The Gut also comes on the Journey of UCTD

A while back I wrote about allergies and their impact on the gastrointestinal tract. It links in right here as the gut does not get left behind but demands its own compartment in this Journey of UCTD. All the things that happen due to food allergies can happen here as well. If you intend to feel upset about the graphics descriptions of the effects may be this blog is best left unread.

Well the gut can get inflamed as a result of the autoimmune disease. The gastrointestinal tract is made of involuntary muscles. From my earlier blogs you must have sussed that my muscles have been affected by this disease and so is it surprising that I am having GI symptoms too?  Now the first time I ready ever thought about the impact was when I had difficulty in swallowing. I found that it took a bit too long for that well chewed morsel of food to actually pass down the throat. In fact, I could actually feel it slide slowly and often painfully down the oesophagus. This was particularly noticeable when the drink was very cold or hot. Sometimes it felt as if the bolus had stopped in transit and I was thumping my chest to get it moving. As if the blocked pipes get unblocked with a thump? But when your eyes are watering due to the pain and your breath stops, you try even the silliest thing. This was making me feel reluctant to eat and drink. This does not bode well for the body that is being pumped with ibuprofen and bouts of steroids. 

The other thing that happened during this time was a tendency to get constipated. Was this due to lack of adequate fluids and fibre?  Well, I told my rheumatologist and GP about this and next thing I know I am being trotted off to the gastroenterologist. He is not ready to discuss differential diagnosis at this point but suggests that we can go for a gastroscopy and see what is happening. It would help to visualise the state of the mucosa, biopsy the walls and check for coeliac disease. He opined that all my problems could be just part of coeliac disease. So I agreed to undergo this investigation. 

When you get a date with the scope there is some preparation for it. Not as extensive as scoping the other end but still, a nil by mouth overnight. I could take my pills with very little water at 6 am as I was due to be on the table at 10 am. I had an option to be sedated or not for the procedure. Having chatted about this with a friend, I was told it was better not to be sedated as you can help by voluntarily swallowing when the scope was being introduced. Well hindsight is always 20 / 20 and I will never advice anyone to refuse sedation. In fact I would have been very happy if I had been anaesthetised for it. 

I do not think I was totally relaxed as when that mouth guard is inserted you suddenly realise it is hard to swallow with your mouth open. You are lying on your side facing away from the TV screen. I am even denied that small entertainment. Then the gastroenterologist (one who I had never met before) says I am going to spray some local anaesthetic to help numb the mucus membranes. No one tell you that it stings like hell before the numbing can take place. Also that numbing does not mean total loss of sensation. I have been at the other end of this scoping business and remember telling the patient its ok, it is a small scope and fairly thin. But on the receiving end it seems to be more like a drainpipe! Needless to say that this was one procedure that had me sobbing and I wished I was asleep through it. I wanted to yell – I am trying and what do you think I am doing? When the nurse / doctor kept saying swallow, a bit more…. 

I think it only lasted about 30 mins and that’s how long eternity was, for me. I was asked to get dressed and wait outside while the nurse rang my husband and asked him to collect me. If I was hoping for some sympathy, it was in short supply as he was working nights and had to come get me in the middle of his sleep. My throat was sore for a few days. The initial report was that the gut looked good especially considering the hefty doses of ibuprofen being pumped in daily. A couple of weeks later the gastroenterologist told me that coeliac disease has been ruled out after all.

During this waiting period I had developed anaemia and also diarrhoea which can be attributed to the ibuprofen, reduced vitamin B 12 and also the new medication of hydroxychloroquin (Plaquneil). 

  The alternative reason of diarrhoea also related to the food allergies, particularly since some days my husband worked 12 hour shifts, we relied on frozen meals. I was given Vitamin B12 injections and you may have already read my saga about taking iron. I wish one could just lick some rust off the nails. The issue of this being a side effect of plaquenil was very real and dealt with by antihistamine. Actually I needed the antihistamine for the rash that I got after starting plaquenil, and noticed that it helped to control the diarrhoea too. 

So when I saw the gastroenterologist for the results of my gastroscopy, he was concerned about the low Hb and diarrhoea. Since he did not find anything in the upper GI tract, he wanted to do a colonoscopy. His explanation was we just might find the reason for your illness; maybe you have a bleed somewhere which is causing your anaemia, may be you are not absorbing the nutrients as you should. But naturally I will not be absorbing nutrients if I am having the runs. I do not see any blood fresh or otherwise to indicate any bleeds. I think I shocked the young registrar by refusing to get a colonoscopy done on a whim or a vague idea that this might just provide us with a diagnosis. I said I would prefer to wait and see how I respond to the Vitamin B12 injections, iron and antihistamines before I decide to opt for colonoscopy. 

Part of the decision was based on the fact that I had a poor experience of gastroscopy and did not relish the idea of being awake through yet another invasive investigative procedure which might turn out to be just a fishing expedition for the lads. Since then I have had iron injections too and my ferritin levels are back to normal. I am careful in what I eat to ensure I keep allergic reactions to a minimum and having cetirizine / zyrtec daily keeps the side effects dampened down.

Since I have got stabilised, well sort of, I have noticed that just as with other organ systems I tend to have cycles for the GI tract too. I get periods of normal, then slowing of the gut movement when I can have swallowing difficulty, feeling full and slow stomach emptying to being constipated. Then the pendulum swings back and everything speeds up. I do feel a bit hungrier as the stomach empties quicker. I also tend to have a bit of diarrhoea on the days I have to take methotrexate but it is all mostly manageable. So result – no one has asked me to go for a colonoscopy!