kimberlymarie,
I have bad anxiety too and am more OCD than most people. My hands constantly look shriveled up because I wash them so many times a day. I go up to 15 times a day and then I have to wash them after I pet my cat, before I make anything to eat in the kitchen, you get the idea. I'm constantly putting on lotion.
I understand your apprehension about using the suppositories. It sounds like you have cuffitis in your rectal cuff. That's the area at the bottom of your pouch that is attached to 1-2 cm of your rectum they left in when they did your surgery. This was done to keep you from being incontinent. So they removed 5 feet of intestines/rectum/appendix and all but left in the 1-2 cm to attach the j-pouch too. Cuffitis IS ulcerative colitis, they call it cuffitis or inflammation at the bottom of the pouch but it's the UC we thought we were to be cured from and it upsets me to no end.
It's the same disease we could not get into remission and the reason why our colons were removed! In order to get it to clear up or go into remission you are going to have to use suppositories as they deliver the medication directly where it needs to be. I know this is gross but I have a few suggestions.... Get some laytex or whatever gloves the medical professionals wear and use a clean one each night to insert the suppository. You only need to push it up between 1-2 inches, if that at all. You can also put some lubricating jelly on the tip of the suppository so it won't hurt much going in. If you have pain medication, take it at least 30 minutes before inserting the suppository. It might not hurt to have your anxiety medication too, until you get use to doing it. Another idea is to use a tampon like thing to place the suppository on so hopefully you won't need the glove but you can wear a glove. You can get little inserting tubes if you get a yeast OTC medication where there are 7 applicators to use one for each day. I have not tried this one but I was going to if I had a problem with the gloved/KY lubricant way. I tried vasoline first but found out that was wrong as I was coating the area with vasoline that I was trying to medicate.
You should call your GI or her nurse to find out what the results of they biopsies were, just to make sure you do have cuffitis/inflammation. If you don't then no suppository problem. I'm thinking since you didn't hear that you do and she is assuming you are using the medication.
As far as the stool sample maybe she took a sample during you scope like my GI did and therefore I didn't have to gather it. I recently had to be retested and they gave me a plastic container, almost like a cool whip container, and it hooked into a gizmo which made it a hat. Then afterwards I had to take the container off - real easy - and put the lid on which was really easy. If you do a test this way you don't have to put the poo in those little bottles with chemicals in it. I gagged doing that years ago when I had UC, So if you need to do that test see if they can have you do it at the hospital lab like I did.
I have been using suppositories since January and it does get easier the more experience I have.
My GI referred me to the Mayo Clinic as he did not know what else to do and told my husband and me so. I went back to see a doctor he referred me to in 1998 and they redid the tests. That's where I got to do the hat like poo test. He also found out my thyroid medication is all messed up too. I'm assuming they are testing your thyroid. My internist has been decreasing my dose the last 17 months and I've gone from 175 to 112 in dosage and will probably go lower. That messes a lot of things up too and he said can make me have more BM's.
My Internist does take care of all of my meds except the GI specific ones and she understands the pain I'm in plus I found out at Mayo that I have IPS, the same thing as IBS except I have irritable pouch syndrome. I had IBS and IBD before the surgeries so that explains part of my other pain. I'm telling you this as you might want to tell your mother that it's possible you have IPS and she should be able to relate - hopefully better. You might want to google it and see if the description sounds like part of what you are dealing with.
I also hope that you are seeing a therapist. It is hard for me to just get to see mine as I don't want to leave the house or drive a car unless my husband takes me. I was not like this before the surgeries and complications all mixed with my prior stressful and trauma's and boom I've been diagnosed with PTSD.
When I use fiber I take the caplets that are like clear pills filled with psylum as I can't stand the texture of mixing it with water or juice.
As far as eating I eat very little during the day but make myself have something with my VSL#3DS probiotics such as a protein smoothie or yogurt. Sometimes applesauce. The protein smoothie provides 42% of the daily required protein and is hypoallergenic. No gluten, lactose, nuts soy or any foods that cause allergies plus it is all plant based. I don't think I have food allergies but this is healthy and it's liquid like so it keeps my pain from starting in the morning. We need protein to build up our cells. I eat protein, the size of a deck of cards, at least, each night and pasta, rice or potatoes. I try to drink V-8 juice as can only tolerate a few different kinds of vegetables. I also eat a half to a whole banana a day. I eat crackers before taking medications.
I'm trying to help you see that this is doable and you are not alone.
I know I've rambled on and on but I can relate to your fears and anxiety. Mine aren't as bad as yours as I'm old enough to be your mother and have raised 2 children. You get use to a lot of gross things when raising a family.
We are all concerned about you and especially since you are so young. This is the worst thing that has ever happened to most of us and you are so young to have to deal with it.
Using a suppository is so much easier than taking care of an ileostomy and I never want to go through that again!
