Sylvia, thank you for reaching out, I’m sorry to hear you are having similar problems! Your pain sounds awful and I’m so sorry to hear you are going through that! It’s been almost a year a half since I first started having pain that comes and goes on my lower right side. I’ve seen several different doctors and my latest one thinks there could be a narrow spot in my small intestine where my stoma used to be so next month he is going to do a pouchoscopy with a smaller pediatric scope so that he can go further up and look at that spot and dilate it if necessary. I had a loop ileostomy while I was waiting for my j-pouch to heal and he said when it’s stitched up and put back in then that part of the small intestine can be a little kinked and not perfectly smooth like it used to be so it can create a narrow spot that food can get temporarily stuck in causing partial obstructions that resolve on their own when the food finds it’s way through. This would cause pain but wouldn’t necessarily show anything on tests. If this is what he finds and he’s able to fix it that would be great! If he takes a look & finds nothing unusual then we’re back to the idea that I’m having partial obstructions because of some sort of adhesion interference. Initially when this started happening the pain was unbearable! It’s still happening every 1-2 months but now the pain reaches about 7/10 instead of like 12/10 and only lasts an hour or two instead of lasting 5-8 hours. I think the reason for the improvement is related to changes I’ve made such as eating smaller meals, eating less bread, rice, pasta and other things that cause thicker stool and taking Miralax every day (these were all recommendations from my doctor). I tried physical therapy once but the therapist didn’t seem to be very knowledgeable about my issues even though I was told she could help me when I scheduled the appointment. I was feeling overwhelmed by the number of different kinds of appointments I was going to so I haven’t been back. I have been seeing a massage therapist that has been doing abdominal massage and that has been interesting because she has been able to pinpoint the area of the pain and replicate the pain by pushing on certain spots. I’ve only done this a couple times so I’m not sure if it is helping yet but it doesn’t seem to be hurting anything so I’ll try to keep up with it and see what happens. So, that’s where I’m at. Most of the time I feel okay but when I end up in pain and don’t know why it is really stressful and frustrating. I will keep searching for answers! I hope that you feel better soon and I hope that you find the help you need too!
Jackie, I did see a physical therapist once but haven’t been back. I found the one I went to by seeing which ones were covered by my insurance and calling around explaining my situation & asking if they could help me. The one I saw was nice but didn’t seem to know a lot about what I’m dealing with. Maybe she could have helped me if I stuck with it but I needed a break from having my life revolve around appointments. I did the same thing with massage therapists and I’m liking that better than the physical therapy for now. I wish there were more therapists that worked specifically on these issues but they seem to be pretty hard to find so I just looked for someone who knew a lot about the body and how everything is connected and who felt comfortable working with me on that area. I hope you find someone who can help you!
Marj, I tried to find help for the pain itself since no one has been able to fix whatever is causing the pain and I just seemed to run into a lot of dead ends. After pushing a lot I was given a low dose of oxycodone but my doctor was super reluctant to give it to me and said he wouldn’t give me any more and recommended not taking it. I tried it a couple of times when I was in pain and it didn’t help very much. I was also told by other doctors not to take opioids because they cause constipation and will make it take longer for the obstruction to work itself out so even if I could get something that would help with the pain I’m scared it would make things worse. I was finally sent to a pain specialist who said he didn’t know what to do with me because he’s used to treating people with chronic back pain and things like that. He prescribed me methocarbomol, a muscle relaxer and when I asked how that would help me he said something about how there could be a placebo effect from taking it and that might help me. That was really frustrating! I never took it because I didn’t see the point. He also offered to prescribe medications such as antidepressants that can help with nerve pain even though he couldn’t tell me how that would help this situation. I’ve reached a point where I don’t think I’m going to get any help with the pain and I just have to find a way to get through it mentally when it happens, which really sucks!! I don’t know what else to do though. All the doctors I’ve seen seem to be so freaked out by the opioid crisis that they won’t even acknowledge or discuss the pain itself.
CALIFORNICATION, wow! I’m so sorry to hear you are going through this but also really happy that you were able to find out what was wrong! I’ve never heard of this so it is a really interesting to hear about a new theory of what might be causing this. I do get bloated a lot. I’ve figured it’s just because there’s not as much space for anything to go since my large intestine is gone but I’ve also wondered if food and liquid builds up sometimes and then causes obstructions and/or puts pressure on certain things which would cause pain. I have had a lot of scans, CTs, ultrasounds, an MRI, etc, so I’m wondering if it would it have shown up already if I had this, but maybe not. I’ll have to ask my doctor about this. Thank you for sharing what you’ve been through, I hope you feel better and have a great year in 2020!
Thank you everyone for your input & responses. I am really grateful to have this community to talk to.