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CT Scan and Updates

Posted: Wed Sep 29, 2021 1:46 pm
by Rikimaroo
Hello My Friends,

CT Scan seems to be stable with Cancer, but I have major issues with my small bowel. It's got worse and now I am distended almost everyday, even if I barely eat, have Small Bowel Obstruction (Partial) they are going to meet next week to discuss next steps, like surgery most likely. Oncologist postponed Chemo today because of possible surgical procedure and plus with the SBO issues I barely eat and lost about 15 LBS so far over 3 weeks. I am drinking Ensure and eating yogurt, once a day and maybe something heavier, but very small portions, still have partial blockage so I get swollen belly like I am pregnant(LOL) and it kind of sucks cause then I throw up what I might of ate day before because its just not moving into the intestines'.

I think once this is fix which I have been dealing with for 2 years since last open surgery I am going to be much better. They are not 100% sure yet if its adhesions, peritoneal carcinomatosis or something else, but I am leaning toward adhesions cause I never had this issue before. The Abdominal pain can be super painful almost excruciating, it doesn't happen everyday, but I am distended most days.

I tell you if its not one thing its something else. Ugh!!! PS Cea is now 53 from 23 3 weeks ago and I think its all have to do with the abdominal issue because cancer is stable.

Riki

Re: CT Scan and Updates

Posted: Wed Sep 29, 2021 3:55 pm
by claudine
Gosh you're going through the wringer! I hope whatever comes next (surgery?) provides a good solution for your small bowel issues. At least it's good news that your scan is stable re. cancer. Keep us posted XXXXX

Re: CT Scan and Updates

Posted: Wed Sep 29, 2021 9:23 pm
by beach sunrise
Happy to hear scan is stable.
Hate to hear sm bowel is acting up. Sounds just awful.
I'm telling ya, a good probiotic for gut flora does a body good.
Keep us updated, OK.

Re: CT Scan and Updates

Posted: Thu Sep 30, 2021 5:37 am
by JMRWife
I'm so sorry you have to deal with this. It sounds awful. I hope your discomfort ends sooner than later. ❤

Re: CT Scan and Updates

Posted: Sat Oct 02, 2021 9:28 am
by DarknessEmbraced
I'm glad your scans are stable but I'm sorry you're having such a hard time with your small bowel. I hope things will improve for you soon.*hugs*

Re: CT Scan and Updates

Posted: Sat Oct 02, 2021 12:56 pm
by catstaff
My husband had an SBO this past summer, about a year after his surgery. Not fun. They did not do surgery and it resolved on its own after two long, long weeks most of which was spent on a nasogastric tube. So the conclusion was it was due to adhesions and not cancer (he did have CTs but sometimes peritoneal mets don't show up well, as we are all too aware). The surgeon offered to snip scar tissue while she's in there if he is able to have his reversal eventually. I guess she'd just hunt around for something that looked snagged. He's still having problems but lower down and C. diff is a strong contender right now.

The biggest issue is nobody has a good idea why this happens (other than scar tissue is stiff, but why does it seize up and then release?) so there was no coherent advice on avoiding it recurring. We have decided he should avoid most raw vegetables but even that may not be necessary.

I hope that surgery can resolve this for you. They do have to be careful because surgery causes *more* scar tissue, but often it's the only option.

Bowel obstruction is certainly capable of raising CEA since it causes inflammation. Hoping that's the case here.

Re: CT Scan and Updates

Posted: Mon Oct 04, 2021 12:09 pm
by Rikimaroo
Thanks CatStaff for the info. It seems that when I got my open surgery 2 years ago, overtime it got worse and now I am getting partial bowel obstructions all the time and I am mostly on a liquid diet, with some small small solid food. The reason I know this is recurrent and persistent is because all my poop is watery no solid poops, even if I eat some solid I would expect solid sometimes. Even before it got this bad the poop was more watery and this is a colostomy.

Laparascopic surgery would be the best case scenario since less risk of scar tissue. But given I had prior surgery in pelvic region twice not sure what they will decide. They called me today and told me surgery would most likely be the best route. I am past the NG tube stage this is recurrent, so that won't resolve unfortunately. I am going to meet with the surgeon hopefully next week to go over details of what we can do. I know open surgery can cause more or recur scar tissue but there is a wax paper they can put over your internal organs to prevent some of this from what I read.

This is The Cleveland Clinic so I am expecting top notch thought process and my Surgeon is very well known and experienced.

I will keep you all posted.

Best Regards,
Rikimaroo

Re: CT Scan and Updates

Posted: Mon Oct 04, 2021 2:38 pm
by catstaff
I assume they have seen this obstruction on CT? My DH also had an open surgery so presumably a lot of scar tissue, and turns out he is currently dealing with a recurrence (partial this time). Right now he's on "bowel rest" since it resolved previously. However, since yours has been persistent that's presumably why they need to try surgery. Laparoscopic surgery still causes some scar tissue though the benefits presumably outweigh the risks in your case.

Re: CT Scan and Updates

Posted: Mon Oct 04, 2021 6:35 pm
by Rikimaroo
Yes, here is the CT of Abdomen:

GI tract: Postsurgical changes of proctectomy with stable soft tissue
density within the prostatectomy bed/presacral region, corresponding to
areas of heterogeneous enhancement on most recent MRI and focal FDG
uptake along most recent PET. End colostomy in the left lower abdomen.
There are multiple significantly dilated distal small bowel loops
measuring up to 6.3 cm in caliber with transition point in the deep
pelvis at area of tethering of the distal ileum to lower scarring in the
presacral soft tissues. The terminal ileum is decompressed.

Is your husband able to eat normal? I can't eat normal like I use to because of this and I get loss of appetite even though I am not taken chemo right now. It really sucks. I love to eat. LOL....Mine hasn't resolved the right side of my abdomen is pretty hard and I can feel like ripples and I don't know if that's intestine stuck to my abdomen wall. The partial blockage has been there for about 2 months now.

Rikimaroo

Re: CT Scan and Updates

Posted: Mon Oct 04, 2021 7:23 pm
by catstaff
He can't eat now. He will be transitioned to liquid diet tomorrow. We don't know how things will go after that. It resolved on its own last summer but I don't see how that's a permanent fix. We have talked to multiple surgeons and resident surgeons and oncologists and though they all say it's a fairly common complication of extensive surgeries, none knows of any well-established way to predict who will experience it or how to prevent it.

Interestingly, he had a recurrence right about in the same area you describe for yours. Folfiri seems to have knocked it down since it seems to have disappeared into the scar tissue remaining from radiation. I doubt it's related to the bowel obstructions, however.

Re: CT Scan and Updates

Posted: Sat Oct 09, 2021 11:22 am
by DarknessEmbraced
I'm sorry you're having such a hard time. *hugs* I hope that what they decide to do will help you.

Re: CT Scan and Updates

Posted: Sat Oct 09, 2021 6:13 pm
by catstaff
Riki, we may be in your boat since he was in the hospital and was released, but is still having problems with anything solid getting through (liquids and very soft things may be OK). Same thing, history of major surgery, no sign of a mass on the CT. Radiologists here haven't speculated about scarring since they can't see that directly, they just assume it's present. Another oncologist checked the CT and agrees with that diagnosis (adhesions). He is naturally thin and is even more so now so losing weight would be pretty bad.

The "ripples" you mentioned are probably peristaltic waves where it's trying to push the intestinal contents through and is meeting resistance. That can be very painful if the blockage is complete or nearly so.

Re: CT Scan and Updates

Posted: Sun Oct 10, 2021 6:10 pm
by catstaff
Update: looks like they will decide on surgery but I won't know specifics for a few days. I hope this will resolve the issue once and for all.

Re: CT Scan and Updates

Posted: Fri Oct 15, 2021 12:16 pm
by catstaff
Riki, have they scheduled surgery for you yet? DH's was yesterday and it was more extensive than they'd expected. He had significant scarring and had to have a bowel bypass. Obviously it was never going to resolve long-term on its own. No sign of new or unknown cancer, it was all scar tissue consistent with the CT findings.

Re: CT Scan and Updates

Posted: Tue Oct 26, 2021 2:10 pm
by Rikimaroo
Hi Catstaff - Yes I have updates. I met with Surgeon and he wants to go with a pharmacological therapies which is Reglan and Protonix which honestly I been doing for 2 weeks now and it has not help. I know this is a surgical issue. They said they see the problem its small bowel kink in the deep pelvis. I guess because I had 2 surgeries in Deep Pelvis already with radiation it's a more difficult surgery. Bypass was mentioned and I would do that 100%, but that discussion was made with the fellow dr, when my surgeon came into the room he mentioned that not sure how much small bowel would be ignored. The bottom line my main surgeon didn't seem to be very understanding of the situation I feel like he just comes in like a hurricane doesn't read my chart, review scans, etc...prior to talking to me.

He is a great surgeon but somehow I think he let's the residents/fellows review then have them fill him in, but then he brushes them off LOL....I am still having the pain, and just suffering through it. I have a call out to my surgeon in Ohio Cleveland Clinic who did the surgery that caused this problem, not on purpose of course. He wants to talk to me and go over my symptoms and scans. There both Cleveland Clinic so he has all the records.

I am so frustrated with this. I am at my wit's end. I have lost over 30 LBs within 1 month, which is not good. I am on a total liquid diet, but sometimes I will slip in some solids when I feel better only to go through the motions of pain, throw up and just uncomfortable. Can't sleep most nights because of the peristalsis movements causes slight pain, sometimes severe. I am kind of shocked my world renowned surgeon was so hesitant to say let's do surgery. I am not rushing to surgery, trust me prefer to not have the knife, but I think that is the only solution. If they can bypass I would do that. I miss eating :(

How did you husband surgery work out? How is he feeling? Did it help? Does he feel relief? Was it deep pelvis, that is where my issue is?

Riki