Guest guest Posted September 22, 2010 Report Share Posted September 22, 2010 Can you share a little bit about how you are feeling now? (Do you still have cramps? etc.)Are you following the SCD even with an ileostomy bag? How much has it affected your life? Sorry for all the questions, but my doctor thinks it will be inevitable for me. I am hoping to prove her wrong, but I have been in a flare since February. I am 18, in college and really don't want the surgery. Anything you can share would be greatly appreciated, thanks. > > Hi, Its been a while now since my last post. Some of you may remember me saying in June i was going for major surgery to get my colon removed. I was really sick as my chrons got quite serious in my large bowel, i wast eating and dropped to 6 and a half stone. I tried scd as a last resort in march but i was too sick for it to work.I also tried LDN too but it seemed any medication i tried didnt work and i couldnt stay on prednisilone forever Well i got the surgery done there in July and i spent a total of 9 weeks in hospital. I'm now left with an ileostomy which at 26 is hard to deal with but im slowly feeling better as the days go by. Its a tough ordeal for anyone to go through and i just wish i foud out about the scd diet long before i did and maybe i might of avoided surgery i dont know. Anyway just thought id leave this post as there were a few people that asked me to let them know how i waqs doing. > > Thanks Mark > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2010 Report Share Posted September 22, 2010 Hi, Its hard to really say how well this operation has worked out for me as its only been 2 months since and im still not back to full strenght yet but that will come once i start eating better and gain more weight. To answer your questions though no im not on scd it would have been impossible to stay on scd while in hospital. I wasnt even eating myself i was being fed interveinously and through a thing called an NG feed which was a tube that went in my nose then down through my throat and into my stomach. The cramps are gone yes as they removed my large bowel where my chrons was. Im only left with my small bowel now which is doing fine and hopefully stays that way. Ive got a lot of healing to do as recovery takes a long time especially since i was so sick when getting it done. Mark > > > > Hi, Its been a while now since my last post. Some of you may remember me saying in June i was going for major surgery to get my colon removed. I was really sick as my chrons got quite serious in my large bowel, i wast eating and dropped to 6 and a half stone. I tried scd as a last resort in march but i was too sick for it to work.I also tried LDN too but it seemed any medication i tried didnt work and i couldnt stay on prednisilone forever Well i got the surgery done there in July and i spent a total of 9 weeks in hospital. I'm now left with an ileostomy which at 26 is hard to deal with but im slowly feeling better as the days go by. Its a tough ordeal for anyone to go through and i just wish i foud out about the scd diet long before i did and maybe i might of avoided surgery i dont know. Anyway just thought id leave this post as there were a few people that asked me to let them know how i waqs doing. > > > > Thanks Mark > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2010 Report Share Posted September 22, 2010 At 06:01 PM 9/22/2010, you wrote: Anyway just thought id leave this post as there were a few people that asked me to let them know how i waqs doing. Mark, We're glad to hear from you. I've thought about you quite a bit these last weeks. Like you, I wish you had found SCD much earlier. But, you know, it can help with managing the ileostomy, too. So we'll be happy to work with you on that, to assist your healing. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2010 Report Share Posted September 22, 2010 At 06:12 PM 9/22/2010, you wrote: my doctor thinks it will be inevitable for me. I am hoping to prove her wrong, but I have been in a flare since February. I am 18, in college and really don't want the surgery. I, too, hope that SCD proves this doctor wrong. It did for my mentor, who was told her gut looked like " bloody lace. " I hate that these doctors think that surgery is inevitable and that a healthy diet has no effect on illness. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2010 Report Share Posted September 22, 2010 Mark, I remember you. Wow, 9 weeks is a long time. I am glad you are doing better. Do you have the ostomy permanently or will you be able to have surgery to re-attach it later? I know a young man who had this done at 18. He is a wonderful person and I am sure you are too. Don't forget that a bag does not change that, albeit it is a difficult thing. Don't look back and regret not doing SCD as this is not your fault or the result of something you did or did not do. Look forward to a long healthy life. Best wishes, PJ > >Anyway just thought id leave this post as there > >were a few people that asked me to let them know how i waqs doing. > > Mark, > > We're glad to hear from you. I've thought about > you quite a bit these last weeks. Like you, I > wish you had found SCD much earlier. But, you > know, it can help with managing the ileostomy, too. > > So we'll be happy to work with you on that, to assist your healing. > > > — Marilyn > New Orleans, Louisiana, USA > Undiagnosed IBS since 1976, SCD since 2001 > Darn Good SCD Cook > No Human Children > Shadow & Sunny Longhair Dachshund > Babette the Foundling Beagle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Doctors basically condemned me to hell. Did not even really want to discuss post surgery care and sold me on surgery with dangling the carrot " you'll be able to eat chocolate and ice cream with no issue " and I am like " huh? " what? This is why I need to make the decision to have my insides removed? Surgery was a great option for me no doubt- but eating all of that crap- like encouraging me to? ridiculous. I would be on the operating table in no time with them cutting away at my small bowel. I am so tired of their discouraging attitude.. and it's insane since I have such better docs now.. still. Ughhhh... Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Hi Marilyn, PJ, Thanks for the replies. Yes i am permanently on an ostomy bag as they took out the whole large bowel and rectum so it was a big op i got done. Recovery was slow and hard. I was 7 hrs down in theatre and had all sorts of tubes and I V lines sticking out of me when i woke up. The first few weeks were the toughest as you feel awful. Trying to get out of bed was torture as the tiniest bit of pressure on my stomach wound was agony and getting poked with needles everyday wasnt nice. I then had another setback when i had a scan done which found a collection of blood around my abdomen so i ended up having to get a tube into my stomach to drain it out which stayed in for about 5 or 6 weeks before they took it out. I also developed a really bad back while in there due to lack of movememnt which had me in agony everyday and i could not sleep because of it so i was exhausted everyday. Now that im home all im doing is sleeping lol. I dont think words can ever explain how bad it was though and the fact i was so sick and so underweight when having the op meant recovery was always gonna be longer and harder for me. As for diet when im feeling better and stronger i will try out some scd recipes that might help me feel better. At the moment im on these drinks called fresubin there the same thing as ensure and basically eating what i can to gain weight. Mark > > >Anyway just thought id leave this post as there > > >were a few people that asked me to let them know how i waqs doing. > > > > Mark, > > > > We're glad to hear from you. I've thought about > > you quite a bit these last weeks. Like you, I > > wish you had found SCD much earlier. But, you > > know, it can help with managing the ileostomy, too. > > > > So we'll be happy to work with you on that, to assist your healing. > > > > > > — Marilyn > > New Orleans, Louisiana, USA > > Undiagnosed IBS since 1976, SCD since 2001 > > Darn Good SCD Cook > > No Human Children > > Shadow & Sunny Longhair Dachshund > > Babette the Foundling Beagle > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Dear Mark, Sorry to hear that you have been through such a tough time with your surgery and the follow up procedures and that your back was giving you so much trouble while you were in hospital. Lack of movement can be a real killer, pain-wise, I can't even imagine how painful such an extended stay on your back would feel. I was wondering how you were and it is good to hear from you and also good to know that you are finally at home after all that. Hopefully your back isn't as bad anymore and you have more mobility. Stay well - and remember, pal, your job at the moment is to feel better and gain weight! We're all here supporting you. Mara > Hi Marilyn, PJ, > > Thanks for the replies. Yes i am permanently on an ostomy bag as they took out the whole large bowel and rectum so it was a big op i got done. Recovery was slow and hard. I was 7 hrs down in theatre and had all sorts of tubes and I V lines sticking out of me when i woke up. The first few weeks were the toughest as you feel awful. Trying to get out of bed was torture as the tiniest bit of pressure on my stomach wound was agony and getting poked with needles everyday wasnt nice. I then had another setback when i had a scan done which found a collection of blood around my abdomen so i ended up having to get a tube into my stomach to drain it out which stayed in for about 5 or 6 weeks before they took it out. I also developed a really bad back while in there due to lack of movememnt which had me in agony everyday and i could not sleep because of it so i was exhausted everyday. Now that im home all im doing is sleeping lol. I dont think words can ever explain how bad it was though and the fact i was so sick and so underweight when having the op meant recovery was always gonna be longer and harder for me. > > As for diet when im feeling better and stronger i will try out some scd recipes that might help me feel better. At the moment im on these drinks called fresubin there the same thing as ensure and basically eating what i can to gain weight. > > Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Mark, Thank you for the update.. I had a heck of a hard time after surgery too. I am so glad all of that is in the past. I wish I too would of known just how hard it is to move and get out of bed... on the other hand had I known I don't know if I would of done the surgery even with the threat of an unidentified mass. I truly wish for you to heal and feel better and find what works for you. I cannot even imagine what you have just been through and I wish you nothing but strength and courage and a good mood. Big hugs and keep us posted, You have a lot of support here.. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Mark, It's good to hear from you and that you are recovering, however slowly, from your surgery. I'm so sorry it's been such a long slow business for you, and I hope from here on you will make gains much faster. But of course the main thing is that you are doing better. Many decades ago, my uncle (after seemingly endless troubles) had an ileostomy. I am sure he didn't like it, but it made all the difference to him. He was 6' 4 " and had gotten down to 140 pounds before surgery. Afterwards, his weight went back up to normal and the bag didn't seem to interfere with his life very much. I hope in awhile you will be feeling very much yourself again and please keep us all posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Mark, You are a very strong person and now just focus on getting well. You are also young enough that with medical progress, that bag may not be forever, so for now, one day at a time. I wish you a speedy recovery and a long full life ahead. Keep us posted, PJ > > > >Anyway just thought id leave this post as there > > > >were a few people that asked me to let them know how i waqs doing. > > > > > > Mark, > > > > > > We're glad to hear from you. I've thought about > > > you quite a bit these last weeks. Like you, I > > > wish you had found SCD much earlier. But, you > > > know, it can help with managing the ileostomy, too. > > > > > > So we'll be happy to work with you on that, to assist your healing. > > > > > > > > > — Marilyn > > > New Orleans, Louisiana, USA > > > Undiagnosed IBS since 1976, SCD since 2001 > > > Darn Good SCD Cook > > > No Human Children > > > Shadow & Sunny Longhair Dachshund > > > Babette the Foundling Beagle > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2010 Report Share Posted September 29, 2010 At 11:06 AM 9/23/2010, you wrote: As for diet when im feeling better and stronger i will try out some scd recipes that might help me feel better. At the moment im on these drinks called fresubin there the same thing as ensure and basically eating what i can to gain weight. Sometimes you have to do what you have to do. I had, as you may know, major surgery for uterine cancer in 2008. Monster 24 " slice across my gut, and yeah, I know what you mean about the tubes and needles. I'd look into things like savory smoothies -- meats and cooked veggies pureed with homemade broth -- maybe you could have someone make some things up for you. Those liquid nutrition things aren't, in my opinion, worth the cans they come in. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2010 Report Share Posted October 1, 2010 welcome back man!!!! hope you're doing as well as can be and soon you're up doing the jig!!! LOL eileen > > Mark, > > Thank you for the update.. > I had a heck of a hard time after surgery too. > I am so glad all of that is in the past. > I wish I too would of known just how hard it is to move and get out of bed... on the other hand had I known I don't know if I would of done the surgery even with the threat of an unidentified mass. > I truly wish for you to heal and feel better and find what works for you. > I cannot even imagine what you have just been through and I wish you nothing but strength and courage and a good mood. > > Big hugs and keep us posted, > You have a lot of support here.. > > Jodi > Quote Link to comment Share on other sites More sharing options...
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