The SBFT is a step in the right direction.My SBFT was an all day affair :thumbdown:,but they got good images and,really...what choice did I have.The dye wasn't that bad tasting,much better than the colonoscopy 'brew'.They said they couldn't reach the strictures with an ordinary scope. I had a sigmoidoscopy which I was told was almost a colonoscopy because of how far they went during it. I have multiple strictures in my distal ileum, which they are now not sure are inflammatory or scar tissue. It was brought up at my last GI appointment when I again asked about dilation, but I was told that special funding would have to be applied for. I go to St Marks in the UK where they do it. So hopefully after the SBFT we can get something done.
Good news. Hope it gets things under control!I got my insurance authorization in the mail today, so looks like I am indeed joining "the club." It was a good sign to me that I felt relief at seeing the letter. (I'd previously been pretty apprehensive about starting a med with such potentially serious side-effects.) Once I get a date, I'll be scouring the forums and picking people's brains about tips for the hospital.
Wow! 6?? (HUGS)Hi Dixiedoll, sorry that you are facing more. I have had six resections, and still have enough bowel to function (I have to take meds to firm things). I stopped smoking before my last one, they refused to operate otherwise. Switched to e-cigs, still n them but much healthier than before. Let us know how your appointment with the surgeon goes.
Hope you get seen soon Dixiedoll and that the surgery helps improve your quality of life. I know you've said medications failed, but have you heard about/discussed Entyvio? It's a new drug that targets the gut. Might be worth mentioning/asking about for the future if needed.
There's a new forum for it over here if you want to read up a bit on it: http://www.crohnsforum.com/forumdisplay.php?f=319Thank you!
I'm not familiar with that, no. I'll ask this new GI doc about that since I'll be going to UNC and they tend to know more than my small town doc.
I checked out the thread,I'll bring Entyvio up to my GI and colorectal surgeon at next weeks appointment.Even if it's not for me,I'd like to know more about it.
No mention of dilation or any further treatment of the stricture. At the moment I am being cautious with my diet. No relapse in the last three weeks at all. Fingers crossed.Wow, sounds like you've been put through the wringer alright. Here's hoping you can avoid surgery. What are they going to do about the stricture, Dilation??
I know strictures can be caused by a mechanical event (such as scarring) which often requires some sort of physical intervention (which could be dilation or resection) or by inflammation. If caused by inflamation it can often be treated medically - in the past a shock treatment of steroids has always addressed by strictures when they were from inflammation or thickening of the bowel wall.No mention of dilation or any further treatment of the stricture. At the moment I am being cautious with my diet. No relapse in the last three weeks at all. Fingers crossed.
Interesting. They slammed me with the steroids while I was on the NG tube, but have not had a CT scan since. Won't know how the stricture reacted until the next time I need a CT scan.If caused by inflamation it can often be treated medically - in the past a shock treatment of steroids has always addressed by strictures when they were from inflammation or thickening of the bowel wall.
I should do more walking. I did as much as I could during the hospital stay, when I was discharged and during my recovery I didn't dare walk the road at home in the condition I was in. Now that I am back to work I walk a lot during the day, should walk outside during lunch. With DST in effect there isn't any daylight hours to walk before/after work.So sorry to read of yor tough run there. I know it can be hard but sounds like you're on the road to recovery.
One of the best things you can do is walking to build your endurance. I started walking following my surgery in June and worked my way up to 2-3 miles. I was hospitalized last month (again, twice....sigh) with SBOs and as I was recovering the nursing staff was amazed at my endurance cruising around the ward. The walking definitely helped speed my recovery!
I guess only a crohnie can say that this is good news and mean it! I hope you have your 'normal' life we all seek.Well, the PICC was put in for the TPN. The purpose of the TPN is to nourish me because the Surgeon wants the bowel completely shut down.
Essentially, my large intestine is seeing its last days. By not putting any food in me, the Surgeon thinks the abscesses will subside quicker and we can proceed to my surgery.
The TPN plus being on clear fluids is surprisingly not too bad. 15 hours of feed at night. Yesterday afternoon I got my first day pass and I went home. First thing I did was get a haircut which felt good. I don't really feel hungry which is a good thing.
No fistulotomy with the drain. Even my fistula in theory has single digit numbered days.
If all goes as planned, the Colon comes out. The urologist and Surgeon get the fistula tract cleaned up (urologist because the Surgeon has to cut so close to everything that the fistula has mapped itself next to). He places the Stoma in the right/perfect place, and then after all that, I can heal and live somewhat 'Normal' for the first time in 27 odd years.
Thanks DJW.I was getting them weekly. If never looked forward to surgery as much as then.
Hope your appointment went well today!! I spent the day at Northwestern hospital in Chicago, my Mom got her 91st chemo, so she's where I get my inspiration & we both are warriors. Its so nice to be on this forum & to hear other stories & similar problems. My biggest problem is finding a local GI, having a hard time finding a Dr to take my complicated case, but my old employer Dr Johnson just referred me to a friend of his that loves complicated cases. My anxiety is through the roof!Oh my Mad Bagger, I can't imagine. You must be an absolute trooper to go through 19 surgeries. I have had my share of stuff to deal with, but nothing like that. I got call today and have apt with surgeon on Monday, so am hoping for some answers. It is so hard not to get frustrated. Thanks for your comments. This forum is so helpful even if just to know we aren't alone in the world!! Take care of yourself.
I was hospitalized something like 15 times in a two year period when I finally met with a surgeon. About 9 of those were bowel obstructions, others were complications of Crohn's plus two bouts with pneumonia brought on by my med regimen at the time.How often do most of you have SBO flare? I've had about 5 in last 5 months. But I feel pretty good between bouts. I'm trying to decide if it's time to have surgery discussion with my md. I am maxed out on maintenance Meds, so can't really adjust those.
Any input would be appreciated.
I should have quoted your post. The answer is above.Thanks DJW.
A couple questions, if I may. Were you still functioning when you were getting them weekly? (Ie eating, holding weight, working) How long ago was your surgery? You doing well since then? Were you able to decrease Meds after surgery?
I had uveitis as an initial symptom of Crohn's...but mostly because my Crohn's disease was undiagnosed for three years. The uveitis was HORRIBLE though...very painful. I hope you recovered well...topical steroids work wonders!Does anyone else have eye issues (uveitis) with their Crohn's disesse? This is a newer symptom for me & don't know much about this, wondering if its another flare?
I'm very sorry for your loss, peluchde.Chirpy, my obstructions have not magically disappeared, but after 5 in one year that required hospitalizations and a trip to the Mayo Clinic, I started taking Humira. I was fine for 4 years, but it has stopped working and I had another obstruction. Now I'm on Imuran and hoping it works. My sister died at age 44 from an obstruction that perforated. Please don't take that chance
I've been on Humira since Dec.2010, now the problem for me was I had surgery in August 10 & by the end of Sept 2010 my CD was reoccurring. It took until Dec that year to get me scoped & then onto Humira. Damage already done sadly & a further surgery was required for another stricture in May 2012. Since then its been Humira all the way until this year when I had 3 infections in the space of 4 months & for a month of that I couldn't inject Humira. Well guess what, my CD came roaring back & sadly I think I've another stricture forming. Due to be scoped soon.understand about the time bomb... but....
Have your meds stopped or prevented your obstructions?
I've been experiencing dry eye and inflammation. Was put on cortisone eye drops for a week and Bion eye drops 4x/day for a week after. Helped a lot.Does anyone else have eye issues (uveitis) with their Crohn's disesse? This is a newer symptom for me & don't know much about this, wondering if its another flare?
Maybe check with your physician(s), in terms of anything to keep the soups and smoothies from flying through you. My PCP is big on soluble fiber: he has me taking two heaping tablespoons of whole ground flax seed meal in a big glass of water once a day (i do it first thing in the morning). Not an enjoyable beverage, but not too bad with some juice (usually a bit of lemon or mandarin lime from our back yard trees), and worth it to me to not be shooting stuff out. For my particular flavor of CD, that and a product called Isatis Cooling that this same doctor also recommended (non-prescription) do a lot to keep me impressively “regular”.im having an op for bowel obstruction in few wks time as i have to stop taking some tablets first but can only eat a smooth diet,any ideas what please,my fruit smoothies go straight through me as does soup,only meal ok is mashed spud and carrot and jelly and im sick of it,oh,did have some mashed fish yesterday and that was ok vivien
Hi Vivien,im having an op for bowel obstruction in few wks time as i have to stop taking some tablets first but can only eat a smooth diet,any ideas what please,my fruit smoothies go straight through me as does soup,only meal ok is mashed spud and carrot and jelly and im sick of it,oh,did have some mashed fish yesterday and that was ok vivien