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Hello to all here!

I very recently discovered this site and I'm so happy to have found this place! I would say..."you have no idea"...but I imagine most everyone here...does... Cool

As this is my first post I will give a tiny amount of pertinent background concerning my current "issues".

I was diagnosed with stage one Colon Cancer in 2004. Within just a few hours of diagnosis...I was in emergency surgery where I had a partial resection then about a month and a half later...resection and j pouch (and Hysterectomy). I lived in a small town in south central Oklahoma and just kinda went on my way the best I could. I talked to my surgeon several times at follow up visits concerning diet/exercise/lifestyle/etc. He basically just said I'd have to kind of experiment and just what worked for me. OKAY...I felt kinda just "on my own". I pretty much just did my best/hoped for the best.

I have never been able to have the energy/efficiency/stamina I had pre 2004. At best...at times...maybe 60%.

For the past two years...I've just had so many problems. I have worked closely with my G.I. dr and surgeon. Neither of them has ever used the term "pouchitis". But after reading on here I think that's what I've been dealing with. Fairly chronically. The pain, bloating, diarrhea,(sometimes uncontrolled). Lomodal does NOTHING at these times. I basically just stay home a lot of the time. I am getting to where I see food as almost "the enemy" when feeling this way.

Also...almost worse than the pouchitis...is the Anemia. As recently as six weeks ago...when I went to my surgeon for a pre scope visit...he had to hospitalize me after doing blood work because my iron level was 7.8. I had to get blood transfusion. (2 bags) At that point...I couldn't walk upstairs hardly in my home and my heart was wildly racing at the littlest exertion. So after transfusion I prepped and did a colonoscopy (not really, cause it's just a tiny piece but that's what I say for lack of better term). I did have a few benign polyps. We did upper endoscopy and found polyps in stomach inside a hyedal hernia (please excuse if I spelled incorrectly). So my Dr didn't remove them but biopsied and they were benign. Im scheduled for a capsule endoscopy this coming Tuesday.
My most current labs (this week earlier) showed very low iron (8.2 and very low b12). My g.i. dr actually referred me to an Oncologist for the Anemia but I don't go till October 5th.

Last week after Id been reading on here about Pouchitis...I explained my reasoning about why I thought that might be something I was dealing with. He did prescribe an antibiotic and also Welchol. I do feel better after 4 days on the medicine as far as the pouchitis stuff.

However...I feel somewhat discouraged and like I'm really losing ground. Im still fairly young and I don't want to be sick all the time! This is all really having a huge effect on my ability to function. I have very little stamina. I cannot work out and exercise although now that it's becoming a bit cooler...Im walking a bit as I'm able. But this level to me is NOT acceptable. Fortunately...I do not have to be employeed as there is no way I could work like this. : O

It seems to my husband and I that we need to find and stop all bleeding! Then build iron from there. Im sorry. I forgot to mention that the way g.i. dr was treating anemia was with first iron pills. Then "iron therapy" in hospital setting thru iv. No help or effect even after 6 sessions. It's all well to try to improve my iron count but shouldn't we STOP bleeding? Seems kind of obvious? Maybe not?

I don't want to belabor all this...I am very open to fresh thoughts...ideas...feedback...lol...I was so so happy to discover this place!

I thank anyone who's had the patience to read all this and I apologize for such a lengthy post.

Replies sorted oldest to newest

Sounds like you have a lot going on! I've been dealing with similar issues for about 9 years as well. Lots of iron infusions, blood transfusions, etc. As of yet they haven't found the source of my bleeding. I think it's good that you're scheduled to see a hematologist soon and have a capsule endoscopy, hopefully they can find something after those visits. Do you actually see blood when you go to the bathroom? Are you in Texas? I heard there is an excellent GI Hospital in Houston, maybe worth a try? Living with chronic anemia is not fun, boy do I know!
K
Good Morning and Happy Monday,

I do see dark blood in stool and also blood from just the irritation in that area being so sensitive.

I was sad to hear I had to do a full prep for the capsule endoscopy so I guess I'll be drinking that drink with "the pleasing lemony taste"...Ha!

I don't know who finds that prep drink "pleasing" but whoever invented it needs a good spanking. It is gross! Beyond gross! It is very hard for me to force it down. Ughhh. (Sorry...I just have this thing about it.)

I am very happy to say I am having a lot of improvement after several days on the antibiotic. That is a happy thing.

But just want to be able to power thru my "to do" list in a timely manner each day. Right now...I basically prioritize my tasks and get about one third done. My nature is very "task oriented". It's hard to just "walk away" and ignore things needing to be done. : ))

I live in a suburb North of Houston. I really like my Surgeon and Dr. Do you know the name of that hospital? (My youngest son is Diabetic and we go to downtown medical center for visits.)
merrymommy
I'm not sure the name of the hospital, my Internist told me I may need to travel to Houston where there is a specialized GI department. I didn't ask about the specific hospital. I have an appt. for a capsule endoscopy this week also, I LOVE the mag citrate too....NOT!!! Can't even drink anything lemon/lime anymore, makes me want to vomit! I hear you about the lack of stamina to get thru the day, I have to make lists too. I had 5 units of blood 4 weeks ago and my energy is still terrible. My Hgb is good now but I still feel awful, I have IBD arthritis/Lupus so maybe that's my problem. I know it helps to make lists and to keep plugging along. I also remind myself that this is temporary and I will feel better at some point. Good luck with the capsule, I hope they find the source of your bleeding. Sounds like it's up higher in your small intestine like mine, apparently that's harder to diagnose than one would think?
K
I was just going to give an update. I went in and got all the leads on and swallowed my little capsule/camera. The nurse put the velcro belt around me and had me all hooked up. She showed me a tiny little blue blinking light and said if the light goes off...call the office. I asked if I could troubleshoot somehow if it did and she said "no". So all went well for four hours. I was finally going to get a "light" snack and I noticed my blue light was off. I went to the office and she said it would probably be all right. It might just have finished earlier. She said she'll call with results in a couple of days. I hope I don't have to do a repeat.
merrymommy
Hi Merrymommy:

I can really relate to your difficulties. My body doesn't produce ferritin, which is a protein in the body that binds to iron allowing it to store where it should. So I am almost always very iron deficient. I get ferritin infusions quite regularly, and blood transfusions about 3 times a year. Thankfully, my j-pouch isn't affected by lots of roughage and iron rich vegies/food. I think I've always had a problem with this, but obviously my UC exacerbated it and then I had breast cancer resulting in chemo/radiation, which also contributed to my deficiency. My oncologist is also my hemotologist. I'm glad you're seeing a specialist -- they will get this under control. When you have levels as low as yours for long periods of time -- you definitely need a hemotologist. Once blood loss is ruled out, they should be checking your ferritin levels. Good luck and keep us posted. Smiler
Laurie49
Thank You for your suggestion about the ferritin. I will ask the Dr this morning about that. I just returned from buying groceries very early. (Pre 7:00 a.m.) I only got "the minimum" but am exhausted from the effort. I really think if I dont see a marked improvement soon...I will need to teach my hubby how to grocery shop. (It's not as simple as it sounds...lol)

Anyway...I guess I better get the directions mappped and get ready. I'm sure I'll have plenty of New Patient Paperwork to fill out. lol

: ))
merrymommy
Did you have UC or was your diagnosis cancer?
I would not think you have pouchitis if you never had UC. Also, the treatment for pouchitis is antibiotics, not welchol which also leads me to believe that you don't have pouchitis.

If I were you, I would travel to the Cleveland Clinic to see the country's leading GI on pouches, Dr. Bo Shen. He's a master at treating complicated cases. A consultation with him could expedite your getting well.

Sue Big Grin
suebear
I was diagnosed with stage one colon cancer at an appt where I had just "run in" to check with my general practice dr why I was having some pain...by that night I was in emergency surgery. Things were moving fast! But I had never been previously diagnosed with UC before the cancer. But...it would explain a lot...apparently...I have struggled with fairly severe Anemia since I was in my late teens. What if...I had bleeding polyps all those years that were like a timb bomb and went off at age 34 years old. So unusual I was told by so many people.

Perhaps I am totally misunderstanding what "pouchitis" is. I understood it to be a condition related to the j pouch becoming infected and/or inflamed and that resulting symptoms include sometimes uncontrolled diarrhea and severe anemia.

I did have a j pouch done in second surgery but no one really discussed the complications or ongoing issues I might experience other than that I "might" have loose stools at times. Gee thanks for the help! lol OKAY YEAH.

I actually just returned from the Hematologist my GI dr referred me to. She was very helpful and I can see I will be so glad I followed up and gave her a chance. Turns out...she is a Hematologist. But...she has lots of patients she sees for post surgery gi issues and is very familiar with anemia. She immediately and proactively started explaining how we would treat this and what her protocol would be...I was so happy that at long last...someone was actively and knowledgeably addressing this fairly vital component to my daily well being.

It turns out that something no one else has ever noticed or targeted was my Ferritin level. She said it was a 4 and should be 16. (I havent googled it yet, lol) So all the iron therapy in the world wouldnt have helped me without knowing that information.

So 12 infusions by i.v. for a start.

I will let everyone know how it goes...the further adventures of my medical journey... Roll Eyes
merrymommy
I never had UC (I had severe, chronic constipation) and I get pouchitis now. I aqm also very anemic, but, things I have heard about iron infusions scare me. I get allergic reactions to all kinds of drugs, (antibiotics, anti depressants, blood pressure drugs) and I have heard that many ppl get allergic reactions to iron infusions...anyone know? THNX
K
I don't know if Im experiencing an allergic reaction...but many times...my arms are very sore and tender...not just at iv site...it's little things but can be uncomfortable and has definitely required some "workarounds" at times...

Im rethinking the whole infusion thing while waiting on latest lab results. Ive had these weekly for three months with mediocre results. Im a small bit better as far as my daily functioning. That's not much to show for all this invasive and painful "therapy". Im not trying to be negative...but Im just not sure Im ready to sign on indefinitely and be a pincushion anymore. : )
merrymommy
I too have had some anemia issues and am on iron supplement 3 times per day. My main issue seems to be potassium, magnesium and sodium being out of balance. I am separated from my husband currently and admittedly my diet could be better but I've now been in the hospital 3 times in 2012 for dehydration issues! The extremely low potassium leaves me so fatigued! I have no explanation at this point for why this is happening. Good luck!
Txgal58

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