A few weeks ago the kids had Career Day at school. They had to dress up as what they would like to be when they got bigger. Neither of the girls really know what they want to be or have any desire to be anything at this point, so they just picked something that would be easy to dress up for or that they had "tools" for. I don’t have a picture of Marietta, but she didn’t look any different anyways so it doesn’t really matter. She chose to be a hairdresser, so she dressed normal and then had a caddy of all different hairdressing tools. Rebecca decided to be a doctor. We found a extra small nurses outfit at Value Village and I just had to shorten the legs a bit to make it fit. We couldn’t find the surgeon’s hat that James’ got (see here) but we gathered other medical stuff that’s accumulated over the past years and they had a fun day.
We have news about Rebecca’s stomach. This past week we seen GI. We were very thankful to manage to get our June referral changed to January. This was originally Matthew’s appointment slot, but he got bumped up to December when he was diagnosed with Fructose Malabsorption so our very nice GI Doctor agreed to see Rebecca in his time slot (usually you can’t do this because it was only a follow-up time slot and you need a consultation time slot for first appointments).
At first it didn’t seem that much came out of the appointment. The doctor would like to just get to know Rebecca and monitor what’s happening before trying to come to any further ideas on how to help her. She did order a x-ray of her stomach since we have never had one done (we have had an ultrasound, but no x-ray). We did that and then went back to wait for the results but for some reason they were not coming up on the computer in a timely fashion so we went home and they called back the next day.
Rebecca’s x-ray, to put it bluntly, shows that she’s full of poop. Even though our less restrictive diet has put her back on a daily bowel movement schedule she is still backed up and not clearing out her system properly. So we started her on a laxative called Dulcolax. She had to take 5 doses of this and just completed her last dose tonight. This laxative works by stimulating the colon muscles to contract and push it’s contents along. It also helps by accumulating water to soften the stools and allow easier elimination. Let’s just say it works well. The nurse warned that she would probably have more pain while taking it and this was indeed true, but she’s been tough knowing that it’s short term and hopefully is going to help the ongoing pains. She was also a bit nervous about going to church (a bit of an anxiety attach) for fear she would be in too much pain or have to keep going to the bathroom. She stayed home this morning since I was home with Matthew anyways and it’s a good thing she did. By afternoon the worse of the last dose had worn off and she was good to go in again.
Tomorrow she starts on another type of laxative called Polyethylene Glycol 3350. This type of laxative increases the amount of water in the colon, but does not stimulate the muscles like the Dulcolax. At this point they are saying she will probably need to be on this for the next six months or so. She has a follow-up appointment in three months so we’ll see how things are going at that time.
So it’s a bit of a comfort to have found something that seems to explain her increase in pain in the last months. It is also nice to know that it is something that has treatment options. We have no idea how long this has been a problem since we have never done an x-ray before. She did have an ultrasound in July, so I assume if it was an issue then it would have shown up ... but I am not really sure and will have to discuss with the doctores. Based on that our guess is that her very restrictive diet at that time did more damage then good. It is really hard to tell at this point whether we were always dealing with bowel/constipation issues or how Fructose Malabsorption factors into the whole equation. For now we hope that this treatment will ease her pain and allow us to better establish and understand how much Fructose Malabsorption is an issue for her. We will also have to better establish a diet with more fiber ... something rather hard to do when you have FM.
So that is the biggest news on the Rebecca front. We hope that this will bring some relief and maybe also ease some of her anxiety as well. We were thankful to see that the GI doctor did not quickly dismiss her case because of the possibility of emotional/anxiety/depression issues. She felt that there was likely both going on and that we needed to look at both, this was comforting.
On the emotional end of things. Since I last wrote we have gone through two assessment/interview processes in order to get Rebecca into a counseling program. The first assessment determined if they felt help was needed. The second assessment was to better understand which treatment would be best for her . We sat down with two therapist and from there they take it back to the team and decide what program would work best for our family. We were told it would take about six weeks to get into a program, so we are just waiting on that right now. They were encouraging in that they did say that it seemed we were on the right track with how we are treating/helping her.
So all in all, things are looking a bit more positive right now. Not that she is feeling any better at this point, but we have gotten our foot in the door at the needed places to hopefully be able to get her on the mend.
1 comment:
So glad to hear you feel like you are getting somewhere! Such a relief:)
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