New here

[desr]

I am new here, but don't suffer from Crohns. My problem for 30 years has been debilitating adhesions from??? some sort of initial bowel inflammation early 20's, yes you have Crohns, no you don't, yes you do, no you don't etc etc. This went on for about 10 years with Drs disagreeing. Whatever, it remains a puzzle but I am told I have adhesions like a Crohns patient. One Dr told me I most likely had it at first and it went away, evidently in rare cases, but have not found anybody else prepared to say this. Needless to say my problems are very extensive, very problematic. Any further surgery for me now is dangerous, I may die or have a protracted recovery, so I am trying to avoid this any way I can.

So I am here to find out how other's cope. I do my best, and some days are better than others. I try to put my pain into a little pocket and get on with things, but sometimes it is just too overbearing and I end up in hospital. Pain killers might help the pain but give me other troubles like making the problem worse by not being able to pass anything, then the cycle gets worse and I need a colonoscopy prep to relieve myself. Recently it has been suggested I might need to do this weekly, even when I don't take the pain medication I still end up in trouble, it just makes it worse. Nutrition is becoming a problem as my diet is very limited, or fluid.

I suffer from intermittent partial bowel obstructions frequently, but I self manage if I can bear it. I also suffer from complete obstruction from time to time, and also pulling pain that can really set in and last for days at a high level.

So, my question, what do others do to cope and get through their days. I would rather the conservative approach to my treatment. Also, is there any news on the horizon to fix this problem?? (I know that's a long shot).
I am in Australia and there does not seem to be a support group here, and many others I have found on the web go off track a bit.

 

[Gianni]

Hi Desr,

First off welcome to the community.

Darn it seems like you have gone through a pretty tough time I hope that turns around for you soon.

What medications have you previously taken? Are you currently on any medication?

Have you had your Vitamin levels tested?

What is currently the extent of your diet? (try to be specific).

What surgeries have you had?

Have the doctors thrown around another diagnosis besides Crohn's?

There are many members on this forum who are from Australia and I am sure they will chime in soon and help you possibly find a support group in your area.

You can visit the forum's Undiagnosed club(click that) for support from people going through similar situations.

This forum is filled with some great people so I am sure you will get some answers and peace of mind soon enough.

Hang in there

Gianni

 

[David]

Hi desr and welcome

Wow, I'm so sorry you're having such a rough time and the lack of answers from the doctors must be really tough

Are your adhesions throughout your abdominal cavity or more in the upper right area?

I suggest you give this a read.

All my best to you.

 

[desr]

Hello Gianni & David,

Thank you for your replies and concerns. I will try to answer as succinct as I can as it has entailed 30 years of problems from when it all started, at age 22.
I will do in dot point, that may be easier.

* Age 10, appendix removal. Years following lots of abdo pain but no answers, (probably adhesions I think now looking back)
* Age 22, lower R abdo pain. Drs thought maybe ovarian, but exploratory revealed an inflamed ileum. Off to the general surgeon and gastro.
* Announced I had Crohns. Started on Prednisone and Salyzopyrine (sorry cannot remember spelling)
* After a few months, obstruction. Found surgical starch from previous surgery all over my pelvic and abdominal organs, massive adhesions, peritonitis, granulomata growing all over my bowel, twisted bowel. I was in a bad way. No Crohns found.
* Following that, problems continued. More pain, another obstruction, cannot eat, losing weight. You might have Crohns back, cannot rule it out because initially had an inflamed ileum which is Crohns. ?????
* More surgery for obstruction, not Crohns. Later on, same again and again. Still may be Crohns, no it's not, it's just adhesions.

* mid 20's infertility, ovarian cysts developing both ovaries. More obstructions, more surgery for this and also gynae surgery.
* Early 30's complete hysterectomy as was such a mess, and one remaining ovary enlarged due to cysts which evidently developed because of everything stuck together.
* years following so much trouble with obstructions, 1 laparoscopy that resulted in some internal bleeding and failed.
* 1 colonoscopy that failed as could not pass scope beyond sigmoid colon so more surgery.
* 2 large open surgeries that resulted in TPN feeding with central line because my bowel decided not to work for over a month or so. I am in my 40's here.
* Early 50's. Last laparoscope was possible with improved techniques but adhesions very dense. Took a lot to recover from and had difficulty eating for the next couple of weeks, then another obstruction but it cleared. Took months to recover from to a point.

* Adhesions are throughout my pelvis and abdomen. There is evidently a carpet of them across my abdominal wall from one side to the other. Bowel all stuck together, and on the R side there is a dense bunch of them R to my navel that could not touch as too dense and matted, being too risky.
* Because of all the scar tissue my bowel motility is very restricted so I have to take laxatives all the time. Even then have trouble. I sometimes resort to a colonoscopy prep fluid to drink to melt it all down and empty. I've been told this may have to become a weekly thing.
* I have pulling pain on the R side where it is all very dense. Even my clothes like underwear and jeans make this uncomfortable. I feel as if it is really tight causing an increase in pain, but I have no recognition of this feeling on the left side, completely feels normal there. I eat very little and it has to be low or no fibre, drink fluids and soups, supplement with Sustagen. Even this causes excessive bloating and hence pulls on my R side pain, and can be very uncomfortable and painful.
* I also experience L sided obstruction pain. I can pinpoint where it happens because I get loud gurgling like down a straw in conjunction with cramps that double me over, cause me to vomit, sweat and nearly pass out (did once). This happens perhaps too frequently. At least once a month, sometimes it has happened twice a week of late. It gets so forceful that eventually I have something my surgeon calls "the dam busters" as it all just comes away like that and it means it's passed. But I am left totally exhausted and dull pain afterwards that just leaves me depleted for another day.

* We are of course very reluctant to operate any more, and I can understand that. Only in an emergency situation where we have no choice, otherwise I am treated conservatively. My surgeon said if he has to operate again he would take my colon out at same time.
* He says surgery is very risky in my case, because of complications could be the end of me.
* So I exist on managing what goes in and what comes out, and pain killers, but anything worth getting rid of the pain when I need it, is a catch 22 situation because of the constipation caused by the opiates.
* As a result, I put up with a lot of the pain for this reason, and I don't want to become a zombie. I take something most evenings (mostly Digesic but Endone if not settling) when in bed as I don't have the distractions to take the pain away from me and I find it hard to settle because of the pain. Some days I just give in and take something through the day, but I hate feeling like I am not living in this world.
* Sometimes I just end up in hospital for pain relief and bowel rest as I feel sometimes I just cannot cope at home like this anymore.
* My surgeon though is very sympathetic, holds my hand and tells me he feels so sorry for me, and I genuinely feel his concern. I am a tough case.
* I wish for some sort of pain relief that does not leave me feeling like a zombie and be able to enjoy food more, but I know that is not going to happen.

I hope this was not too complicated to comprehend. Any helpful information is greatly appreciated. I just want to be able to cope better.

 

[David]

I have no advice on the adhesions, just sympathy

However, regarding the pain relief that lets you enjoy food more, you may want to look into medical marijuana. I don't know what the laws are there for it, but those that can get it here report fantastic results.

 

[desr]

Hi David,

Thank you for that information which I will definitely read and absorb. It is not legal here but only just recently there was a discussion on a Current Affairs program about the possibility of it being used or made legal for medical purposes in the future. So it will be very interesting.

Kind regards
Desley