Hello dear RCTQ folks,
I was diagnosed with ulcerative colitis at just before my 20th birthday
in 1992. So I've lived with it for about 17 years now. In the
beginning, I had a permanent ulcer and my colon looked like hamburger
meat (I have photos). The flare-ups of my condition went down to 3 a
year, then twice a year, then annually, then once every couple of
years.... I think my last flare-up was about 5 or 6 years ago. I took
part in a dietary study of ulcerative colitis patients at Ninewells
Hospital in 2003-2004 and that really helped to isolate which foods I
should not eat, which in turn improved my condition. I cannot thank the
staff at Ninewells enough because I see a gastro-intestinal specialist
there once a year to assess my condition, and with the help of the NHS I
can afford to take the medication, daily, which I need. When I moved to
the UK 15 years ago, that medication cost 10 times as much in the US
(after converting dollars to pounds and so on). So I not only was able
to receive the best medication for my condition, I was able to be
monitored and ultimately, vastly improved. My condition was so improved
by 2002 that a biopsy was ordered, to make sure I had actually been
correctly diagnosed with ulcerative colitis.
Fast forward to 2010. Apparently during pregnancy, there are so many
hormones floating around in the pregnant woman's system that conditions
such as ulcerative colitis improve! Who knew? However, after the baby
is born and the body goes through a crash course in normalising hormone
levels back to pre-pregnancy levels, the ulcerative colitis can
flare-up. I didn't know this, no one explained it to me. Two weeks
ago, I picked up the Noro virus in the hospital while we were there with
Tristan for his 6-week check-up; we hadn't been anywhere else that was a
public place and even though I washed my hands before we left the
hospital..... well, I had sickness and diarrhea within 36 hours, and my
body worked for 2 days to clear itself of the perceived "poison".
Afterwards, I was left with all the symptoms of an ulcer - lots of blood
loss and an inability to be too far from the loo for very long. After
this had gone on for 10 days it occured to me that it might not be
gastroenteritis, it might be an ulcer. So I went along to the GP for an
appointment, which was cancelled (long story) and by the time I was seen
it had been 2 weeks since I had contracted the Noro virus. The GP
wasn't used to seeing an ulcerative colitis patient, and couldn't pick
apart if it was 1) a flare-up, 2) a reaction to the baby being born and
the colon just needing to calm down again or 3) a reaction to the
effects of the Noro virus. So she called Ninewells and they insisted I
be admitted to the Gastro-enterology ward. And that ward said, "No
babies- the risk of picking up MRSA is too great".
Therefore, I fed Tristan on Thursday before he left, and then I was
given steroids to calm the colon down. I had another big dose of
steroids in the morning, but by then, I had had blood tests, an ECG,
x-rays of the colon, etc and the consultants had come to the conclusion
that the colon looked fine, I didn't fit the profile of a person having
a flare-up, and I could be discharged. Also, they changed their mind
and said it would be fine to breastfeed while on steroids (and I'd only
had 2 doses anyway), and that I wouldn't have to taper off of them
either, because it hadn't been a long course of the drug. That was why
Tristan blissfully breastfed during the ward round when 3 consultants
and 2 nurses trooped in; he was wearing his "Superbaby" blue velour
suit, which went down well with the staff, who were also impressed with
his size (!)
So we're home now, trying to catch up on sleep and Tristan is feeding
like we've starved him for about 3 weeks. He and I didn't feel well
when he was 6 weeks old and supposed to be having a growth spurt, so I
suspect he's having it now, though he's always been a "hungry baby" and
seems to eat continuously. Mark's mum is flying up to Scotland today
and we are going to have her help until Thursday I believe. We may even
get the house cleaned. Then we will go down to visit Mark's parents,
and his brother and sister (along with her 2 small boys and husband)
will all be there for the Easter weekend. That will be exciting,
because only Mark's sister and Mum have met Tristan so far.
Thank you so much for all your thoughts and good wishes. I hope that I
can really recover now from the pregnancy and birth experience. It is
not nice to be in low-level pain of some kind for 2 months, as I'm sure
that many of you on here will agree with.
Love, Jo in Scotland
P.S. Tristan has started to say "ello" occasionally when we say "Hello"
to him. Can an 8-week old really speak or are we just hearing what we
want to hear?
I am so glad you are home and doing better Jo. I can't even imagine how
happy your guys are! Woohoo. My dh has UC and has for 35+ years. It has
gotten better for him with the better meds and diet control but still is not
good. Any tummy bug can set UC off. Stress sets UC off. He came home from
the hospital with a flare up 3 weeks ago too. For folks that don't know
there really is more too. UC is an auto immune disease and there can be a
lot of joint pain and inflammation. There are a lot of steroids that are
very unpleasant. It is not easy to deal with in many ways. Besides feeling
rotten and lots of meds travel and eating are often problematic. Folks
don't generally talk about UC or Crohns but a lot of people deal with them.
It isn't easy. I hope they figure it all out and come up with a real cure
in our lifetime.
While I don't read anyone's medical details (Thanks for the warning ... I
really appreciated that,) I skimmed this briefly to see you are doing okay
again. Good to hear! I've kept you and family in prayers, and wish you all
the best of health.
Can an 8 wk old infant speak? Yes, certainly! ;) (Who am I to argue with a
new, just out of hospital mom?)
Pat in Virginia
awww, good to hear he is not bothered other than the quantity.
that will build up quicker than you'd think as long as he keeps trying and
from the sound of it he'll be right in there giving it his best.
soon he'll be full up properly.
i used to have a glass of beer in the afternoon to relax me and it makes
good milk i'm told, all those B Vitamins in the beer, if you can cope with
it, of course.
its good Grandma is there for all of you.
i'm sure wee Tristan is having fun teaching yet another adult how to run his
world properly too.
i like the elephant over the parrot too. he remembers how things ought to
done for the wee lad. those parrots can be a pita, its always the same thing
over and over again...
polly want a cracker. i mean who the heck wants crackers when there is all
that lovely milk going for a song.
i'm very happy you're all managing so very well.
hugz all around,
"Jo Gibson" wrote ...
Nothing disrupts Tristan's breastfeeding. The whole house could fall
down and he wouldn't notice. The trouble is, I've been dehydrated, so
I'm not making as much as he would like. This has not pleased HRH
Tristan. Master Tristan is making his likes & dislikes known just now
to Mark, as the baby monitor is letting me know.
Grandma has arrived and shown him the parrot and the elephant on his
"baby gym" and Tristan has decided he prefers the elephant, and Grandma
is okay as well.
-- Jo in Scotland
Glad to hear you've got things sorted and are on the mend.
I bought a copy of "Medication and Mother's Milk" by Thomas Hale, it's
probably the most comprehensive reference to possible affects of
medication on the breastfed baby, so if you ever want me to look
anything up, give me a shout!
Seems like one of the advantages of socialised medicine is costs aren't
just allocated to the person who's ill, I had such a bad case of
mastitis when DS was a baby that I needed IV antibiotics, so they found
somewhere we could both be, in an insurance based system, a breastfed
baby would not be a reason to get a private room! Infection control is a
different issue, but then they let him visit you, so I'm not sure that
makes sense. When I had an allergic reaction back in October and because
it affected my BP, they put me on a cardiac ward and the poor nurses
were rather bemused at me asking them to put my milk in the fridge!
Hi Jo, so very pleased you are back home.
Your milk supply will return - Tristan will make sure it does.
Like J*, I used to have a stubbie of light beer a day when breastfeeding my
daughters, lots and lots of milk and very contented babies.
Hugs for you all.
I'm so glad things have gotten sorted out and that you're reunited
with your family back home, Jo. I hope this is the last little set
back and things move on to great health and happiness. Best wishes to
Kate, I have a brother that mom swore screamed because while she
fed him solids at too an early age she couldn't shovel food in him fast
He is still a HUGE eater. He really at 60 is just gaining a few pounds
more than he should carry. Boy is he a big feeder though.
I can't believe your James is 6'2. Seems like he was just a tyke
I can concur with that! Best of luck for a full and speedy recovery and
a restful holiday with the family.
I swear James said NO at that age! ;) He was a hungry baby and on
solids at 12 weeks. Very frowned on, but... Well, as he's now about
six foot two and very bright, I don't think it did him any long-term harm!
Well we heard a definite "ello" at 6 weeks, we were eating dinner with
family, so it wasn't just us that heard it, iirc he was lieing on a
blanket in a corner rather than in anyones arms so of course we all
turned round, so it seemed to work!
That talker is called Nathanael, who now at age 6 is convinced he's
heard baby sis say his name. She's 10mths tomorrow, doesn't time fly!