Will this ever get better?

[Glo]

I was hoping that someone would start a post on this subject, but it doesn't seem like it so, here I go! I'm one year post surgery as of June 3rd. I'm getting my mobility back more and more. I can walk about 20 minutes on the treadmill and at last I can get on the floor and sit. I still can't sit meditation style but that will come in time with my stretching exercises. My most bothersome problem at this time is being constipated chronically. The constipation is what lead me to see the doctor in the first place in 2006. I had this test, and that test and was finally told it was all in my head. I was deemed a hypochondriac. After two years, almost three, finally a nurse practitioner listened to my symptoms and ordered an MRI. The next morning the nurse called me and told me I had a spinal cord tumor. After that the doctors no longer sent me to psychiatrists for medication to stop my hypochondriac behavior. My constipation was not in my head. My constipation was due to my spinal cord tumor. It felt so good to tell them off, how dare they think it was all in my head. Anyhow now I am hoping by posting this some of you will post your experiences with constipation and how you cope or resolve it. Does it ever get better? I can no longer take stool softeners, they give me terrible heart burn. I can't use senna because the doctor said it's a laxative and can eventually damage my intestines and bowel. So, I use a combination of lots of fiber in my diet, drink lots of water, and prune juice which unfortunately is not predictable but does work. The problems is that if I drink prune my day is ruined, I have to stay home near a toilet and as gross as this may sound, it gives me horrible gas
I don't eat anything that would constipate me. I eat tons of fruit and veggies and add fiber to my diet via benifiber. I can't take Metamucil It makes me itch like crazy so, I must be allergic to it? I've also tried flax seed to no avail
So that's what I'm dealing with, relentless uncomfortable constipation. Oh and my tummy is so bloated all the time I look pregnant! Any ideas, thoughts, recommendations would be welcome. I'm be going back to see my doctor June 29th but he never offers me any help or hope. He say's there is nerve damage, okay I get that! I'm wondering what people who are paralyzed do? They must have many of the same issues we all do with constipation and or bladder issues. My bladder isn't as strong as it use to be but it has gotten much better than it was in the beginning

Glo

[diane]

Hi Glo-

As a "recovering hypochondriac" (it took 12 years before I was diagnosed) I vicariously enjoyed your description of telling people off - I wanted to but could never get up the nerve - and I still feel angry if I think about it.

In terms of the problems you're having, I've found that too much fiber can actually exacerbate constipation - I think in the absence of proper nerve signals it can actually back things up instead of moving things along. I've also found that I have trouble if I take painkillers (even ibuprofen) or muscle relaxers.

I've had good luck with stewed prunes, but I eat them before I go to bed; not in the morning.

Hope this helps.

Diane

[Glo]

Thanks Diane, I'll give it a try. This morning I got a chance to talk with the nurse practitioner that finally listened to my symptoms and ordered my first MRI. She and I have set up an appointment for next week. She said, taking a bath in Epsom salts may help and also adding magnesium supplements to my diet. I'll be curious to see what her other recommendations will be. I'm also curious as to what type of specialist she will be sending me to?

[diane]

Hi Glo,

There's a fairly new field of medicine, neurogastroenterology, which specifically deals with digestive and motiliity issues caused by the brain and nervous system.

I don't know where you live, but the University of Pittsburgh Medical Center and the California Pacific Medical Center in San Francisco both have neurogastroenterology departments. If neither of these is convenient, perhaps they could refer you to someone near you.

Diane

[Glo]

I've never heard of neurogastroenterology! Thank you so much for the information Diane. I'm being treated at University of California San Francisco. I'm also very familiar with California Pacific Medical Center. I was being seen there before I found UCSF.
While being treated at CPMC is where I got terrible treatment the doctors in the clinic there sent me to the psychiatrists for my so called hypochondria
I don't blame them anymore. They just didn't know what was wrong. It's not like spinal cord tumors are common and even the nurse practitioner thought I had spinal stenosis but thanks to her insistence to have an MRI my tumor was found and it's out and I'm doing great! I'll make sure to mention neurogastroenterology to my doctor and if he doesn't know anything about it I'll go back to CPMC, but first I'm going to try at UCSF where I had my surgery.

Glo~

[iam1ofjw]

i started taking my fish oil capsules again and noticed it seems to help with keeping my bowels the right consistency. my heart doctor recomended 4 aday for my heart. he said they can't hurt anyone.

[jasonm]

I have bowel and bladder trouble as well. Maybe its just not mentioned, but it seems like many people on this forum dont have these issues? I was told bowel and bladder were the most common issues of an SCI. If I could have one issue/symptom relenquished it would be my bowel trouble. I go a little almost everyday but not completely emptied out. every other day I have this problem where stool gets jammed up near my sigmoid colon area and I feel like there is a golf ball stuck in there all day. I had a colonoscopy done just to make sure it wasnt something besides neurogenic causing the problems.

I use Miralax, 1 stool softner every other day, and senna or doculax on occasion. I was told that senna is not dangerous as long as your not taking it everyday for a long period of time. You could try it once every 3 or 4 days. I agree too that too much fiber might not be the best always, the more you eat the more you need to drink so it doesnt turn to cement. Miralax will soften your stool too if you cant take softners, but it can cause some gas.

[sw]

Hi Glo,
I am a 47 year old female with similar problem but am pre-surgical. Try raw, hulled sunflower seeds but go easy. I started putting them in my morning granola because they added to the taste and I was snacking on them in the day. Where constipation was an issue it became too frequent trips to the bathroom. I could not figure out why and I was not using the stool softeners or Miralax - had run out. I did some online research this being the only new thing in the diet and found it could have that effect. I stopped eating them and in a couple of days constipation was back. I bought another bag and am trying to find a balance. Might work similarly to the post that said the fish oil capsules.

[lw]

Hi. You're definitely not alone on this issue. I had my surgery 19 months ago and only recently has my constipation started to resolve. For the first 3 months I was completely unable to go full stop. Then I had to rely solely on laxatives once a week. It may sound like a trivial issue to some people who have never experinced this (especially given what we've had), but it can really make you feel ill. I had severe headaches, nausea and general discomfort. To be honest I don't think there's much you can do except wait for your body to sort itself out and get back into a regular pattern. I tried everything as well. I don't think numbness/lack of sensation helps as you can't always feel when you get the urge. Don't give up - as I say, it's taken me 19 months and I had been worried that it was permanent. Easier said than done,but try not to let it get to you.

[Fiona]

Hurray! I thought it was just me and like the rest of you no-one understood not even the neurosurgery department. I too had to have a colonoscopy which showed nothing. Finally after 15 months I was finally tested using "anal monometry". The specialist used a balloon and could see what I meant when I said I just didn't want to go. My bowel needs at least 3 times the pressure to trigger an evacuation reflex! I saw a wonderful nuse who said cut the laxatives, have a healthy diet with plenty of fibre and water. She said it was all about positioning and using muscles e.g. the diaphragm and relaxing the spincter. Actually, it works. I have had no oral laxatives for 9 months except food like prunes etc. The only thing I am allowed to use is glycerol suppositories if I haven't been after 3 days. I probably do this about once a fortnight. The suppositories will not affect bowel function. You do need the pushing technique too though.

I am in New Zealand and the nurse had to go to London to learn this technique. I am still working on it but it is getting easier. See if someone round you knows these technigues - it's straightforward when you know how and the siuppositories really help if faeces are a bit hard. I think too many practioners treat constipation from the wrong end. We all have "saddle" issues - this is where the problem needs treating.

Hope this might be something new for people to try.

Fiona