Adhesions questions

Hi ladies. I know that alot of you on this road have adhesions and the answers to my questions. That's why I'm posting here.

Has anyone had instestinal blockage or kinking due to adhesions? What would that feel like? My pain has returned from my adhesiolysis four weeks ago, and is much worse and persistant. Along with the familair right-sided pain, it is also on the left side, making me feel like now my left ovary is involved when I thought it was clean and clear.

I went back to my GYN doctor last week, told him how I am still having a lot of pain. He was at a loss and sent me packing: referrals to 2 gastroenterologists, 2 pain management docs and scripts for more pain meds. My husband agrees that it is time to move on. I went to my GP, hoping for some answers, but got only a referral to GE. My GP, however, said that it is possible for adhesions to return so quickly and that they can cause kinking in the intestines that are painful, but not blocked. I have no outward symptoms of intestinal blockage: nausea, vomiting, fever, etc. But the pain is very real.

Made appointments with two different GE, but neither was available until the middle/late June! I told the one receptionist that I'd be dead by then by overdose of pain meds. Didn't take me seriously. I have to return to work on Monday.

At what point should I show up in the ER so I can see SOMEONE who can give me answers (and relief)?

I am sorry that your gyn "sent you packing". So does the gyn not want to be involved in fixing this (at least on an FYI basis)? I'd think if nothing else it would be valuable information to track your care so that he/she could better evaluate the next patient that presents with similar issues.

Anyway, to answer your questions ......My MIL had radiation treatment for cervical cancer which caused major scarring of her intestines (adhesions and her intestines are the consistency of rubber tires). She routinely has kinks (never a full blockage that required removal of part of her intestine). She has incredible pain and nausea when she kinks.

My grandma has damaged her intestines thru overuse of laxatives. When she gets a kink she also has incredible pain and nausea.

I've had adhesions and find that just before a BM as things are passing by a particular area, that I would have incredible, but short lived pain (until I had the BM or relieved the gas).

So, how long is the pain lasting? Is it cyclical? Is it related to a BM in any way? Are you keeping a diary or journal of your symptoms? It really is very helpful in establishing patterns over time.

I am so sorry you are having pain again...as you can see in my sig line, it has happened that quickly to me twice...once in 3 weeks and the last time in 4 weeks and then one time it took 6 months. I had a colonoscopy before this last surgery to make sure it wasn't anything GI related...this 15 min procedure took them over 3 hours with me and I ended up having general anesthesia because of the pain it caused. They even used a pediatric scope and could never get all the way through. My colon was twisted or what they call "torsion of the colon" causing a narrowing of the passageway which eventually can cause an obstruction by closing completely off...I have it again I am sure of it...when I eat fiber rich foods, the pain is unbearable even with all the drugs I am on cause I can feel it try to pass through these narrowed areas...a way to look at what I mean by twisted---think of a slinky , how it twists---or when you wring out a washcloth you twist it---that is what happens to my colon with adhesions. You will probably end up getting a scope....and they really need to do that to make sure it isn't anything wrong going on inside. I am currently in pain management for my pain and appealing my disability claim, that is how bad my pain is....but (((michelle35))) had a great point----keep a diary of your pain, what it feels like, how long does it last, how long since your previous meal, etc...this will help the docs decide on appropriate treatment and causes.

Unfortunately the answers aren't always fast in coming, nor are there always easy, clearcut answers. I will be six years post op on Friday and I'm still searching for some long lasting relief and solutions to my problems.

I think a referral to a gastro doc is a good idea. It may be something intestinal going on. You don't know, unless you have the doc check it out. It's unfortunate that we have to wait for these appts when we need help NOW!

I have lots of intestinal problems and for me, adhesions were ruled out 3 years ago, so not all our problems are necessarily from adhesions. I do hope that yours have not come back.

I hear you on the ER. I've been dealing with this stuff for so long that I am never sure when it is time for me to head to the ER. I just hope that my body and mind will let me know when it's time. I know that's not much help to you, but hopefully you will know when it is time.

Thanks, ladies. I called another Gastro doct yesterday that I was referred to by my gyne. They started scheduling me for a colonoscopy next week, and I said "doesn't the doctor even want to examine me and talk about my history first?" The nurse said that I have already been examined by the other two doctors and since I had the referral, they must've agreed that a colonoscopy would be diagnositic. The Gastro doc primarily does colonoscopies, but doesn't necessarily treat. Does that sound right?

I told the nurse that I had to talk to my husband first before I would commit. Afterall, he would have to take off a day of work and drive me. Also, I will be losing a day of pay for the procedure (I am out of sick time).

Marian: My work told me that I will no longer have any sick time benefits, and that I had to return to work on May 9, or go on unpaid medical disability leave. YOu said that you are filing disability claims. Any words of advice?

I really don't have any advice on the disability claims yet....but I have been where you are now and I finally realized that my health was more important so I have been out of work since my last surgery in Sept 04....it has been tough, we had to file bankruptcy, but we were able to keep my SUV and the house and everything in it. I am not saying that this is something you should do, but in my case my pain is debilitating, I can't do much of anything and come home in tears from the grocery store, I can't sit up for longer than 1 hour or stand for one hour before the pain gets worse...any activity increases my pain. If you can manage to work, that is great...if I were in your shoes and could handle work, I would work.
I dont' like the idea of that doc not seeing you before the scope...that is not cool in my book...but I am sure no matter who sees you, you will be having a scope.

McDermottat:

I'm so sorry you're having this trouble. What a bummer! Like Marian, my adhesion pain returned soon after my adhesiolysis - - probably about 4 weeks later. Doctors who tell you that adhesions can't return that soon don't understand anything about adhesions - seriously. As Michelle indicated, though, a pain journal would go a long way in helping you figure out your pain as far as when it hurts, what makes it hurt more, whether it hurts more when you have a bowel movement, etc. Also, as Marian mentioned, a colonoscopy might be in order. I had one of those about eight months or so after my adhesiolysis. The results were fine in that I didn't have the issues she had. The doctor was able to get through fine and there didn't appear to be any constriction of the colon. BUT, that doesn't mean that the adhesions aren't connected to my intestines. I know from the operative report from my adhesiolysis that there were "massive, dense adhesions" my bowels and some on my colon. I don't have nausea or cramping pain but I do have burning, aching pain. And, I can feel knots underneath my incision and in various other locations all over my abdomen. FINALLY, am I mis-reading or did you not just have your hysterectomy in February? If that is indeed the case, you're still experiencing healing pain, girl! To top it off, now you've had another surgery less than three months later. Time is going to be about the only thing that separates healing pain from adhesion pain for you. Just be sure and not ignore any acute pain that doesn't subside over time. Hope this helps a little - - even with those of us on this road together, we can all vouch that it can still be lonely because each of us has our individual situations to deal with. Hugs!!