Newly diagnosed with LC and questions about pain

[balentine522]

I am new here and was diagnosed with LC last month after 5 years and 4 GI doctors. I have constant diarrhea and nothing but Lomotil really helps and I have to take the max dose (6 pills a day) to be diarrhea free. I am glad to have a diagnosis finally as I was told for years that I just had IBS and I was just going to have to learn to live with it. I have to take Potassium supplement every day just to keep my potassium levels at 3.0 (normal is 3.0 - 5.0) because of all the potty trotts. I am so very depressed and tired of all this. I tried Entocort (which by the way I had to take out a small loan to pay for) for 2 weeks and had to stop it because I am apparently allergic to it.

My main question is about pain. My GI doc says it is unusual to be in the amount of pain I am always in. It feels like my colon is turning inside out and then there is a constant dull ache on the left side of my colon. I have stopped letting her give me pain meds because I don't want to rely on them too much but the pain can be unbearable at times. Is anyone here in that much pain? or is my GI right in saying that I shouldn't be in this much pain with LC?

Thank you for taking the time to read this and I am thankful to have found this message board.

Crystal

[beni]

I too have LC and have pain, I am on endocort (9mg, have been for months, the D has gone except for an odd time when I eat the wrong thing, I have been gluten free for weeks and sometimes I am pain free but usally ,as now I have some bloating and pain also an ache on the lower left which is my divertculosis grumbling, I too am really fed up with it, I could blame the diet but the fact that I am ok sometimes puzzles me what pain meds do you take, do they work?The only thing that I use is imoGas after each meal, that helps with the bloating, sorry I cant help either you or me, but at least you know you are not alone, my GI also said it is unusual to have pain and ordered a full abdomonal scan, all normal, with me it links to bloating I think, so I suppose it must be something I eat, hopeTex reads our mail, he is such a wizzard he will point us in the right direction, keep well Beni

[Deb]

I had considerable cramping pain when I was reacting. Fortunately it went away as my symptoms improved. I also have some diverticulitis which seems to have improved since I've changed my diet. Now, if I eat something that doesn't agree with me I tend to get a little cramping but not usually D. From what I've read here I think pain is pretty common.

[tex]

Hi Crystal,

Welcome to our internet family. Yes, as Beni and Deb mentioned, your GI doc is wrong. Pain is very common with this disease - not only abdominal pain and occasional cramps, but muscle and joint pain, backaches, headaches, migraines, etc. Many of us feel as though we have a severe case of the flu when we are reacting, including extreme fatigue and brain fog. Quite a few of us cannot take Entocort, because of side effects or adverse reactions. There are other anti-inflammatory medications that can be taken, but many of us prefer to control our symptoms by diet changes, because for most of us, the source of the inflammation that causes the symptoms is certain foods that we have become sensitive to, and which now cause us to have an autoimmune reaction. Also, many patients find that drugs alone are not sufficient to control their symptoms, so they have to make diet changes as well, in order to achieve remission.

LC cannot be cured, but the symptoms can definitely be controlled - you can get your life back, if you are willing to take control of your treatment. Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[sarkin]

Welcome, Crystal, and I hope your symptoms will soon get dampened down as you begin to wrestle the MC beast into submission.

I most certainly had pain as well, sometimes frighteningly so. And Tex, interestingly, whatever my minor setback was this week also came with headaches, back twinges, and significant right-hand pain (I had forgotten all about that). Based on the experience you recently shared, I'm more persuaded than ever that casein was involved, though I still haven't figured out the source. (No brain fog, anxiety or confusion though - which in my mind lets gluten off the hook.)

Crystal, if you haven't already started eliminating gluten and all dairy from your diet, I highly recommend giving it a try. As much as that can be a big adjustment, it's a whole lot easier than dehydration and being chained to the bathroom. Lots of good info here about how to start down that path.

Wishing you health and healing,

Sara

[beni]

been reading the replies, as usual Tex you explain things very well, showed my husband and it helped him undestand the SYNDROME!!!!! quote (a set of symptoms occurring together) so why if IBS is irritable bowel syndrome why is Microscopic Colitis not microscopic colitis syndrome, seems like a lot of us get more than D. Beni

[Lesley]

Good question!
Just as good as asking those docs who dx IBS why they don't know about the horrible pain that comes with MC, or that MC can be controlled by changing the diet.

[tex]

so why if IBS is irritable bowel syndrome why is Microscopic Colitis not microscopic colitis syndrome, seems like a lot of us get more than D

Actually, it is a syndrome, and gastroenterologists who understand the disease, (such as Dr. Fine), do refer to it as a syndrome. The reason why most doctors don't make that connection, is because MC was not correctly described, originally, and most doctors have never adequately updated their working knowledge of the disease, after reading the original description. Originally, it was described as benign disease, characterized by watery diarrhea, and a colonic mucosal surface that appears normal to the unaided eye, but which exhibits certain microscopic changes when viewed under a microscope. Pain was not mentioned, nor were any of the other common clinical symptoms that many of us have to deal with.

The reason why they refer to IBS as a syndrome, is because it actually doesn't exist - it's just a collection of symptoms that they can't attribute to any other disease, so they call it "irritable bowel syndrome", so that they don't have to admit to the patient that they don't have the foggiest idea what's wrong with them.

Tex

[draperygoddess]

I think sometimes the pain is worse during times of extreme stress. Over the past few years, even when I wasn't having other symptoms, I had belly pain on a daily basis. On the up side, it is much less frequent now that I've changed my diet and stopped taking Zoloft.

Crystal, don't lose hope! I know how discouraging this can be, but you will get better! We're pulling for you!

[Gabes-Apg]

Cramping pain has been a symptom for me my whole life. (i have defects to the bowel and have had 3 x sugery for bowel contusions before age 25)

when my body has been under physical and mental pressure, regardless of what i ihave eaten or not eaten, i get sharp cramping pains. most of my friends that have had babies say that at its worse, i have having the equivalent of birthing contractions

my best solution is rest and easy to digest foods (low inflammation ingredients mashed up like baby food) If i rest and take it easy then in most cases 24 hours later it will be gone.

Due to some medical stuff over the past 3 months, 95% of my meals have been low inflammation meals in this time, and i have not had any cramping pain. When i am tired, I rest. I dont try and push through. (hence why my windows are dirty, and the shelves need dusting)

hope this helps

[draperygoddess]

Gabes,

Good for you! Not many of us are smart enough to listen when our bodies are begging for rest (myself included). We could learn from your example--and probably be sick much less often!

[Noodler]

I find that pain is leagues ahead of my other symptoms. I can have some control over my D and daily motions but the pain, motility problems and bloating are the most debilitating results of having Lymphocytic Entero-colitis. I have pain high up on the right side and have had a lot of gall-bladder imaging. Biopsy showed I had really high level lymphocytic duodenosis. I've been gluten-free for 3 months with definite benefits but slipped up 2 days ago when i ate some potato crisps that had gluten in them. I've been awful today. Poleaxed with pain. I also seem to get steatorrhoea with fat globules being passed. Very unpleasant.

The medical fraternity should, as a paramount priority, reclassify this disease (which has had 35-40 years of scrutiny since first described) and they should make pain one of the cardinal indicators.

If anyone has advice on pain control, particularly medications that work as well as diet mods, I would be very grateful.

Al

[tex]

Al,

With that much inflammation in your duodenum, you might be a celiac who's disease just hasn't yet matured enough to be detected by the classic celiac blood tests. I suppose it's a moot point, though, since the dietary treatment for MC will also cover celiac disease.

Most of us are also sensitive to dairy products, (dairy protein, casein), so it's possible that if you're still eating any dairy products, that might be the source of your lingering symptoms - dairy is notorious for causing bloating and motility problems.

Acetaminophen is one of the few pain-killers that we can take, that won't trigger an MC reaction. Of course, narcotic type painkillers will work, but since they also slow down motility, one has to be careful about a risk of developing an impaction, in the event they are used regularly. I found that acetaminophen worked best for me, if I took it with a meal, before the pain reached major levels.

Pain was a major problem for me, too, whenever I was reacting. On the worst days, when everything was hurting, even my hair seemed to hurt.

Tex

[Wren]

Welcome Crystal,

I also had/have a lot of pain associated with the LC. The small of my back hurt like the dickens and I just couldn't/can't get comfortable. Hurts to sit; hurts to stand. Since I also have sciatica, on the days I was flaring (which was just about every day until quite recently) I wasn't exactly on the best of terms with the rest of the world.

My GP told me once when I was asking what I could take for the fibromyalgia joint aches. "Pain is good for you. It proves you are still alive." Needless to say, if I ever need serious pain management I shall have to look elsewhere...

As your innards heal, it will get better. (I did for me, anyway.) Don't give up, Crystal.