Worried and looking for information

I found this forum while looking for information on my symptoms. I don’t know what is wrong with me yet and I have my first appointment with the gastroenterologist on April 21st. I have read a lot about different causes of colitis but my symptoms don’t seem to fit into any one category. I would appreciate any feedback people could give me. I apologize in advance about the length of this post and the description of my symptoms but I don’t know how else to explain what I have experienced.

I’m a 42 y.o. female with no known family history of IBD (don’t know much about my father and his side of the family). First bout of colitis occurred in May 2010. It was a normal evening at home but all of a sudden I got terrible abdominal pains like I needed to have a BM. Along with the pain was gurgling noises. Even though I tried, I could not have a BM for about 2 hours. When I finally did it started out looking normal and quickly turned into explosive diarrhea. I had about 3 diarrhea episodes over the next hour and then it turned into bloody diarrhea. I was passing blood and pus (not sure what it was but it looked white) about once every hour for another 10 hours along with severe gurgling noises and abdominal pain. Finally went to urgent care at this point. They took a stool sample and blood samples. Put me on an antibiotic because the doc suspected an infection of some sort. When the stool test came back it was positive for C. Diff. After being on the antibiotics for 24 hours my symptoms went away and I thought it was the end of it.

In January 2011 was out to dinner with my husband and started feeling the same type of symptoms I had in May, gurgling and abdominal pain. Went home, wanted to have a BM but couldn’t. Eventually passed stool which turned into diarrhea then bloody diarrhea. This went on all night, again passing blood and what I think was pus about every hour. Went to urgent care in the morning. I told them about the bout in May so they suspected C. Diff again. Took blood samples and stool sample and put me on antibiotic again. Within 24 hours of starting antibiotic my symptoms went away. This time the stool sample came back negative for C. Diff. My doctor said that I had an infection of some sort they just didn’t know what it was. She said having this happen twice in less than a year could be a coincidence but if it happened again she would send me to GI doc.

About 8 weeks later I had another bout. Same onset and symptoms as both times before. Went to urgent care yet again, told them my history. They took blood and wanted a stool sample but I couldn’t give one because my bm’s just stopped – nothing for 4 days. The urgent care doc had put me on antibiotics again so they said forget the stool sample, it wouldn’t be useful since I was on antibiotics for 4 days before I could provide one. At this point my regular doc said she didn’t think this was a coincidence anymore and put in a referral for the GI specialist and a colonoscopy.

Now that I have done some research on colitis I can see I have other symptoms over the past few months that may or may not be related. The others are:
-change in bowel habits – went from normal bm’s without straining to feeling of constipation, straining, and passing hard round stool when I finally do go.
-feeling of fullness/bloat in abdomen on the right side and sometimes lower center of abdomen near rectum
-feeling like I need to have a bm but can’t
-mucus when having a bm
-hip and knee pain
-fatigue

I’m stressed about this because I don’t know what is wrong with me and I’m really afraid of having another bout while we are out of state for my son’s college graduation in mid-May. I am hoping for some answers before then but after reading the posts here I suspect it may take much longer to get a diagnosis.

It seems like my symptoms are somewhat similar to UC but is it possible this is a recurring bacterial infection? How/why would I keep getting an infection like this?

Thanks for your time reading this.

You are doing the right thing meeting with a GI. Mucus and blood is never a good sign and is often associated with IBD. Before meeting with your GI, I have a few suggestions for you:

1. Do your homework on IBD so you will have some background knowledge when speaking with your GI (the forum is a great place for info)
2. Keep a daily log of what you eat, BM's, and joint pain. This will help give your GI firm evidence of how you have been feeling and may help you see if there is any pattern.
3. From my experience, a colonoscopy is the best way to see what is going on. Your GI will most likely want to do testing and he may suggest starting with image testing (lower bowel series, CAT scan, etc.). But you will most likely need colonoscopy after anyways. So, though the prep can be awful, I suggest not playing around and just go for the colonoscopy up front. But, of course, this is just my opinion.

I hope this helps. I wish you luck on the 21st, and please be sure to tell us how it goes.

Hi Bookworm

I can see why you are stressed about your current state. IT can definitely be distressing when experiencing the symptoms you mention, but then waiting for an appointment that seems so far away that will give you more insight as to what is going on is even worse!

I don't know much about UC as it compares to Crohn's, but I would tend to think you probably have something going on other than a recurring infection. But, I am no doctor.

I know this is easier said than done, but if it's possible to do some relaxing exercises/activities until your appointment, it may help. I know for Crohn's, stress can cause an upsurge in symptoms. I can only imagine it would work the same for UC. IF you find it difficult to relax, maybe talking with a counselor or temporarily taking some anxiety meds might help too. Again, I know it's not easy to relax when things are so uncertain at this point.

Doing lots of research seemed to help me with the fear and anxiety of an impending diagnosis too. I learned so much from this forum when I was first diagnosed. It helped coming here and talking with people who had been where I was and could offer advice.

You may want to alter your diet in the meantime. You may find it will help some of your symptoms until you can see your doctor and get on proper medications. Hopefully, it will help ease your mind too while away on vacation. Here are a couple sites I found that talk about diet if you have ulcerative collitis. You can also find many threads on here too, I'm sure.

http://www.webmd.com/ibd-crohns-disease/ulcerative-colitis/creating-an-ulcerative-colitis-plan

http://www.mayoclinic.com/health/ulcerative-colitis/DS00598/DSECTION=lifestyle-and-home-remedies

You may find, in general, a low fiber diet should ease some of the gut symptoms you are experiencing. Keep a journal of what you eat and how much. I did this for almost a year after I was diagnosed. It really helped me pinpoint what foods caused me trouble and whether I could eat certain foods, but not eat them more than one day in a row.

Good luck! I know it's a lot to take in.

Hi Bookworm
Happy you joined the forum there is tons of info on here. Hopefully the GI will get you under control so you don't have to be fear-full anymore.

Hi I read what you wrote and it is dead on with everything I went through, miss diagnosed, then bouts of diahreaha, fatigue, anemia, put me on antibitoics didnt help then mri, then colonoscopy and upper GI and sure enough...Crohns. It is scary and frustrating. The hard part for me is fatigue, its horrible and I have 2 kids, so its getting in the way of doing what i want with my family. But everyone here seems so nice, so you have info and encouragement here.

I appreciate the feedback. It helps to have somewhere to discuss this with people who understand. My husband is sympathtic but can't relate. I have not told my sons much since I don't think they want to hear about my bathroom problems.

I looked at the information on diets and I find it interesting that for UC they recommend avoiding high fiber foods. I would have thought the opposite was true. In fact, just last night my husband suggested I might need more fiber! I'm going to start journaling my food, pain, etc today and I'm going to start a list of questions for my appointment.

I'm just happy to have the consult appointment April 21st because initially they couldn't get me in until May 9th! They had a cancellation so they moved me up. I wish I could go ahead and schedule the colonoscopy too but they are making me wait until I talk to the doctor.

I'm starting to think the diagnosis of C. Diff back in May was in addition to whatever else is going on. Kind of like a (nasty) bonus.

One symptom I don't have is weight loss although I could stand to lose a few (or 50) pounds.

Social Me - so you had similiar symptoms and you have Crohn's instead of UC? I guess I have to consider that being a possibility too. I was thinking UC instead of Crohn's because many websites say the bleeding and left side pain are typical of UC. Not to be nosy but did you have bleeding as well?

Hi Bookworm and welcome!

I suggest you need to see a GI doctor and glad you have an appt for just a couple weeks. A colonoscopy, or at the least a flexible sigmoidoscopy would be a good place to start to see what's going on in there.

Good luck with the appt! Keep us posted. In the meantime, you may want to stick to a low res diet - no raw fruits or veggies, easy to digest foods.

- Amy

Hi,
Welcome to the forum. I'm glad you're finally going to a GI - stay away from the urgent care - unless you break a bone . A specialist is definately needed. I hope the appt works out and you get some answers. Many of us here have had Crohn's for many years so it's easy to forget how distressing the initial news can be.

Good luck and let us know how it works out.

Sorry you are going thru all this, do you have any changes with your skin? Dryness, rashes? I was wondering if maybe it could be celiac's? It runs in my Dad's family....my son got Crohn's!? Good luck to you

mommytocrohn'steen said:

Sorry you are going thru all this, do you have any changes with your skin? Dryness, rashes? I was wondering if maybe it could be celiac's? It runs in my Dad's family....my son got Crohn's!? Good luck to you

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The only skin problems I have are small patches of dry itchy skin on my chest. I've had these for several years and they are worse in the winter, better in the summer.

I suppose it could be celiac's - just as likely as anything else since I don't know what is going on. I have to wait and see what the tests say but it's hard for me since I am not a patient person.

One other thing I forgot to mention before is that these bouts of colitis symptoms may be related to my menstrual cycle. Two of them began on day 4-5 of my cycle and one on day 9. I don't know if this is coincidence or not. Since I don't know what is relevant I am (over?) analyzing everything.

If it is Crohn's, and I'm not saying it is necessarily, all sorts of weird symptoms could crop up. Since it is believed to be autoimmune, you can experience skin problems, eye problems, allergies, etc. Also, many women complain that they experience symptoms more severely around their menstrual cycle. Something about the fluctuating hormones... I know before I was diagnosed, I was adamant my problem was gyno-related. I thought I just needed a different form of birth control.

I also didn't experience any weight loss, but I was anemic, without knowing it.

Also, the reason why low fiber is better for you when your symptoms are active is because if you think about the fact that fiber isn't really completely digested and then you have either inflammation or ulcers going on inside. All that extra bulky stuff is scraping along your insides that are already really sensitive.

Once the disease is in remission, many people find they can tolerate more fibrous foods than when they are actively flaring. But, it is a common misconception of people to think that people with intestinal problems just need more fiber.

The low fiber thing makes more sense now. Thanks.

I would not be surprised if I was anemic too. I have a history of my iron levels being low. My last blood work done in March shows my RBC, hemoglobin, and hematocrit to be barely within the normal range. My white blood cell count was high and some of my liver tests were high.

Tell your GI everything and ask a lot of questions when you go. My GI is great...he will spend as much time as you need with you. I know not all of them are like that though. I would log what you eat and try to figure out if you ate the same thing around the times that you are having an episode. Many people have trigger foods that send them over the edge with no notice.

The weird thing about fiber is that my GI actually says I need to make sure I eat enough fiber...now that I am not flaring. He said it will keep things moving through there quicker which is better. Of course when I was flaring I pretty much stuck to a liquid diet as everything I ate felt like shards of glass.

Another tip...if you feel like the dr. is not helping you or you don't agree with the diagnosis...see someone else! Crohn's is very hard to diagnose sometimes because it can be quite different in people. My symptoms were: extreme pain in lower right region, feeling of nausea after eating, throwing up after eating more than a bird's serving of food, tiredness, weightloss, diarrhea. They saw inflammation on a CT scan and sent me for a colonoscopy. The colonoscopy showed Crohn's in the large intestine. They don't know what causes it, and though foods may trigger it, it is not caused by food. When not flaring I can eat most anything...though excess of some foods still give me pain.

Sorry for such a long response, hope this helps a bit.

Do you know what your sed rate was?

Welcome. I am sorry that you are having such frequent symptoms. I have UC and have blood and mucous when I have a flare. I have found (for me) that eliminating all dairy and eating only soft, cooked veggies and rice are about all I can tolerate when I am bleeding. Since you have been on so many antibiotics, you might want to consider a probiotic to rebalance your system. If I take antibiotics, I almost always start to flare, unless I am taking extra probiotics. Antibiotics kill germs, but they also wipe out your good bacteria.

Hello Bookworm and welcome to the forums!
I'm pleased you have joined us here...
There is a lot of information and even more support!

Healing Hugs~Nancy

Thanks for making me feel welcome and for all the good information. The appointment with the GI doctor can’t come soon enough. The probiotics are a good idea, need to get some this weekend.

mommytocrohn'steen said:

Do you know what your sed rate was?

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I don’t see sed rate on my report for the labs. I had to look up what that test is and is saw it is an indicator of inflammation. Hopefully the GI doctor will order that test along with any others that can give me more information.

Last night I was so tired after work I had to cancel my evening plans and go to bed. I slept from 5-7, got up and had some soup, then went back to bed until 5:45 this morning. I still feel like I need a nap.

update

I had my consult with the GI doc today. She scheduled me for a colonoscopy on May 12th. I'm glad I only have to wait 3 weeks for that and I'll get it done before we leave on our trip.

The doctor didn't seem to think I have IBD because I don't have D or abdominal pain in between these three episodes of bloody D. She focused a lot on the fact that I had a positive C. diff test when this all started last May. She said it is possible to get recurring C. diff. For now the plan is they will see what the colonoscopy shows and if I have another episode of D she wants me to call right away so I can submit samples for more testing that was not done on previous samples.