Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group hitting bottom

I'm sorry I feel like I've been coming on here to complain a lot lately, but I feel like I'm getting pretty close to hitting the bottom. Yesterday I had a colonoscopy and edg because of my stomach issues. I didn't get to talk to the doctor but the nurse gave me the initial findings which showed hiatal hernia, esophageal inflammation, and internal hemorrhoids. I have to wait for biopsies to get back but I just feel like I'm not going to get answers. All day after the procedure I just wanted to cry, and its been like that on and off. I'm just sad, and not just sad but angry. I feel like I'm pretty close to blowing up on my husband because I'm just so angry. He's basically stopped doing anything to help around the house, I feel terrible all the time and I feel like a slave as well. I really don't want to go back on antidepressants because it's not going to help the real problem. I just want to feel better, I'm sick of feeling terrible. My joints have been a nightmare since I stopped Celebrex (my new insurance won't pay fir it)and Flexiril. I've lost a lot of the range of motion in my neck and shoulders, but the last time I saw my rhuemy she was like "I think we're on the best treatment path so I think we should stay the course" but I think I want to try some different meds or something. I just don't know I am exhausted and just very sad and angry.

Iam sorry for your suffering,
it's good to communicate your complaints,
I had a colon test also, hernia, gastritis, pre cancerous polyps removed.
had alot of problems swallowing, very painful, and scary. They wound up stretching my throat. I fasted for 3 days, after I started eating again it was some serious gut pain. The frozen shoulder was just starting to set in also.
I was a real mess when I joined this family, eventually most of that passed, but not without alot of counsel from this forum.
Now days I mostly just have back pain at night, two or three hours and I have to get up. It gives me the opportunity to check here, and maybe offer some help. Be patient, things will change.

Sorry you are have such a rough time. I hate insurance companies they have to much control over our medical treatment.

I also have AS and asthma, it's a killer combination.

Don't stop Celebrex if it helps you.

Hello, SeritaV:

Many of us have been where You are right now, and know too well Your frustrations.

The good thing about hitting bottom is that there is only one direction of travel after that. We (and too many others) can always tell ourselves "things could be worse," but we must deal with the realities as we face them right now in the real world.

I don't understand how it is that some insurance would not cover Celebrex, but maybe they accidentally know something we don't? This drug (as most drugs) does not actually "treat" the cause of illness directly, only allows some relief and should never be used long-term.

Turn Your anger into positive actions that will get Yourself on the right track, physically and mentally.

You have a very short period of time to regain Your ROM--perhaps up to a couple of years--so it is key to eliminate AS from Your life immediately. The something else to try is the most important lifestyle change: Diet. Please visit the NSD and Diet Forum to see if this is the right thing for You at this time. It would be very bad to just continue treating symptoms while the permanent skeletal damage continues apace!

HEALTH (every good thing will follow),
John

Hi Seritav!

I'm so sorry you're struggling. I'm not diagnosed but what ever I've had this last year has been crippling and my husband and I have had a rough time. He's not really taken it seriously till recently but similarly stopped doing anything in the house to help and gets very frustrated. Then he gets snippy, I get upset/ mad and we explode

What I have found useful is this website (I'm in the uk) as its prescribed to people who are struggling with mh etc - it's CBT. I'm on a waiting list for CBT here though it's going to take ages so I've been referring to this. Think I'll be great by the time my turn comes! It has a section on pain management BUT the sections on assertiveness, anger, anxiety etc are actually more useful imo as I have this innate sense that exercise and pacing and stretching will help me, it's just really hard with a 2 year old and extreme fatigue plus the pain. (Which is why I'm suspecting AS) The pain management section is more about if the pain is not relieved from exercise.
http://www.moodjuice.scot.nhs.uk


It's not totally the answer but helps a little. I've just come of sertraline as the gp and I suspected my issues were due to that plus how it affects thyroxine (I'm hypothyroid) but there doesn't seem to be much change so I'm awaiting a rheumatologist. Sertraline was lovely on the mind and sleep but lists a lot of muscle side effects, hence why my gp thought this. But, don't see taking antidepressants as a bad thing; I'd happily stay on sertraline as it made me think so well! A brain booster - I'm sure my iq went up!

I noticed you are in special ed and paint? (meant to reply the other day and had to search for your post again) I teach children with Autism and did Fine Art at uni Im not able to work at the moment however

Thank you for all the replies. I was in a very dark place last week and I think some of it was due to the drugs they gave me for the colonoscopy. I could be wrong but I noticed I felt a little better two days after, like less heavy mentally(if that makes sense). I am still extremely frustrated and feeling pretty poor, my knees have been up to their shenanigans again. I also have been painting more too, trying to get back into it. I love it so much and just need to set more time aside for me.

I have been doing stretches my PT had given me and some my rhuemy wanted me to do because of a curve I have at the base of my neck. I do them not every day, but regularly unless I feel really terrible. I was in PT for awhile but I was told to stop by my drs because of my asthma. I got really physically sick and went into a flare after about 5 weeks of consistent PT.

I've been hesitant to go into one of those diets. No offense to anyone but I've heard a lot of faux science working in sped. about diets that cure anything from autism to ADD. Also, honestly due to my gastro issues I really don't want to commit to any diet change until I get some results. I feel so frustrated waiting, I thought crohn's was out of the question since the nurse didn't say anything about that after, but when I saw my regular Dr today for the asthma she said that they have to wait for the biopsies (which was a downer).

I was on Zoloft after my daughter was born for PPD, which was a life saver but I went off after awhile because of side effects, so I'm pretty reticent to go back on, but I might consider it.
I know I've probably said this a million times but I just want to feel better. This community is really helping though. Thanks for your support.

Serita, check with your pharmacy about your Celebrex--when I picked mine up two weeks ago, I had a pleasant discovery when i learned the drug was now available as a generic. This was a huge savings for me, as my copay dropped from around $100 to $4. Hopefully you will be able to get this too and be able to afford it. Good luck with this and all the problems you're having.

Brad

I think you're right to wait till results before making changes to diet. I'm glad you're feeling a bit brighter. Don't undersetate the impact that physical things have on our mental health. It's really tough.

I understand about the diet thing - I saw a chiro for the first time ever a few months ago. She told me most of my issues were "chemical" (which I agree as I believe iron, thyroxine, b12 and possibly the Zoloft / sertraline have been the biggest issue) however then told me to go completely grain free (which instantly alienated me) and then tried to engage me in a conversation about gluten causing autism. o_O

The only thing I have potentially changed my view of it is what I've read about the professor from kings college London's research about the role of klebsella (sp) bacteria in AS linked to the auto immune aspect of AS. The diet simply appears to reduce the amount of bacteria and therefore the level of autoimmune response. From what I can tell he's been a well respected researcher in the field and in the uk (and we don't suffer fools gladly!)

However, with this in mind I also wonder about the impact of live bacteria through live yoghurt and probiotics helping to redress the balance?
I did find about ten years ago that I simply had to eat live yoghurt each day with my porridge to help my digestive system. It would often be painful if I didn't keep it up. This is just me though and could be due to any number of reasons.

The gastro called me to say that the biopsies didn't show anything and i asked her about the inflammation in the esophagus and she gave me some bs about it being caused by vomiting except the fact is I haven't vomited in months. I also asked her about the abdominal pain and she said the next thing they'd check is the small bowel, which I don't know why you wouldn't have checked that to begin with. I know I should be happy they say it's not crohn's but as I told my husband it doesn't make the symptoms go away.

My chest is constantly burning and I'm still getting lower abdominal pain. Now I'm not supposed to see her until February 16 I think. I want to call back and ask for a sooner appointment or something. I don't know what to do. It doesn't seem to really be effected by what I eat since sometimes have intense burning before I even eat anything in the morning and even into the afternoon.

And i cannot do the bland diet anymore. If I even look at broth I gag. I'm just kind of mad she didn't even offer me anything to help. Advice or meds. I just don't known what to do. I have some people (my mom) who's just like "well may be its just how it's going to be," and it just makes me want to cry. Granted she's jaded because she has a lot of health problems, but it's frustrating. I think she forgets I'm only 26! I don't want feel like this for another 60-70 years til I croak. I feel like I'm old already. I see other people my age and it just makes me depressed. I'm just at a loss about what to do next. Maybe I should get another opinion? It's just very hard to get gastros and rhuemies are difficult to get into in this area. Worse, I am limited to a select amount of doctors because I am technically on Medicaid.

One thing I'd kill for: ENERGY! I am dying. I feel terrible because my daughter wants me to play but I need to take breaks. I HATE IT!