Just diagnosed, so confused and upset

[Kangaroo]

Hi, all. I'm a 37-year old female, just diagnosed with UC 3 weeks ago. I'm so confused because I have no idea what is happening and I'm incredibly scared about my quality of life. I have an infant who takes so much time; I don't know what's going to happen with my own health but I owe my son 100% of my time (and good health). I may end up writing a "novel" in this post despite my best attempts not to do so, so if I do, thank you for your patience and help.

I went to the doctor about a month ago ONLY for rectal bleeding. I had NO other symptoms at all; everything GI and bowel-related for me has been normal my entire life. I had a colonoscopy and the doctor said my biopsy indicated that I have UC. I was SHOCKED because other than the rectal bleeding (which occurred 4-5 times several months ago and then stopped), I had no symptoms to indicate anything could be wrong. I don't particularly care for my doctor, so I'll likely be finding a new one. Frankly, with my terrible insurance and the numerous medical procedures my family has already had this year (we're off to a bad start, medically-speaking), I just can't afford to spend more money on this right now unless I absolutely must.

Here are my initial questions (because my doctor didn't tell me anything):

(1) Did the biopsy test positive for something to diagnose UC, or was it the lack of positive results in other areas that makes the doctor diagnose UC? I know he mentioned I had inflammation during the colonoscopy, but he also said that could have simply been a result of the colonoscopy prep.

(2) Since the colonoscopy, I've had 2 instances of crampy, lower abdominal pains, with and without diarrhea. I have been assuming this is either stress-induced because of the diagnosis or somehow caused by the colonoscopy itself? I had NOTHING like this before the colonoscopy. Could it be UC? Can I go from no symptoms (except bleeding, which hasn't returned) to numerous symptoms, coincidentally, in the weeks after the colonoscopy? Could the prep or procedure have caused this to occur about 10 days later? Is this just how a typical UC case begins when it very first becomes symptomatic?

(3) I was in the ER this past week for what I thought to be food poisoning (but I've not yet been able to get the results of my stool sample). The ER docs hypothesized about food poisoning, UC, gastritis, pancreas problems, gall bladder issues, medicine reaction, etc. The ER docs said my GI doc's on-call doctor was not helpful. I thought it was food poisoning because within a few hours of eating fast food chicken, I was nauseated and sore in my upper stomach. (My UC is lower - sigmoid.) The thought of that sandwich (or any food) made me sicker. I was on the verge of vomiting for hours (but I have really never been one to vomit no matter how bad it is). The soreness turned to pain in my upper stomach. An hour or two later, I started getting diarrhea (but no pain). I had just started taking the Asacol a day prior - I'd had 3 doses.

The ER made no diagnosis because the stool culture labs take several days. I was severely dehydrated (so I had an IV), and they gave me pain meds and anti-nausea meds. My GI doctor finally called me back 2 days later and said (over the phone) that it wasn't the meds so I should take a break then take them again. I REFUSE to take the meds because (1) They might have been the cause, according to the package inserts/side-effects, and (2) I can't afford them. He said this might have been food poisoning but was probably UC.

My question, then, can UC cause stomach/high upper abdominal symptoms like I described? My UC is sigmoid (lower left).

(4) Is Asacol really THAT great? Assuming it wasn't the cause of my 8-hour stay in the ER, it will cost me $550 per month out of pocket. I refuse to pay that much unless I'm desperate.

_________________________
Right now, I feel confused and hopeless. (I have suffered from depression and anxiety my entire life, so reading about UC has really derailed what was progress in that area.) At first I thought the doctor might be wrong in his diagnosis because I haven't had the "typical" symptoms. Then I started thinking maybe it just became symptomatic starting with the rectal bleeding and that my "good" life is soon to be over permanently. I just don't what to think. Please help.

(One last word: I understand that some of you have been suffering for decades and I understand that my situation is not only new but also minor in relation to most others' situations. I certainly don't take my "good" for granted, and I hope nothing I said steps on any toes. I don't mean to complain because I know I have it good right now. I'd be like if someone told me they just got diagnosed with depression and their only symptom was mild anxiety that started last week. I know I'd feel angry/jealous/stand-offish/etc. because I've had bad symptoms (sometimes worse than other times) for as long as I can remember. I'm just so scared and confused, and I have no resources or family/friends who can help me sort this out. THANK YOU for understanding that, truly.)

 

[sickinlk]

kangaroo,
hi im Julie. I was diagnosed with uc 2 years ago after blood in the stool. no other symptoms!
I was diagnosed through a colonoscopy and biopsies. the biopsies show cell changes that point to uc.(crohn's looks different) in Uc changes occur in the membrane of the colon and ulcers and inflamation develop. once stool passes the inflamed area you bleed.
Im sure no doctor worth his salt would give a diagnosis of UC lightly based on just 1 symptom. so id say that your colonoscopy is conclusive.
the stomach virus you're experiencing is most likely a flare and asacol should keep it at bay. those are your maintenance meds now and were most people start the gamut of drugs that are available for us.#
I don't believe that the prep caused the symptoms you are feeling. it was too far apart. like I said most probably a flare.
Uc can cause pain and cramping anywhere in the abdomen and could indicate that your uc is spreading. on the other hand you could very well be sensitive to the ingredients in asacol but there are many to choose from that do the same job. its trail and error im afraid.
on a brighter note, there are numerous alternative treatments and diets you can try if you don't want to go down that route. take a look through the forums. I know a lot of people on here have crohn's but the treatments are very similar.

in my own experience I only had proctitis like yourself and was on asacol for over a year without it making any difference to my bleeding. I came of them in june last year (long story) and went into an almighty flare. 16+ bloody diarrhoea trip to the toilet. so I guess the asacol were doing they're job. they were maintaining me so to speak.

another thing is stress. stress is bad for IBDers so stay calm and avoid the worst case scenario googling. for your childs sake your better following your doctors advise and in the mean time finding another GI you like if that's possible.
a good supportive GI and colorectal nurse is invaluable during this phase of learning.
so is this forum.
feel free to post as much questions as you want.
sorry if I confused you more.
ju

 

[FrancisK7]

Dear Knagaroo,

Welcome to the Forum! Julie has already provided with you with a great reply. You have found the right place to seek answers to your questions, like you we all have this disease and have been through the diagnosis process, so we are in a good position to offer some help

I'll be answering your questions by quoting the numbers directly to make it easier to follow.

1. An IBD can be hinted at with a simple colonoscopy if you find inflammation, but you require a biopsy (usually a few, taken from different places in the GI tract) to confirm whether it is UC or Crohn's. The biopsy is simply a piece of tissue that is then stained with special chemicals that will make the cells in the tissue look magenta/cyan. A pathologist (a doctor who has studied 10 years for this specialty) will then look at the stained tissue under a microscope. This allows the pathologist to see exactly what is going on in your GI tract on a cellular level. This can confirm without any room for any doubt whether an IBD is present, and whether it is Crohn's or UC. As you doctor said, simple inflammation is not enough to get the diagnosis confirmed. If they did a biopsy and found UC, I'm afraid the diagnosis is confirmed.

2. UC evolves in flares. A flare is when the disease decides to go on overdrive for reasons science does not yet understand. Inflammation will be increased because of it, which causes symptoms to aggravate as well. UC is often labeled as a stress disease - enough stress will aggravate symptoms. It's possible the news of the diagnosis coupled with the stress you described was enough to induce a flare. Or a combinations of stress, the colonoscopy prep, etc. It could be a lot of factors, but the thing to remember is, this will happen again in the future, so you'll become very good at identifying pains and symptoms eventually, and knowing which are related to your disease and which aren't normal.

3. The area where pain will be felt is usually tied to your UC and where it is active. Some people have UC only on the left side, transverse, left side, rectum (proctitis) and some have it in the entire colon. I have pancolitis (my entire colon is affected) and I certainly can get severe epigastric pains at times. Even if the pain doesn't come from the stomach directly, it can radiate there.

4. Asacol is good, yes. Millions of people take it. To better understand its efficacy, you have to understand the various treatment options available. There is a protocol for treating IBD, and there's a ladder with a new, more efficient treatment on each step. Most GI will start at the bottom of the ladder, and work their way up if one approach fails. Asacol is a 5-ASA and part of the first step. They are:

1. Targeted anti-inflammatory medication (5-ASA/Mesalazine/Pentasa)
2. Immunosupressive therapy (Imuran, Himura, 6MP)
3. Biological therapy (Remicade)
4. Surgery (removal of the affected part of the colon)

A course of steroids (prednisone) can be added at anytime to a treatment to address a particularly aggressive flare. Many people will take 5-ASA all their life to keep the UC in remission and whenever a flare occurs, a short course of pred will handle the problem.

You also have to differentiate palliative treatments over treatments that actually treat the disease. Your disease is caused by a misconfigured immune system. A defective gene in your DNA caused a mutation which resulted in your immune system misidentifying necessary and friendly bacteria as foreign. And while UC is physiologically active in the GI tract only, it can cause other auto-immune problems, such as arthritic pains.

5-ASA medication given to UC patients is targeted medication that only activates once in your GI tract, so it is effective at reducing inflammation locally, which in turn gives your GI tract a break. Remember that the goal of any UC treatment is to put the disease in remission as fast as possible, and keep it in remission for as long as possible. Some remissions can last for years.

Pharmacology is not the only option. If you radically change your diet, you MAY see signs of improvement. Many UC patients that have tried pharmacology and failed to treat the disease switched to the paleolithic diet (no dairy products, no grain, gluten, etc.) and have had great results. If your case of UC is mild (as it appears to be the case here) a change in diet and lifestyle might be enough to treat your condition. There is also nicotine and medical marijuana, which can treat the inflammatory cascade too. Both Julie and I have been using marijuana with great efficacy to treat our UC.

Your UC is obviously mild for the time being, but you do have it, so my suggestion to you, if you don't want to take pills or cannot afford them, is to make immediate changes in your diet and lifestyle that will directly affect you.

1. Avoid stress as much as possible. This is a given for most human beings, but for us with UC, this is much more important.
2. Sleep 8 hours or more a day. Cellular repairs are more effective while we sleep, the body needs its rest, and modern imagery has proven there is a physiological response to prolonged sleep deprivation. Neurons don't have time to regenerate fully unless the brain gets 8 hours of sleep, so aim for 8 as much as possible.
3. Avoid all irritants, such as caffeine, alcohol, etc.
4. Avoid grain, dairy products while you flare
5. Avoid fibre (which means no uncooked fruit, no uncooked vegetable, no wholegrain or whole wheat bread, etc.)

These are all things that can give your bowel a break and help. If these do not suffice, you will have to take the Asacol and see if it helps.

I hope this helps you. If you have more questions, please don't hesitate to ask.

 

[FrancisK7]

And for the love of God, Gods, Lords of Kobol or whatever diety you may believe in, as Julie said, DO NOT GOOGLE WORSE CASE SCENARIOS.

A lot of the literature and statistics being provided on IBD nowadays are based on studies made before biologicals existed, and before modern immunosupressive therapy. They are not really indicative of the portrait of reality.

Millions of folks live a happy, normal life with an IBD and all it takes is a a pill or some changes in diet. Do know you will be able to remain a good mother and that once you find a treatment that works for you, your chances of living a fulfilling life are much higher than things going horribly wrong.

 

[sickinlk]

well said francis,
tell my again why you gave up medicine.
ju

 

[Kangaroo]

Thank you both for some really great information. I have so much to learn. My doctor emphasized several times that stress is my worst enemy, and I definitely believe that. Thinking back through my life, I did have one rough time during the late 90's that lasted several months. I was going through significant stress then, and I thought I was just stressing out my digestive system. Looking back, my symptoms certainly might have been UC, even then? Unfortunately, right now is a very stressful time in my life for reasons out of my control.

I want to look into alternative treatments too. I take meds when they are absolutely necessary, but I really don't like them. Here's a question: IF I find some things that work that aren't meds (or if my UC is mild enough to deal with it without meds), will I risk significant damage or worse symptoms later if I don't take the meds? What I mean is, will not taking meds (if I don't need them) make my UC worse later?

Well, thanks again! I appreciate the help.

 

[sickinlk]

heres a link for a site that goes through all treatment alternative, natural or pharmaceutical.
one passage in particular reads
If left untreated, people with ulcerative colitis can develop a wide range of chronic, sometimes dangerous complications. Fortunately, however, most of these complications can be treated successfully.

•Hemorrhage (excessive bleeding)
•Perforation of the colon
•Narrowing of the colon, which may cause obstruction
•Abscesses
•Toxic megacolon (grossly swollen colon that may rupture)
•Colon cancer
•Nutritional problems (including weight loss and reduced muscle mass)
•Joint pain and arthritis
•Eye infections/inflammation
•Mouth ulcers
•Liver damage
•Blood clots
•Depression and anxiety

Although there is no cure for ulcerative colitis other than surgical removal of the colon, many people with the disease lead active lives by controlling their symptoms with medication. In fact, drug treatment is effective for about 70 - 80% of all people with the condition. About 45% of all people with ulcerative colitis are free of symptoms at any given time, but most have at least one relapse in any 10 year period


Source: http://www.umm.edu/altmed/articles/ulcerative-colitis-000166.htm#ixzz2LoDJ1RFZ

ju

 

[Kinsey]

This forum will help

I am still new her myself, my son, 18 has the Crohn's. I found the most helpful information here and also some of what I was learning got reinforced here. the link or "forums" whatever, on certain topics can impact the way you get treated, do for yourself. I don't want to give advice but I can't emphasize enough to check out as many topics as possible to not miss anything. I've really become addicted to this support! Hope you do as well. May God Bless you. Kinsey:dance:

 

[jwfoise]

Hi kangeroo,

I've had my UC diagnosed for about 10 years, though I probably had a lot longer. Mine is pretty well managed with Asacol. Like others have said, UC is very episodic and like you, my big trigger is stress. I have to believe that having an infant is by itself a big stress.

I've also had very good luck using a probiotic with the Asacol; adding the probiotic was a huge help. I worked with my doctor on that. You and your doctor might want to consider that in your treatment.

Good luck and remember you have a lot of fellow travelers here. As they say: DON'T PANIC (in large friendly letters).

 

[modestrachel]

Its funny, I never had any of the upper tract symptoms that I have read about, before my surgery. I remember doctors asking me about nausea or throwing up, but it was all just on the low end. You know, I was diagnosed around my tenth birthday (1991-1992), but they first thought I had HIV! Then they thought maybe I just had a lactose intolerance and then a colonoscopy, which I remember all to well, led them to diagnose me with Ulcerative Colitis. Even as kid the diagnostic process was hard, I suspect even more so for my parents.

 

[Ya noy]

well said francis,
tell my again why you gave up medicine.
ju

As memory serves, it was because the Lords of Kobol demanded it as their sacrifice, or they would have released the Kracken.

 

[sickinlk]

:rof:
:rof:
:rof:

 

[KiwiSharl]

Hi Kangaroo,
My original diagnosis came as a shock just like yours and i too was in denial and fear. Stress def is your worst enemy. I am a qual Naturopath and I have had to change my attitude to drugs... we need them. BUT there is a heap you can do naturally as well. For you I would recommend you take some time each day to do some relaxation breathing to help calm your nervous system, I really found Paul McKenna's "Change your LIfe in 7 days" Book & CD really helpful for getting me into a positive state of mind conducive to healing. I would listen to the "NLP/Mind programming" CD each night as i went to sleep. it seemed to really help shift me out of the fear trap. I find a "nervine" blend that works for you, I would recommend finding yourself a Metagenics Natural medicine practitioner, these guys are properly trained on drug interactions and can check safety against any other meds you are taking, and have a more "science" like angle to their natural medicine. (Dont just go buy something from your pharmacy!) I find a combination of herbs called Rhemannia and Valerian is very good when Im stressed it will stop me from flaring. Sugar is your enemy also. cut it out. Take a probiotic called Lactobacillus Plantarum. this is very good for IBS and Inflammatory Bowel Disease, it seems to help with inflammation. Another soothing thing is Slippery Elm Bark, 1tsp stirred into some yoghurt, or water/juice will help heal your ulcers and provide prebiotics (food source/gentle fibre) for the probiotics (good bugs) to adhere and multiply in the bowel. A pure fish oil like MetaPure EPA/DHA at 5grams per day also helps to lower inflammatory cytokines and can help reduce inflammation and let your bowel heal. I find reducing red meat during a flare helps. Check out the Low Fodmap diet & Specific Carbohydrate Diet also as some people swear by this.
All the best for a speedy recovery. I hope I've given you some hope xx

 

[Kangaroo]

A big THANK YOU to everyone who has responded. You've all provided me with excellent information, and I definitely feel more prepared to discuss this with my new doctor. My current/former doctor didn't explain anything to me - he just said "You have ulcerative colitis, here are some medication samples, and here are two prescriptions. Avoid stress. I'll see you back in 6 months." That is almost word-for-word as to how it went. I left there essentially thinking this was no big deal because I had never heard of UC; I assumed it was empty doctor jargon for general, undiagnosed inflammation. I thought it would just go away. I realize now that this is serious and chronic, and my doctor and I will be in this together for some infinite time. Therefore, I need a good doctor. Hope everyone is doing well today, this week, this month, etc. etc.

 

[jwfoise]

A big THANK YOU to everyone who has responded. You've all provided me with excellent information, and I definitely feel more prepared to discuss this with my new doctor. My current/former doctor didn't explain anything to me - he just said "You have ulcerative colitis, here are some medication samples, and here are two prescriptions. Avoid stress. I'll see you back in 6 months." That is almost word-for-word as to how it went. I left there essentially thinking this was no big deal because I had never heard of UC; I assumed it was empty doctor jargon for general, undiagnosed inflammation. I thought it would just go away. I realize now that this is serious and chronic, and my doctor and I will be in this together for some infinite time. Therefore, I need a good doctor. Hope everyone is doing well today, this week, this month, etc. etc.

If that was all my doctor said to me, I would be finding a new doctor. As you say, you are in for the long-haul, find someone you like and can work with. Is this doctor a gastroenterologist or just Internal Medicine, or some other sort of generalist? If so, I'd suggest finding an gastroenterologist.

 

[FrancisK7]

I agree with jwfoise. Your GI sucks.

If you can find a new one, I'd do it. I switched when I didn't like mine, and my new one is FANTASTIC.

It's worth doing the research!