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Am I really going to have to go on a long term low residue diet?

SpookySpookyMember
I'm mainly just venting. I've had several partial obstructions in the last year and a half, after having none since having my ileostomy. Other than 1 visit to the ER, I have not required hospitalization for these blockages, and they pass on their own after 12-24 hours. I'm not always fully blocked during these periods as I do pass small amounts of stool and gas, but the cramping is awful. I've had x-rays and an MRI which didn't reveal much, so the likely culprit is adhesions, which we already know I have given the fact that my 2nd surgery was prolonged as my surgeon had to "take down" some adhesions to form my pouch.

I have obviously been more careful about what I eat, but what I HAVE noticed lately is that some food might not show back up again for 2-3 days - although I am still continuing to pass stool in between. So I'm thinking that these partial obstructions, when they do occur, are actually a cumulation of things eaten over a few days (like a bottleneck scenario), rather than one or two main "problem foods" that may be contributing. My stool can also be quite thick at times (though this isn't really a new problem) and I'm sure that's not helping. My frequency hasn't slowed or changed otherwise, so I don't think this is a motility issue. Rather I think the larger particles are getting temporarily hung up along the way, and after a certain point it becomes difficult for stool to pass around, hence the partial obstruction. But in between the obstructions I feel great and things are otherwise status quo.

I am seeing my surgeon for my 6 month follow up on Thursday. I will certainly discuss these issues with him again, but apart from regular exercise (which I do anyway), and from switching to a long term low residue diet and keeping prune juice handy (both of which I cringe at - reminds me of my horror story early ostomy days), I'm not sure what else can be done, since I know I pretty much have to live with the adhesions and it occurs to me that this might be my new normal.

Anyway, mostly I'm just frustrated. Anybody have other fancy tips for managing adhesions? I've been around the block enough to know what I need to do, like it or not, but any suggestions are welcome in case there's something I haven't tried yet.
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ATXGuyATXGuyMember
I have a massage therapist who I trust implicitly (she is also a licensed PT and has nursing training), and she did wonders in releasing adhesions from a shoulder surgery, but I too would have reservations about it, given the proximity to different internal structures in the abdomen.

It would require some very careful research into a provider for sure, but it's something I'd consider if my surgeon was on board.
TE MarieTE MarieMember
You have described what happens to me exactly Spookie. I don't realize there is a problem as I am still going what appears to be as much as should be. I hit bottle necks too. I use the setting on my bidet to give myself partial enemas. It works better than waiting to drink something or stand on my head. I drink my white grape juice and quit solid foods too. I ran this past my GI and he said that was good as we want to get the excrement though the pouch.

I don't know if this sounds sane or not. I've envisioned having some kind of food stop up part of the pouch while the other is functioning. What do you think about the following description?

http://www.ncbi.nlm.nih.gov/pubmed/24063866
SpookySpookyMember
Very interesting, thanks for posting that! That's not entirely unlike what I've been experiencing, though I believe my obstructions might originate slightly above the pouch, given my history of adhesions and the area where the abdominal discomfort tends to be localized (near the old stoma site). But then again, the cramping and abdominal discomfort could also be caused by stool backing up that can't fully enter the pouch. Clearly some stool is passing around the obstruction in both our cases, though, and in my case it seems there's a sudden release and then whoosh and it's all out. So when they pass, they tend to pass fairly quickly, though I'm left with residual discomfort for a day or two.

I've been scoped several times in the last few years, most recently February. Is that how ELS or PRA is diagnosed, I wonder. All things to run by my surgeon, for sure! Thanks everyone for the feedback!
G GraceBMember
I am also dealing with those issues scar tissue and poor pouch function, Antibiotic every day switching from flagyl and cipro every month and also the enemas and cream for burning. I changed my diet to gluten free. In the morning I have gluten free oatmeal. When I take it out of the microwave I sprinkle about tsp of mirolax and a little honey and mix it well. I don't make it thick. The gluten free and the mirolax in the morning seems to be helping me with those painful bowl movements that sometime loose and other times thick and painful and feeling constipated. I have been trying to make some of the gluten free products because it is very costly. I don't know for sure if it is the gluten free diet that is helping me. I will continue to stay on it. I don't eat anything that is tough to eat and I stay away from beef and sugary products, I have been on this for about 3 weeks. I only drink and eat lactose free. I will keep you informed to how this diet is working. I just wish for everyone to do well It is a struggle and I hear and feel every ones pain.

Health to all Grace
TE MarieTE MarieMember
Spooky, I have my hang up or partial obstruction at my old stoma site too.

I had a CTscan and x-ray with contrast in addition to my pouchoscopy in July. I discovered that at top of my pouch there is a difference in it's size and the small intestines size. I forget which one is the larger. The abdominal area I thought was small intestines leading to my j-pouch was my j-pouch! I have a large pouch. I don't know what size it is supposed to be but mine is large. There isn't much distance between the adhesion old stoma site and the top of my j-pouch. Sorry if TMI but I can actually feel a hardness in this area at times.

It's either a clogging above the pouch or something's getting stuck in the pouch causing a backup into my small intestines, which includes my old stoma site adhesions. It could be some of both. And while all of this is happening the water is getting absorbed from the excrement thus causing thicker harder to pass stool. It's very painful to pass even after it's unclogged. I know this is gross sounding but I could not figure out where all the excrement was coming from the last bad time. I passed substantial amounts of firmer stool in one day than I ever remember doing since I've had my pouch take down almost 4 years ago. Afterwards I have to eat soft foods so insure "safe passage" as the intestines feel inflamed.

Grace, I understand what you are doing with the miralax. Have you been tested for celiacs? I was tested for that too in July and don't have it. Therefore there's no need to eat a gluten free diet. That said I buy gluten free pasta to cook with. I started doing so when my BFF, who has celiacs, came to visit and I thought the rice made pasta tasted the same so kept buying it. I think GF keeps it from slowing down my system as much as regular pasta. Do you ever feel like a big science experiment?

Just when I think I've got it about figured out something different happens. The premise of a j-pouch sounds simple and it's far from it.
G GraceBMember
Yes Marie I feel that everything I do is an experiment. No I don't think I have celiac I was tested 5 years ago a year before I had my surgery. I keep complaining to my doctors and they tell my I have scar tissue and poor pouch function. I have been trying everything. The only thing I find with glutted free it is made with brown rice and things that are constipating so I have been trying to make my own stuff that is less constipating. I have been trying the mirolax which helps with constipation. I don't know what the answer is but I keep trying. Either constipated or have the runs so there for, every thing we do is an experiment Be healthy Grace
SpookySpookyMember
TE, thanks. That's almost exactly what's going on with me, as I just found out. I have adhesions, which we know about, and the problems are primarily at the old stoma site.

I saw my surgeon today. My MRI was clear, but what the ER doctor didn't tell when I was there a couple of months ago, there was in fact a bit of air/fluid around the stoma site, suggestive of an obstruction. Again the ER doc did not mention this to me at all, so I'm a little miffed. This is at the old stoma site and yes, I can actually feel a bulge or hardness in this area at times as well! Interesting! My surgeon wants to see me again in 3 months. He did say that if the obstructions become too frequent or don't pass on their own, surgery may unfortunately be an option to "free up" the site as he put it. At this point, I'd have to be half dead to consider another surgery, so if I can manage these obstructions conservatively, I'd rather do that, and my surgeon agrees. So, that's where we are now. If it's not one thing it's something else, it seems.
SpookySpookyMember
Marie, sorry I wrote that quickly as I was just coming out of the surgeon's office. As far as I'm aware, my pouch is not considered to be "large." Everything suggests the pouch itself is normal. But as far as adhesions at the old stoma site, what you describe sounds quite similar to my experience. Even in the early days after my takedown, I was sometimes aware of stool passing through the old stoma site, and that area of my gut has always been quite noisy. None of this actually really surprises me.
clz81clz81Member
Sppoky, I have nothing to add to this thread other than to tell you that I could have written your original post word for word. I'm totally in the same boat except that I haven't been able to fend off all of mine at home...4 hospitalizations in the last year. But the location of pain/adhesions and how the symptoms present is all identical to yours. The comment about foods showing up days later rings true as well. I was shocked to see a bunch/clump of seeds a couple days after I ate them. I'm very careful with seeds now.
SpookySpookyMember
clz81 and Marie,

Yes this absolutely sucks. I'm also annoyed that I've gone literally years without having any obstructions and now they seem to be something I need to watch out for on a regular basis.

I try to avoid the ER if at all possible. I don't usually find them to be that helpful (I still can't get over that the ER physician didn't tell me that I had an air pocket - although in retrospect, he did say there was a bulge on the x-ray that was "probably my j-pouch" *facepalm*), and I know I'll just have more x-rays. I can't even count the number of x-rays I've had since my UC dx, and if you add on to that 4 or 5 CT scans, clearly I don't need to be radiated anymore. *LOL* I manage them at home, if I can. Of course I'd go if it didn't pass, if the pain was too severe, or if I was vomiting and/or had a fever.

As for diet, I'm considering investing in a juicer, since I'd rather stick to mushy gushy foods for a while. Wink
S SubzeromamboMember
I had the same symptoms and problems as everyone on this post. I had three surgeries and seven organs removed. The adhesions and scar tissue covered the pelvic saddle and connected up to my 2nd ribs and to my spine just above L4. Over time the adhesions became harder, obstructions increased and spine and hip movement was restricted. My surgeon and Gi gave up and told me I had to learn to "just live with it."
Luckily my Gyn stepped in and referred me to a physical therapist specializing in scar/adhesion treatments. It is a combination of exterior and interior massages and exercises to stimulate the areas that almost atrophied from lack of movement.
The first three weeks were very painful. After four months the scars and adhesions are nice and soft. No lumps by the stoma incision. My back is the only place still receiving treatment. The adhesion to my spine is still pretty hard but the pain is gone!
TE MarieTE MarieMember
That is remarkable Subzeromambo Big Grin Thanks for sharing. I've been poking and massaging my adhesions for a few years. My stoma area is like a rock compared to the other areas. There is a certain technique used by PT's and I forget what it's called. Do you know what that technique is called? Maybe your therapist isn't using anything special but their own know how Smiler
TE MarieTE MarieMember
spookey - I have a suggestion. Instead of purchasing a juicer have you considered something like a Vitamix, Ninja or magic bullet? I have a Vitamix but have used all sorts of blenders in family and friends homes to make my daily smoothie. It takes the frozen/fresh fruit & veggies and makes them very liquid like and good tasting. I think it is these smoothies that always get around my blockage point's. I use them with my PlantFusion protein powder and almond milk they taste great.
SpookySpookyMember
subzero - I believe that is what might be happening in my case; over time the adhesions are becoming tougher. It's likely the reason I'm having problems now, whereas I did not initially.

Marie, thanks for the suggestion! I live in a condo so one of the major drawbacks of a juicer is lack of counter space/storage. A magic bullet would be a much better option. I'll look into all of those suggestions.
S SubzeromamboMember
Marie--I think it is called Active Release Technique or scar tissue release. It is specifically designed for softening adhesions. Regular soft tissue massage feels great but it does not provide long term relief. The active release technique is suppose to be good for a long time.
Here is an url with a good description: http://www.massagetherapies.co...r-massage-edinburgh/
Spooky--I hope you will be able to do physical therapy including ART. It has really improved my quality of life.
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TE MarieTE MarieMember
subzeromambo

Thank you for the link! The u-tubes included are great. It's the best thing I've seen in 4 years to explain all of this. I will be modifying my self massage according to what was explained in a few of the links.

I went into a prominent PT office here and discussed the kind of therapy I needed and the reaction of the PT was a deer in the headlights look. He said they could help me but I could tell it wouldn't work from his description. He wanted a referral from one of my doctors and thought he could help. I didn't bother. I'm going to ask my OBGYN.

Thanks again for sharing Big Grin
AllyKatAllyKatMember
After suffering with major adhesions for close to 10 years I had to bite the bullit and went in for adhesion removal surgery. That was over 4 years ago and although from time to time I still get them in these 4 years I've only been in the hospital 2 times vs every 3 months, no joke, I just could not go though more surgery unti I could no longer eat and hD no choice. What really helps me is my heating pad and lots of hot tea or grape juice.
TE MarieTE MarieMember

I'm posting to this thread again to let you know what I've found out and to see how you are all doing.

Subzero - The ART therapy worked well but I was afraid to let her work on the area that is around my stoma scaring.  I just don't know where the adhesion ends and my j-pouch starts.  My PCP checked my abdomen, she also prescribes my pain medication. She could tell that my adhesions were better.  I didn't tell her about the ART therapy until after she noticed.

 

I found out in February that I have more than adhesion problems.  I had a balloon dilation performed on one of the "owl" eyes during a pouchoscope.  It was at the efferent limb of my j-pouch, or the short side of the "J".  It didn't work for very long. So the problem that I thought was at the top of my pouch was almost at the bottom.

 

I started taking an antibiotic Xifaxan, instead of Flagyl, rotating with Augmentin changing every two weeks.  I couldn't tolerate flagyl anymore.  I made a mess of things by NOT using VSL#3DS for several months in hopes that the antibiotics would get the inflammation down.  I recently did a solid week of no antibiotics but 2-4 times a day of VSL#3DS probiotics instead. I'm again using probiotics when I'm taking antibiotics again.  I messed up my system by stopping them and have a yeast infection now too.  I'm treating that with traditional internal an external medication.  I am miserable.

 

I've been limping along since Feb., taking my j-pouch antibiotics and trying to get my hypothyroidism under control.  FYI - Thyroid problems affect our pouches and mine is really out of control. I'm working on that with a new Endocrinologist. I'd just worked with my PCP's before.

 

My GI wants to do another pouchoscope himself, rather than looking at the pictures after another GI does it.  He's the head of the IBD Clinic at Mayo's and teaches etc. - so I can't get in until the last week of July  He thinks I might need a surgeon to dilate it under sedation - after he does the scope/dilation.  

 

I am limping along here and feel tethered to my bidet.  I have to use the "turbo" function to give myself enemas multiple times daily.  We went away for 2 nights twice since February.  I take along fleet enemas. The instructions say to only use that solution once every 24 hours.  I use warm water the rest of the time as once a day isn't enough.  

 

I'm still basically eating PlantFusion protein fruit/veggies smoothies, english muffins w/peanut butter and Greek yogurt daily.  Sometimes I eat some chicken and mashed or baked potatoes or sandwiches. I don't eat beef at all.  I tried a McDonaleds quarter pounder a few weeks ago and remember why I haven't had their food for several years.

 

I hope you are all doing well. I keep thinking I just need to give up the fight.  I have chronic cuffitis and pouchitis.  The cuffitis is under control with daily canasa or anucort suppositories but if I stop using them it comes right back.  I have IPS as well.  This makes since because I had IBS along with my UC. My pouch is large and for all I know could be prolapsing too. I'm in chronic pain from this and take Norco pain and Bentyl antispasmodics daily along with managing my other health problems and different kinds of chronic pain from them.  The pain medications don't take away all of the pain but dull it.  I have some really bad days.

 

I'm disabled and haven't been able to work for 5 years.  I should change my screen name to Debbie Downer.

 

Last edited by TE Marie
S SubzeromamboMember

I am sorry you have had such a horrid time! I don't know if you would like more advice or just a supportive shoulder to lean on? It has been long enough since your last surgery that ART can be done on and around the stoma site. I have one very hard section slightly to the left of my incisions scar that can not be massaged due to resulting pain but breaking up the rest of the scar tissue helped me to increase my yoga stretches. This old lady can now do a back bend! Lol! I keep creating new scar tissue so the ART continues to be very helpful.

One change that worked for me to stop pouchitis was eliminating sugars, grains, dairy and soy from my diet. It took a little over 30 days for my chronic pouchitis to completely disappear. I am so relieved to be off of the antibiotics. Flagyl made me very ill. Xifaxin worked well but it is too expensive for me. Before changing my diet I had cuffitis too. I was pretty overwhelmed by it all. The pain, the exhaustion, the despair, and the loss of identity from being chronically ill and in pain was horrible.If I slip from my diet, the pain and infections start all over again. 

It is very late here, but I wanted to respond to your post asap. Hang in there! 

 

 

 

 

 

 

 

Last edited by Subzeromambo

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