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Posted 9/9/2012 12:28 AM (GMT 0)
Thanks Lolly. I just posted on your post. So sorry you are dealing with this. I know I have stenosis in my new stoma as I have that right sided drainage thing too. Virtual prayers all around. We are all in SOOOO MUCH TROUBLE! Auuugh! Rosemary
Posted 9/9/2012 4:40 PM (GMT 0)
Sarah, that's excellent! Sorry I've gotten behind reading, just swamped with work, but thinking of you. Keep us posted.

Rosemary, thinking of you too.
Posted 9/9/2012 5:32 PM (GMT 0)
thanks guys.. am definitely better than I was. but wonder if that's due to some serious dietary management rather than resolution of any issues. Living on mainly liquids with the odd cracker, biscuit, yoghurt or handful of crisps seems to be ok. If I dont' even attempt to eat, even soft stuff, I seem to be able to manage it and am able to function.. although not really exercise or do much else. Weight loss has stablised too. Am nowhere near as bad as lollylou or Rosemary, but still not right.

If it were a stenosed stoma, then surely my symptoms wouldn't improve? and if it were motility then would symptoms not stay the same regardless of what I ate? uggh.. I don't know. Will see what this Prof has to say.. he's not a surgeon, he's a neurogastroentrologist - one of the best on the planet apparently.
Posted 9/9/2012 6:32 PM (GMT 0)
I'm sure the dietery restriction thing is no fun but if it keeps you more comfortable and on a more even plane until it is taken care of I am sure overall that is better. Truly hope this gets resolved for you easily.
Posted 9/10/2012 5:53 PM (GMT 0)
Sorry the delayed response Sarah....I've been thinking of you recently and so sorry that things haven't improved and they are at this level. Without proper evaluation and diagnostic testing, your symptoms sound like stenosis or dysmotility or both. You've been suffering for quite some time. Simply put, obstructions or motility issues shouldn't exist with an ileostomy because the affluent in the small bowel is so liquid. I'm glad your surgeon referred you right off the bat because you need emergent help. We're the same age and I'm somewhat of a mystery too and we need to be on top of our health because we're young. Wishing you all the best with your appointment and keep us posted!
Posted 9/11/2012 6:41 AM (GMT 0)
So glad you can get in to see someone tomorrow! It's the start to getting this diagnosed and fixed.
Praying all goes well...
Cecilia
Posted 9/11/2012 7:18 AM (GMT 0)
Dear Sarah,

I am so glad you are seeing someone tomorrow. You deserve to have the best help possible.

Thank you again for the good advice. It appears to be a mid-arch sprain due to overtight calf muscles rather than plantar fascitis. I have been massaging, icing, heating, and stretching like crazy. Today I finished 3.5 miles without any crippling pain just a little soreness. I have been strength training as much as I feel is safe without over doing it.

I confess that I have fallen in love with the pink Kinesio tape. The relief to my arch and calf was almost instant. I use a black strip under the patella just from paranoia. I do not want any more injuries. I do not know why but it makes my knee feel more stable.

My yoga instructor has asked me to run a 5K with her in January.
I suppose if I can learn to walk 13.1 miles in three months then it is feasible to be able to run only 5 kilometers in five months. Just two weeks ago I was still walking with a cane! In March I was using a walker. Sometimes, all of this healthiness seems surreal. It has been so many years since I was able to do any sport.

I was always so jealous of how much you could accomplish!

I still have the pain on the inner side of my left knee. It hasn't grown any worse. Tonight I am on a bit of vicodan and so if my writing is strange that is why. I had bad j-pouch cramping and spasming this evening after eating a fresh plum from our garden. They are so beautiful, I just could not resist just one!

Sorry about going on and on about myself but I thought maybe you would understand the challenges more than anyone else I know and you would appreciate how amazing every improvement feels.

I look forward to hearing all about your consultation. I pray he can help you!
Best wishes,
Cynthia
Posted 9/13/2012 5:23 AM (GMT 0)
Sarah, I'm so glad you are getting in to see him so much earlier. Even gladder that ou're feeling somewhat better, whatever the reasons, makes everything easier. Let's see what he says.
Posted 9/13/2012 5:51 AM (GMT 0)
Any news?
Posted 9/13/2012 11:09 AM (GMT 0)
Ah hi Sub.. thanks so much for remembering. Well... the Prof was amazing. He spent an HOUR with me listened to everything right from the start, examined me, the stoma and asked lots of questions. He was SO lovely and considered and obviously has a brain the size of a planet. Anyway.. he examined the stoma and says there is a very tight 90 degree turn at the fascia level where he can't get his finger through.. 2 other surgeons have said the same thing. So not exactly a stenosis, but he said it was very unusual. He's booking me in for an ileoscopy first to rule out mechanical obstruction and he also wants to review all my CT scans with his team. Should get that done in next 7-10 days.

But.. given my history of 'colonic dysmotility' he said that we need to keep that in mind too and that there may be a small bowel motility issue too or instead. He's starting me on a course of antibiotics followed by probiotics to treat any bacterial overgrowth which he said might be contributing and may improve symptoms slightly. He said it wouldn't be surprising if I did have some SIBO. Also gave me prescriptions for meal supplements/drinks - which no-one else has done before now.

If the CT scans and ileoscopy don't show anything, he wants to then do a small bowel manometry test, where they put a tube down my nose and into the small bowel for 24 hours and monitor the waves and muscle contractions of the small intestine. That would then show/diagnose small bowel motility disorder, although he said they'd probably want a biopsy too.

So all in all, he was fantastic. I feel in very safe hands, totally trust him and his obvious extensive knowledge. If they do want to refashion the stoma, he'll have one of his team do it in London.

He's taking things a step at a time but with the urgency it needs. He did also say that it wouldn't be at all surprising to have a motility disorder with anyone who's had extensive/repeated surgery and/or peritonitis. There are others on here at the moment who may well be suffering from this and/or combination of issues too.

How are you feeling?? any better?? and has anyone heard from Rosemary???

thanks for keeping in touch S x
Posted 9/13/2012 11:18 AM (GMT 0)
Sarah,

This is great news! It sounds like you've really found the right person to treat you and that there's a plan. What a relief! Sounds so thorough and sensible and like you'll have some answers soon. Thanks for updating.
Posted 9/13/2012 11:37 AM (GMT 0)
thanks Blue.. :-) yes lets hope so! he was fab and I think him and his team are world class. feel v relieved.

how are you doing??
Posted 9/13/2012 1:15 PM (GMT 0)
Sarah so happy you found him and he can get this resolved satisfactorily and it doesn't take too long overall. You have been through a lot but glad you are now in such competent hands.
Posted 9/13/2012 2:33 PM (GMT 0)
I can't stress enough how happy I am for you that you've found such excellent care! I wish you all the best!
Posted 9/13/2012 2:59 PM (GMT 0)
Thats great sarah - did you see Knowles after all?  Glad he was nice. x
Posted 9/13/2012 4:59 PM (GMT 0)
Dear Sarah,
I am so relieved that you are getting extremely good care. How far is London from your home? Will it be difficult to travel back and forth for examinations and surgery?
I am ok. My j-pouch has been acting up all week so I am not getting a lot of sleep. I have been busy doing CCFA fundraising. They provide the majority funding for two ulcerative research projects I am interested in. One study is examining if an imbalance of intestinal bacteria triggers ulcerative colitis in people who have inherited the uc genetic code. Another study is re-examining whether or not the ulcerative colitis genetic code previously identified is in fact the correct code. It may simply be an indicator of inherited autoimmune disorders. The second study is being done at a medical school within a half-kilometer of my home. There is a third study looking at cloning the good bacteria in an individuals intestinal system and reintroducing it into the intestine after the balance has been disrupted by an event such as a course of antibiotics. That study did not receive a lot of funding which is too bad. The same study was done in Germany with great success at putting ulcerative colitis in remission.
Your good news makes my day one hundred percent better. Please keep in touch!
All the best,
Cynthia
Posted 9/13/2012 5:28 PM (GMT 0)
Sarah, the new doc is exactly what we'd hoped for - he really sees the big picture, so it's good that your earlier doc was being so cautious with you. Best is that you are feeling this trust!
Posted 9/13/2012 9:16 PM (GMT 0)
thanks everyone.. I could have kissed him to be honest!
it's about a 2 hour trip door to door, via trains, tube/taxi - driving into Central London would be a bit of a nightmare and easier to take the train. It's not ideal as my hubby works long hours in London too and with the kids at home just takes lots more organisation.. and if I end up having surgery it would be super hard for my family to visit. But I'm seemingly in with this amazing team now, so I don't think I could be in better hands. Karen it wasn't Knowles in the end, but Prof Aziz who is part of the same team. He was SO nice.

Cynthia I'm sorry to hear your jpouch is acting up.. what's the problem? have they done any tests? Are you still doing the liquid thing? thanks for your good wishes. means a lot :-)

I've lost a total of 14lbs and am starting to feel a bit wobbly and too skinny. Mostly muscle tissue loss as well which sucks as I've spent the last year trying to rebuild it. SIGH.

Anyway.. thanks again to all of you for your concern :-) this forum really is the best. Will keep you posted.
Posted 9/14/2012 12:04 AM (GMT 0)
 

So happy for you, Sarah.   Sounds like you are with the right group :-)

 

Posted 9/15/2012 9:46 AM (GMT 0)
sarah-
sounds like the new doc is taking great care of you. I was happy to hear about him scoping through the stoma and getting you on some proper nutritional supplements.

Don't worry about location or getting to him now. You and your husband will figure it all out. After many problems and not so great doctors in my local area, I am now cared for at Cleveland Clinic which is almost 3hours drive from my house. No matter how difficult, and expensive it is, to get to appointments, and for my husband to stay when I have surgeries.. I know it is our only choice to get the quality of care I need.
good luck and I hope as your new doc continues testing that he gets you sorted out.. and quickly too!
Posted 9/15/2012 3:22 PM (GMT 0)
Sarah, Every once in a while the j-pouch starts spasming. I take valium and it goes away. It wakes me up at night so I am feeling sleep deprived. There is lot of emotional stress in my life at the moment, I suspect that is a significant factor. I look forward to hearing news about your next appointment.
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