Interstitial Cystitis Advice

By Jessica Cangiano

Virtually everyone has experienced some form of abdominal bloating in his or her lifetime. For many women bloating comes part and parcel with menstruation. Yet many ICers experience a distinct swelling of the lower abdomen, which seems to be somehow different from the sort of bloating one might encounter after eating gassy foods or even that which is associated with conditions like IBS.

Your abdomen is tender, sore, perhaps down right painful-it often looks noticeably distended. Touch on or near the area can be excruciating. It comes and goes at seemingly random intervals, but you are no stranger to this peculiar symptom. Little has been written about this phenomenon, so little in fact that I am not aware of any treatment which has been target towards this symptom. But for many of us with IC we know it all too well. What is the name that has been bestowed upon this mysterious symptom? IC belly.

Perhaps the best explanation for why IC belly occurs that I have encountered comes from Dr. Theoharides, a well-known and widely respected expert in the IC field. Essentially the good doctor surmises that IC belly results from an inflammation process.

As inflammation occurs in the body, something called vascular permeability happens. Vascular permeability means that blood vessels dilate (widen/stretch) and begin to ooze or leak fluid, having no place to “escape” to this fluid seeps into the surrounding tissue areas. In response to this the body releases white blood cells (leukocytes) that can create further inflammation. In this theory the excessive fluid given off by these leaking blood vessels could be responsible for IC belly. Fortunately blood vessel dilation (typically) does not last too long. The swelling and inflammation that does occur may happen as a result of nerve endings, specifically those concerned with the pudendal nerve.

Dr. Theoharides feels that inflammation of this nerve (which is located in the spine) can in turn cause bladder inflammation that then causes the nerves to become “hypersensitive”. Creating quite a vicious circle. What is not known for sure is what caused the pudendal nerve inflammation in the first place. If the inflammation of the bladder is reduced, logically the nerve inflammation will also be reduced. One treatment that can help combat this inflammation is an anti-seizure medication called Neurontin (Gabapentin), which helps return the nerves to a more “normal” level, instead of one of hyperactivity or hypersensitivity. Other oral medications such as antidepressants (Elavil, Doxepin) have also been used. More recently researchers have been experimenting (no solid conclusions so far) with drugs that deplete the molecular nerve endings that cause pain, such as “Substance P”.

It is this inflammation of the nerves that Dr. Theoharides believes may be causing the abdomen to swell (become bloated). To directly help combat inflammation, drugs that target mast cell production (inflammation/swelling due caused by abnormal levels of histamines) such as Atarax or Vistaril (Hydroxyzine) can be helpful. What sets Hydroxyzine apart from other antihistamine medications is that it has four special properties. It is an antihistamine firstly, it also has sedating properties, which means it can make your groggy or tired and in turn can reduce night time trips to the bathroom, medically referred to as nocturia, as well as having low levels of anti-anxiety properties. Hydroxyzine is an anticholinergic (meaning it aids in reducing the urge to void) plus it blocks mast production by up to 40%. Not too bad for one little pill. A word of caution, some patients are sensitive to the fillers used in Atarax and may wish to try other brands or the generic form or opt for the Hydroxyzine elixir (watch out though, it contains a small amount of alcohol).

Other ideas include the theory that the IC belly may be happening as a result of a cocktail of symptoms such as of fluid retention, constipation, and fluid moving from inside the blood vessels to the "interstitial" spaces of the abdomen. I will add to the mix, my own idea which is not only is IC belly a result of some form of inflammation process, but that it may actually be a defence mechanism created by our own bodies. Let me briefly explain; as those of us with IC know our bladders are often (if not always) very sore/painful and tender. They are sensitive and prone to high levels of discomfort and pain. Perhaps, the swelling we experience is our body’s way of trying to put a shield between the “delicate”, wounded bladder and the outside world, lest we bump into a table or get hugged too tight and our bladders risk external pressure. The flaw in this theory of mine is that the bloating (swollen tummy) is not pain free it is, itself very painful/uncomfortable, but perhaps that is a by-product of it’s goal to protect the bladder. But like so many aspects of IC this mysterious symptom posses far more questions than it offers answers for, and perhaps only time and research will be able to fully explain why it occurs to so many of us with IC.

Even with these treatments (Neurontin, Atarax, etc) in place many of us with IC still experience belly bloating, hypersensitivity in the area and discomfort. And I don’t mean just a little bloating, like oh my Levi’s are a tad to tight, I mean it can cause you to look several months pregnant, regardless of if you normally have a taught (flat) stomach or a pre-existing belly. For some ICers this only occurs occasionally, perhaps during a flare for others it is an almost daily event, which may last a few minutes or many hours if not all day and may even persist for several days on end. I have found that over the counter anti-bloating medications don’t help at all, which lends itself to Dr. Theoharides’s theory that this is not “run of the mill” bloating or water retention (edema) but indeed the result of something more complex and difficult to pinpoint and treat.

Probably the most helpful thing I have found to reduce the discomfort is to use the trusty ol’ heating pad on a moderate heat setting. Others like to soak in a warm tub or take an over the counter NSAID such as Advil.

I find that even if my weight varies a little the belly remains, it seems to be caused by IC, as even when I just had IBS (in terms of conditions affecting the abdominal area) I did not get as bloated as I do with IC (I still got very bloated though, make no mistake). I am just waiting to have someone ask me how far along I am or if we’ve picked a name yet, because there are days when even the bulkiest sweatshirt does to seem to hide my belly, which seems to spring to life faster then grass on a Chea pet.

When the IC belly strikes, it’s wise to avoid al tight or restricting clothing such as belts, pantyhose with elastic waistbands, under garments designed to “shape”, “flatten” or “reduce”, basically anything that puts undo pressure on your lower stomach area. Instead try light linens or slip on pants or skirts with drawstring or light elastic waists. Dresses and jumpers are another idea. If you’re at home wear a nightgown, over sized shirt or lose pyjamas (you might want to cut the waist band on a pair or two, to have on hand for these days of stomach extension).

Try to avoid activities that would put pressure or strain on your abdomen such as some forms of exercise (absolutely no sit-ups), leaning into a counter, desk or other surface, driving for too long or even being touched in the tummy area. As well lying down, reclining or standing may be more comfortable than sitting.

So if you find that even your loosest clothing seems like a corset and you are looking more pregnant than you actually did when you had your children, know that there is a “name” for this bizarre side-symptom of Interstitial Cystitis; IC belly and many, many of us experience it!