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?