Hi! I was diagnosed with Ulcerative Colitis 2 months ago, just 1 week before my 30th birthday.
Talk about timing! March this year is when everything went pear-shaped…I got my tonsils removed due to years of tonsillitis and constant antibiotics, then 3 days later hemorrhaged, was rushed to ER via ambulance for emergency surgery, then ended up chocking and swallowing the packing tape they had stitched in my cavities to avoid another bleed. For the next 2 months they pumped me with large doses of antibiotics first to avoid infection, and then when my UC symptoms started to appear, they would give me more and more antibiotics. At the same time I was taking very strong pain killers from the tonsil surgery which in turn caused severe constipation for 3 weeks. So basically the antibiotics they were pumping into me were sitting in my gut and not able to get out! Strangely for me, my UC symptoms started all in the upper half rather than down below. I first started t o feel a strange ‘lump in the throat’ feeling, then got wheezy and starting having terrible coughing fits, then started to have reflux so bad that I would reflux up large amounts of blood, then a severe, constant cramping pain underneath my rib cage. Each doctor would have a different opinion, eg: ‘you’ve got reactive airways from the surgery, here’s a script for prednisolone…(found out quickly I’m allergic to it!) another: ‘you’ve got severe GERD, take gaviscon, zantac and somac and have an endoscopy…and you might as well have some antibiotics also’ (endoscopy came back clear except the valve between my stomach and esophegous was a bit loose. The verdict? ‘as well as all the proton pumps meds and antacids that you’re taking, here’s a script for mitillium as well…and take more antibiotics!’ none of the medications were helping the reflux and the pain behind my right rib was getting worse. All I could eat was chicken, fish, pumpkin, carrots, rice and potatoes. More tests and scans were done for suspected gallstones, pancreas inflammation, liver problems…all came back clear. Saw a new gastroenterologist who was convinced the packing tape I had swallowed in march after surgery had not dissolved and was stuck in my small intestines so booked me in for an endoscopy. He thought he might as well do a colonoscopy while he was at it. It was only during the two week wait for these procedures that I started to get severe diarrhea, blood and mucus. I thought I was dying, I had dropped from 70kg to 55kg, was in bed from weakness and unable to care for my beautiful 2 year old boy, Jonah. My husband and mum have both been so supportive during this time!
Gastroenterologist didn’t find anything abnormal with endoscopy but was completely shocked when he did the colonoscopy! Apparently my whole lower bowel is completely covered from top to bottom with ulcers! He put me straight on sulfasalazine which started to work within 3 days but unfortunately got a nasty reaction to it (rash all over body, kidney function poor and immune system got really low) so now I am on 4000mg mesalazine a day. Funnily enough, this has helped heaps with my reflux and I am no longer taking any of the reflux meds. However, when I do flare up, the severe reflux including blood comes back! Strange…
I have tried the SCD quite a few times but unfortunately the 24 hr homemade dry curd cheese causes a flare, as does the SCD chicken stock (maybe the onions in it, even though it’s well strained?) and also the almond flour in the muffins…. ANYTHING I eat apart from chicken, fish, and root veggies causes a flair…I am so sorry this is such a long post, I didn’t realize how much venting I had in me!!! I am going in for another colonoscopy tomorrow for further biopsy/tests as gastroenterologist thinks I might have something else going in there apart from the UC such as an infection or something.
I’ve got so many questions because I keep hearing conflicting information from different specialists and doctors. My gastroenterologist had told me on initial diagnosis that with UC there are no short or long term side effects of mesalazine and that I can eat whatever I want. Yeah right! food is a major cause of my flares as it looks as though for so many other people who have posted on this site.
I guess my main questions are has anyone:
1) Taken large amounts of antibiotics and then been diagnosed with UC?
2) Have or had reflex problems with their UC?
3) Know of other foods that are gentle on the intestines and are not likely to cause a flare?
4) Taking mesalazine and notice shortly after taking their dose they feel a bit spaced out or vague and heart rate drops? Mine gets in the low 50s then after a few hours gets back up again
Once again I am so sorry for the above blabbering! I hope that everyone is having a wonderful and hopefully flare free day today!
Mesalazine 4000mg p/d
Allergic to Prednisolone and Sulfalazine
Submitted by Davina in the Colitis Venting Area
Some Previous Colitis Stories that Based on the Above Questions: