 25 and after a 5 week hospital stay and all of my complications I would need, i feel, at least a full 12 weeks. Tracy, this maynot be so for you, but it just depends on how you heal and how yours goes in terms of complications or not, but you are healthier than I going in so thats a plus!!!
Well, this has taken me so long to write and sorry for the length.....I need to post more often so this does not happen, but I have fallen asleep about 10 times during this post:) from my medications. I miss and love you all.
Lizzie