Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How to cope?

Hi Christina...
Just wanted to send some good wishes and hope you get back to feeling better real soon.

Forgot to mention....there are two types of prep. I had to take that chalky nightmare stuff the first time. This time I get to take the Viscol tablets. THANK GOD!! YOu might ask your doc about that. You take them every 15 minutes with water. I start mine tonight.
I can relate to the stomach problems. Not eating when I flare real bad is something that I have had to struggle with since late December. Have they done any other blood tests to check for infections or bacteria in the tummy? I had the H.Pylori bacteria while I was preggers FOUR years ago and could not be treated with the triple antibiotic treatment b/c of baby. By the time they did..my gallbladder had to be removed [at 6 mos preggers] and then had colitis, gastritis dx. I had to be retreated this past december. It eased my symptoms for about two months and now I have to go tomorrow morning for an endescopy and colonscypy. Not something I look forward to but my GI doc is concerned and she has always been fearful of UC and Chron's. My grandpa has had many GI problems and it looks like I inherited some of them.

I can tell you if they put you completely out..the scopes wont be a problem. I almost ran out the first time when the nurses said they would only relax me but I would be awake. Then my Gi came in and said NO...all her patients are put completely out. WHEW!

Perhaps what you are eating isnt doing you any good since you are not feeling better with the little that you are eating. When I am like this...I eat little, but it's something that settles well. You might check out the NSD forum. It has done wonders for my stomach flare ups.

Feel free to pm me anytime...hugs]]


Buggy

Edited by ladybuggie on 03/09/04 11:45 AM (server time).

Ah Christina, I wish there was something I could do for you. All I can think is to give you a great big hug.





Kat

HIi Christina...there is hope ...I been there and done that and things will get better...It's good you have an understanding and caring husband by your side as you go through this...We will pray for you and husband to be stronger and hope the outcome to be a good one....take care


Hope "Learn from yesterday, live for today, hope for tomorrow."
."

It is possible that some of this is stress related. Just before the holidays I cracked a molar and couldn't do anything about it until after the holidays. When I did get it fixed it caused me unimaginable pain. There is also a lot of stress at work as I am the manager of the family business. As the manager I am privvy to how well or unwell the store is doing financially not to mention some of the rotten customers I have had to deal with on a regular basis. Going through the holidays with the flu and working in a UPS store at peak shipping time. Top that off with a mentally ill brother and a nephew who had a skull fracture a short time back and Oh boy! what a few months I have had. I know as a result I have eaten things I shouldn't have. I also tend to take too much upon myself when it comes to my family. I am a worrier. My mother is about to lose her job and for awhile we weren't sure if they were going to offer her a retirement package (thank goodness they are). Jeez! Sounds like a little therapy wouldn't hurt at this point huh?

I appreciate the thought. I am considering that stress is slowly killing me. Problem is now that some of it is peeling away the stomach and gut are still going. If the doc doesn't find anything wrong I am going to try some therapy to help deal with all of my stress. Most days I do okay with it but with my current stomach situation I am having a very hard time. I don't have the energy to cope.

Thank you Holly. I have read through everyone's posts today and they have helped more than any of you will ever know.

Christina

I don't know what you mean about protein stuff from the chemist. As far as the bananas I have eaten them everyday for years with no problems. However I know allergies and sensitivities can develop over time. It seems that no matter what I eat right now it hurts. I did try some dill pickle spears and extra sharp cheddar cheese a little while ago and did okay. My stomach is upset but not too bad. I haven't been taking my pain meds and that seems to help too. I think it has been slowing down my gut and masking some of my symptoms. Maybe that is why it got this bad before I decided to go to the doc.

Protein drinks are hard for me as I am allergic to corn. It seems most protein drinks I have encountered have either corn syrup or maltodextrin (from corn or wheat) so quick anything is out for me. I wish I could drink some 7-up but that is water and corn syrup as primary ingredients. If i drink diet the Nutra sweet just makes me more thirsty.

Thanks for your support David
Christina

Christina,

I feel your pain...literally at times...I too have been to the gastro doc, and I have done all the ultrasounds. Unfortunately, I have to warn you this procedure will be more painful than the original pain, even if you don't have stones. I found out I have a very small one that it inflamed. I have found nexium to help, it's like prilosec. My partner has diverticulitis and it sounds similiar to what you describe. She recently went through those two tests and although the pretreatment is a little hard to swallow it helps to clean you out and make it easier for the doc to look around. Her doc puts her out before the procedure and gives her muffins and juice when she comes out... and I try not to take advantage of the loopy affects of the drugs afterwards...she says yes to everything and feels very happy.

Another thing I find that helps that would also include your husband and help him to feel like he's helping, is to make a calm setting in your bathroom and have him run a nice mildly warm bath. Adding candles and music is optional. But just allowing your body to rest and unwind from the pent up stress of having to go through one more test is the key to this. From there curl into the cuddliest outfit you have and add some warm milk if you can tollerate it. I was very reluctant in the beginning, thinking that it really couldn't help the pain, but letting go and really allowing yourself to relax is worth it's weight in gold. It doesn't always work on the chronic pain we share, but I find it brings the pain meter down a couple notches. And any relief is good relief.

Your in my prayers, Tiffany

Hi John.

I think you may be right about the protein drinks. Usually I can tolerate them okay but now they seem to be causing a lot of gas. I think they are hurting more than helping at this point. I am not really sure what to try to eat but I found a protein mix that has whey and egg protein. I may try that if I can find something to mix it in. Actually I make a mean protein shake. I got my husband through 2 surgeries with them and lots of vitamins and minerals. Funny I can't seem to help myself. I don't know if I have a problem with dairy. I haven't had in the past. It's my understanding that dairy intolerance comes with lots of bloating and diarrhea. I have had no problems in that area when eating or drinking anything dairy.

Just so everyone knows I have tried the NSD. It is how I discovered that I have a problem with wheat and corn. Nothing quite like cutting all of that out of your diet and then cheating and getting sick. I have been convinced that I have irritable bowel syndrome but have not been formally diagnosed. When I cut out wheat and corn my gut pain decreased dramatically. In fact I have not had a major attack in years. That is why this concerns me. This is very different than anything I have had before, both in duration and sheer pain. I have meds for Irritable bowel that have not worked.

As far as the tests, the doc wants to make sure I don't have gallstones by giving me the ultrasound. He says if they find some then that may be it for any invasive testing. He says that where my pain is located and that fact that it hurts after I eat might indicate gallstones. And the look from both ends is to make sure I don't have any ulcers. I have a history of sharp pains in my lower right abdomen that I think has him suspicious of something. Stomach cancer and colon cancer also run in my family, although he says I am very young for anything like that. He is also planning on doing a biopsy to make sure I don't have celiac disease. He said that would be more definitive that the antibody test, which came up negative. If nothing else I will have a baseline for future tests.

I know I need to eat. My energy is so low at times it is hard to stay on my feet. It is only a matter of figuring out what I can eat that won't hurt too much. For now I am going to stay away from as much starch (rice being the only major one) as I can and see if that helps any. I don't know if I have the energy to do the apple diet. I ate an apple today and boy did it hurt. Don't know if those are a good idea for me at the moment.

Thank you for thoughts on my diet.
Christina

I'm not sure I have the energy to complete the apple diet. I tried an apple today before eating anything else and the pain was too much for me. I am going to try one tomorrow since I will be at home and can rest. If that goes well I will consider it. As for altering my diet, I am already LSD. I have found that I can tolerate rice quite well. funny thing about all this stomach pain. I noticed that I have not had any pain in my joints except for the occasional lower back pain. My hips and feet don't hurt at all even though I have not taken my pain meds for 3 days.

Thank you for your thoughts.
Christina

Thank you newfieboy. Wow, if you can go through all that and survive it how can I give up now. I need to know that there will be an end to this. I have only 3 more days of work to get through and then I take a week vacation. The hardest part has been getting through my workday. I talked to my boss today about working half days until this clears up. Right now I am not much use there in the afternoons because I am hurting too much. He said it shouldn't be a problem but I can't do it until after my vacation. All I can say is "we'll see." I might make it I might not.

Christina

Hi Buggy

The doc told me about the 2 kinds of preps. He didn't mention that the liquid was chalky though. Darn him. Maybe I will call him back and see if he can give me a prescription for the pills instead. As for blood tests for bacteria I'm not sure. My regular doc drew a lot of blood from me to test kidneys, liver, anemia so I'm sure they must have done a white cell count to make sure I don't have an infection. The results were sent to the gastro doc and he said all of my tests looked good. My rheumy said the same thing.

I thought of something funny the other day. I have heard of orthopedic doctors on occasion being referred to as orthopods. Do you suppose a gastro doc could be referred to as a gastropod? lol. Gastropods are like slugs, snails etc. There is just something funny in the way that word rolls of the tongue.

Okay so I still have some sense of humor left. Since you have to go in to get your endoscopy tomorrow I thought you could use a good laugh.

I am going to look into the foods in the NSD forum. I really have to find something to eat.

Thanks
Christina